Dream Mom

Organization Friday~ Progress Not Perfection

2009-07-09T22:58:00.001-05:00

Employee Lunchroom Remodel

It can be pretty exciting to see a dramatic makeover. I don’t know anyone who doesn’t like a great before and after. Many times, as soon as people are done admiring the makeover, there comes a point where they want that same thing for themselves. It doesn’t matter if you are looking at a magazine, watching a decorating show or seeing a before and after picture of someone who has lost a lot of weight. At that point, it’s not uncommon to start hearing the objections or reasons they couldn’t do that in “real life”. How often have you heard someone say after seeing a contestant on “The Biggest Loser”, “Well, I could lose weight too if I didn’t have to work and all I did was stay at the ranch all day.” Or when Oprah lost weight, people would say, “Well, I could do that too if I had a personal chef…” People like to make excuses as to why they couldn’t achieve the same result.

It’s great to be inspired by makeover shows. They are exciting and they usually promise what they deliver…a fantastic result! In real life, it takes a lot of changes for them to get to the end result. The end result is the culmination of a lot of little victories or little goals along the way. It’s not just one thing but a lot of things. But looking over the show, we like to project of what life would be like if things were “perfect”. We’d like to think that if we stayed at the ranch, we’d lose all of that weight or if we had a personal chef, we could achieve great things. The problem is perfection. We think that to achieve great results, we have to be perfect.

I was at a client’s house last week when she pulled out her a canvas bin with plastic baggies inside. On the outside of the canvas bin was a handwritten label that said, “Baggies”. Inside the bin, contained multiple gallon zip loc bags each with different size baggies inside. She had one for the snack size baggies, one for the sandwich, one for the quart size, etc. One the outside of each bag she wrote the size in a magic marker. She did it to make it easier for her young daughter to fix her lunch.

I noticed the bin and told her I really liked it. She said she got the bin and put the label on it the other day. I told her that it looked really nice and that I was proud of her. I have worked with her for a while now and she has always been the client that likes “being” organized (meaning hiring an organizer to organize her stuff) versus doing it with the organizer. But this time, she took the initiative, on her own, got a bin, labeled the baggies and labeled the bin. This was a huge step. I was really excited for her. We talked some more and she said that in the past, she wasn’t bothered when the house wasn’t organized or if it was messy, but now she likes it when it’s clean (she has a cleaning service) and organized and she wants to keep it that way. This was a huge step for her. I like to think of it as a light bulb moment for her.

Labels on bins in Employee Kitchen Remodel

As I looked at the label, I thought about it for a minute. If I were doing the label, I would have used the label maker and/or created a pretty label. She could have done the same thing. After all, she did have a label maker. (I ask that all clients purchase one for their own home so that they can label things when they need it.) But that wasn’t the point. The point was that she took the initiative and did this herself. She recognized a problem and fixed it.

How often that many women would have got caught up in the perfectionism of the label. They might have searched for the perfect bin or worse yet, purchased a bin without measuring hoping it would fit! Or they might have put off the project since they didn’t have the bin or put off the project because they didn’t have time to make a label. The list could go on and on. When you get caught up in perfectionism, you miss making any progress at all! Far better to take baby steps than no steps! More importantly, making this bin wasn’t a baby step, but it was real progress. In the past, she would have done nothing and it would have been just fine. But now, she wants more for herself. She is taking actions to support living the lifestyle she wants to live. She is getting herself organized so she can live this way. This is huge!

And how easy would it be when she has another minute on another day to create a label or better yet, a pretty label for the bin.

Sometimes, when we are trying to make a change, we need to remind ourselves that it’s o.k. if everything isn’t perfect. It’s progress over perfection. In terms of organizing, I like to think of this as function over beauty. Get the function down first, then make it beautiful; in this case, using a bin she already had and creating the label is making baggie storage functional first. She can always come back and make it beautiful by getting a prettier bin or attaching a pretty label.

As we finished up our talk, I reminded her of the motto for my business: “Keep it simple. Get organized. Make it beautiful.” I told her that when we make things nice, we want to keep them that way and that was the reason for the motto.

Notice that the motto has keeping it simple and getting organized before making it beautiful. It’s o.k. to make baby steps. Just make sure to pat yourself on the back once in a while.

Note: I am a Professional Organizer and Home Stager and own my own business, Dream Organizers. My motto is: "Keep it simple. Get organized. Make it beautiful."

Make a Wish Trip Approved!

2009-07-08T00:01:00.001-05:00

Tonight I received a call from our Make a Wish Volunteer and she told me that Dear Son's Wish Trip to Florida had been approved. Thank you for all of your wonderful suggestions. We will be staying at the Give the Kids the World Village and will be going for Dear Son's 18th birthday! Give the Kids the World is a 51 acre resort for children with life threatening illnesses that want to visit Walt Disney World and other central Florida locations. He is going to love this!

We will be staying there for seven days. They have arranged for a "Meet and Greet with Barney" which was one of my requests. Dear Son has adored Barney for many years and although he doesn't play with him as much now, he still was Dear Son's favorite toy. You may recall a story I wrote about him here. Basically, once we give the o.k. on the dates (Dad needs to get vacation approval at work), they'll begin the planning.

When the Make a Wish volunteers were here, I gave them several ideas based on your suggestions. I also talked about the things Dear Son loves, namely:

Swimming-He loves to lie in a hot tub or a swimming pool.
Country Music-He likes all of it but especially Gretchen Wilson. You can read about that here.
Barney-I thought maybe he'd like to meet him and perhaps even celebrate his birthday there.
Animals-He loves animals and they love him. We thought maybe he'd like the Disney Animal Kingdom Resort or swimming with the dolphins.
Massage for Dear Son. His legs and feet swell a lot and I thought that he might enjoy it.
ET ride at Universal Studios. One woman sent me an e-mail and said her son was granted a wish. She said the favorite moment of her trip was when he did the ET ride. Part of the ride is where they have you fly in the air on bicycles like in the movie ET. They had special spots to tie down a wheelchair and she said she can still picture his expression when his wheelchair took off into the air flying! He has since passed away but she still remembers this ride as the highlight of her son's trip. Dear Son has always wanted to run like the other boys and I bet he would really like the feeling of freedom that this ride would provide.
Polynesian Luau-I thought he might like the hula and fire dancers.

We won't know the actual itinerary until a few weeks before our trip. The Make a Wish Foundation has already set up a few things we'll need, such as a hoyer lift and a wheelchair van so we can get around with Dear Son. We also expressed concern of having a place to change him and they have already worked that out. (He wears diapers.) What is surprising is that they think of everything. They have arranged for diapers and formula for Dear Son as well. I would not have imagined that they would supply those nor did we ask.

One other thing that has been especially nice is our Make a Wish volunteers. One of them invited me on facebook and I've had the pleasure of getting to know her a little better and meeting her family. It's really made the whole wish experience a little nicer.

And the best part about the trip being granted, is that it is just in time for my birthday which is today. I can't think of a better birthday wish than to have the trip of a lifetime granted for my darling son. To see him smile will be the best part of the trip.

Happy 4th of July...A Lazy Summer Day

2009-07-04T15:20:00.010-05:00

Dear Son and I enjoy taking walks in our area. I thought I might show you the walking trail near our apartment. It was one of the reasons I moved here. I think it's important to have a nice trail close to home, so it's easy to use. We walk this most days from June through October. I took the photos in order along the trail. Walking across the street, we start at the clubhouse of our apartment complex.

Going around the clubhouse is the swing (not pictured) which overlooks the river that runs along the apartment complex and golf course. The trail runs parallel to the clubhouse swimming pool, which is in the background. Our pool is quite nice, complete with fountains and pretty landscaping.

It's always relaxing walking along the trail and looking out over the river. We see a lot of ducks here and the red winged blackbirds are his favorite; they sing to him all of the time.

The bunnies come out here. We also see some beautiful butterflies in this area. These are the townhomes next to our apartment complex.

Passing more luxury townhomes.

I always love the look of paths in an area.

We see the blue herons in this area along the riverbank.

There are many bridges over the river. We are standing on one looking over the river and golf course. We've walked about a quarter of a mile at this point, not very far.

On the opposite side of the golf course are the homes that back up to the golf course. We love the pretty flowers here.

This is one of my favorite areas.

A nice picture of Dear Son and his pretty blue eyes. He is always quiet for most of our walks but he really loves them. It's getting a bit hard to push him though. The trail is not quite level; something you wouldn't notice if you were walking alone but something that is quite noticeable if you are trying to balance and push a hundred pound wheelchair with a young man in it!

Looking across the golf course. Our apartment complex in on the left in the rear of the picture.

More views of the golf course and nature area.

We are at the one mile mark about now. The entire trail is about 2.85 miles, or at least that is what we typically walk.

We walked to the end and are heading back home now.

I love this area here. Very secluded and tranquil. We see lots of squirrels and hear some beautiful song birds in this area.

Only 1/4 of a mile from home now. I love these bushes.

Almost home. Dear Son loves the sounds of the fountains in the front of our clubhouse. He always looks at them when we pass them.

Done! Time for a nap in the chair. Wiggles, our cat is eyeing the top of the chair, his favorite spot.
Notice his short legs!

We hope you enjoyed our little walk. I hope you get some time to get out and enjoy the weather and take some time to relax.

As for Dear Son, he's been having a hard time these past few days. He had another big seizure on Wednesday and couldn't go to school. Ped Neuro Doc increased one of his meds however it may take a bit for us to see the effect. Dear Son continues to have seizures, along with some severe choking episodes at night. I haven't slept much in the last two days and neither has he. Typically, I see more choking episodes as the seizures increase. Last night was a bit better than the night before and I am hoping we get some sleep tonight. He continues to be agitated and restless at times, which I suspect are also seizure related.

Have a wonderful holiday.

Organization Friday-Putting Things Away, The Stumbling Block

2009-07-03T13:23:00.006-05:00

Fringe Lace Glass Plate

Recently, while watching the reality show “Kendra” on E!, Kendra stands in her the living room of her house with clothes all over the living room floor. Lots of them. She wants to get the place cleaned up before her fiancé comes over. She looks at the clothes and she says that she wants to get the place cleaned up so he really doesn’t see the real “her”. And that’s when it gets interesting. She has this look on her face that I have seen many times before. It’s a look of total frustration and total honesty. She really does want to get the place cleaned up but she has absolutely no clue on how to get there. It’s probably one of the most honest moments in the show and one I see a lot.

More often than not, most of the people I work with have no clue how to get there. They know what they want: a clean and organized space. We look at the magazines and they are filled with beautiful pictures of beautiful spaces. They make it look so easy. And then they say things like, “A place for everything and everything in it’s place.” But the truth of the matter, it’s not always easy if you don’t know what you are doing. Add to that, all of the messages that you have programmed in over the years from your mother, your family and whoever, it’s no wonder people get depressed when they think about getting organized.

Kendra’s situation is not unlike many of the people I work with. It doesn’t matter if it’s clothes or paper and more often than not, most of my projects start with the home office. But at some point, regardless of whatever project we start, we get the space organized and at that time, I put a routine in place for the client. A routine is a series of steps that is the absolute shortest way to get from point A to point B. We all want everything fast and easy today but it’s surprising how many people get caught up in one simple step: putting things away. So often, many women are so used to not knowing where to put anything that once they have a spot, they don’t follow through with the last step of putting items away. It is the single obstacle that must be overcome or you will always be spending more time and energy trying to keep up your home. If you are not in the habit and don’t make it a priority, you will never maintain your space. Any space.

Probably the one time of day where I see a lot of homes drop the ball, is the after work or after school routine. During those times, everyone is tired and most things are just dropped right inside the door, the nearest counter or the nearest flat surface. On top of that, add the mail and all of those papers from school, all of the electronic devices and you have one big mess. Once that is done, everyone is hungry, dinner is started or picked up on the way home, and another mess is underway.

But it doesn’t have to be that way. With a few simple changes, you can keep your space organized and beautiful. And here’s how. I’ll talk about my own routine to illustrate the concept.

The first step once you get in the door is to put your keys away. I place mine in a pretty wrought iron, nature inspired dish. You can use a dish, like the one in the photo, a plate or simply a gorgeous hook. Whatever it is, make it both functional and beautiful. By making it beautiful, you are more often to use it and keep it nice. Now you know where your keys are for tomorrow. If you have multiple drivers, create a space near the door for each person. I might suggest a chest of drawers near the entry giving each person their special place in a drawer for keys and such or something on the wall that can handle multiple sets of keys.

Hang up your coat and remove your shoes. I have a series of hooks near the door to hang our coats however notice I didn’t say hang “all” of your coats. Just the coat you wear. I place gloves in the foyer closet near the door so they don’t sit out. Ditto for shoes.

As you create your space near the door, I would like you to think of this as a bit of a sanctuary. When you come home, it’s the first thing you see. Keep it uncluttered and beautiful. You don’t need to see every coat and every pair of shoes the family has. This is especially important if you want to feel peace and serenity when you walk through the door.

Next, remove your electronic devices and charge them. You should have a special place to charge them, preferably near your keys however if there isn’t room for a charging station, select another spot. Just make it consistent.

Unpack your bags. If you carry a bag of sorts, empty everything in your bag and put it away. I carry a bag with my business supplies and a client notebook. I put the notebook in the office and file the bag. At this time, I stock the bag with anything that is needed so I can get out the door easily the next time. If I worked that day, I take a moment to record any income and expenses for that day, add items to my supply list and add any clients tasks to my weekly planner (to do list).

If you have groceries, put all of the groceries away. Do this before you do anything else.

Next, check for phone messages. I keep a spiral notebook for all phone messages near the phone. It doesn’t have to be formal, just pick one spot. I try to return my calls right away or if it’s late, the next morning. I delete the message immediately. You can also check your voice mail on-line. If you do, then make the call or add it to your to do list, whatever that might be.

For mail, I open it all and toss out the envelopes and extras. Bills are place in the bill notebook in the file drawer. Invitations are noted on the calendar and rsvp noted on the to-do list as well as dates to get gifts/cards, etc. I file the invitation in my HOME manual (Home Organization Manual for Efficiency-this is a Dream Organizer product/concept.). (When the time comes, I just pull the invitation.) If there are action items, I put them in my in box and try to manage them that evening or early the next morning. I try to keep my desk free of any paper.

Once Dear Son arrives, I unpack his wheelchair-his lunch pack, his backpack and his clothes. I re-pack his backpack and lunch pack for the next morning. This takes all of five minutes. He is now ready for the next day. I sign any papers and put them in his backpack for the next day. Since he needs a feeding pump that is sent to school, and since I need to use it that evening and the next morning, I place a reminder sheet that I have in plastic on the seat of his wheelchair as a visual reminder to place it in his backpack.

And that’s it. The key here is putting things away before starting another project or before starting dinner. You can’t expect to keep your home clean and organized if you never put things away. And you also may not be able to find things when you need it. I thought of a silly analogy to drive the point home. Imagine for a moment that instead of parking your car in the garage every evening, where it belongs, that you parked it in any one of a dozen spots near your home instead. Say, one day, you had a meeting at school so your parked it there. Another day, you watched a soccer game so you parked it at the field. If I told you to do that, you would tell me I am absolutely insane. You would tell me that it doesn’t make any sense. You would argue that the best place to park would be your garage where it would be every morning making it easy for your to leave home. You would tell me that you waste a lot of time every morning trying to remember where you left your car or that it took too much time to get there.

And that is why you need to make it a habit to put things away. It’s the shortest and fastest way to find anything you need the next day. So the next time you are tempted to leave your stuff out, just remember the garage analogy. If nothing else, you’ll get a laugh.

Note: I am a Professional Organizer and Home Stager. I own my own business called, “Dream Organizers”. My motto is: “Keep it simple. Get organized. Make it beautiful.”

...The "Organization Friday" feature is back by popular request!

Aspiring to Give Great Care, Taking Parenting to the Next Level

2009-07-01T10:00:00.001-05:00

"It is not how much we give, but how much love we put into giving." ~Mother Teresa

I remember the Individual Education Plans (IEPs) at school. Once a year, I would receive the invitation to attend and every year I would attend. The IEPs is where the education planning for a special needs child would take place. During that time, the goals would be discussed and whatever accommodations that were required, would be included so the education plan could be carried out. It was a bit intimidating at first. I would walk into the room, with twelve other people. The principal would often attend at those times, plus the Special Education Administrator for the district, all of the therapists-physical, occupational and speech, along with his teachers. It was intimidating because I wasn’t certain of this process and how it worked and I wanted to make sure I did my best. I didn’t have any training in these IEPs but I knew they were important. It was also challenging because whatever accommodations needed to be made, often cost money, something that any school district, never had enough of. For example, when your child required a one on one aide to assist them in the classroom, well, that cost money. My job was to secure the aide, their job was to conserve their dollars. I needed to attend these meetings, be present, and be fully prepared to state my case, so that I could negotiate the absolute best education for Dear Son. The key word here is “negotiate” because that is what you had to do.

It was difficult for me in those early days, having to learn the whole IEP system and to negotiate for Dear Son. I would make sure on the day of the IEP, that I was impeccably groomed, my hair and nails were perfect and that I always wore a suit. This was the early nineties and that is what professional women did. I wore a suit to these IEPs not because I had to, but because I wanted to send a message that I expected the best for Dear Son and I would take nothing less. The other thing that made it easier for me, was not to view myself at Dear Son’s mother, who was negotiating his education, but to view Dear Son as my “client”. When I was at work and working with clients, I always wanted to give my best to them. And who should I advocate more for, than Dear Son? Once I viewed Dear Son as my “client” it was a lot easier for me to go into these meetings and negotiate his education since it took a little of the emotion out of the equation and made it easier for me to be firm with them on what I wanted. And they did take me seriously.

I remember taking the time weeks before the IEP, to create some good goals for Dear Son and then created a list of what I wanted for him that year. His physical and mental disabilities were so profound that he required a one on one aide. For that, I would get a letter from his physician detailing his need for the aide. Some years, I would sit at the table in the meeting for a long time, because I would refuse to budge on an issue for Dear Son. In order for an IEP to work, everyone in the room had to come to an agreement. Meaning the district would agree to pay for the services before they would put it in writing. And with the plethora of special needs children and a limited number of dollars, their goals were to conserve dollars whenever they could. My goal, as Dear Son’s mother, was to negotiate the absolute best education that I could for him, to give him the best chance at maximizing potential. They learned that we could work out an agreement ahead of time, or we’d be sitting at that table, a very long while.

It wasn’t long before the district coordinator would contact me a few weeks prior to our IEP. At that time, she would ask me for my goals and what I was looking for in terms of Dear Son’s education. I would know in my head what I wanted for Dear Son so I would ask for the moon, knowing that I would negotiate from there, giving up some things and then ultimately sealing the deal with precisely what I felt was best for Dear Son. Some years, I had to hire an attorney to get some input on the law to back up my case.These meetings/calls were tense at first but over the years, we became good friends. She knew that I wanted the best for Dear Son and I knew that her job was to conserve dollars. To negotiate the best for him, meant understanding the state laws, understanding the IEP process and knowing what could and could not be done.

But the IEP was just one example of giving my best to Dear Son. I made it my goal a long time ago, to give him the best care that I possibly could. That means, negotiating for the best education, getting him the best medical care and most important giving him my best every day.

Every time, he is released from the hospital, I am grateful. I view the fact that he recovered and that I have more days to spend with him as a gift. Each time, I know we are closer to the end. And because of that, every day is precious. I am so thankful that I get the opportunity to care for him. I try to show that in my actions. Not just giving him his meds on time or changing all of his diapers, but in my attitude. It’s starting every day with a smile and kisses. It’s being excited to see him. It’s taking the time to write up the instructions for summer school so that everyone has what they need and that Dear Son gets his feeding on time. It’s making the extra calls so that he receives the air conditioned bus since he can’t sweat and can overheat easily. It’s taking the time every day after school to read the note together about what happened that day and talking to him about it. It’s constantly raising the bar for myself and for others so that he has the best care that he can and the best life. It’s what I would want for my most cherished possession, my Dear Son.

And that brings me to how we spend our time. I was thinking today that as a nation, we don’t put enough time into our children. I mean, how often do we google things on the internet like, how to improve our diets, how to improve our health, how to save money or how to do just about anything. Or when we look at continuing education…how often are we taking classes to stay competitive in our field? But where are the classes on how to be a good mother or father or how to be a better parent? Who googles that when the kids are ten years old?

And how many of us can define our neighbors by their hobbies? We know the neighbor that is passionate about their yard or their flowers or the man is always washing and detailing his car and parks it at an angle in their own garage, as if it were a showroom. But which one is the neighbor that gives their children the best “care” every day or who puts their children first? You have to think hard about that one.

We see parenting examples all the time, not all of them good. We have the whole Jon and Kate Plus Eight saga of a family in crisis and yet, the show, I mean money, must go on. Talk about selling out for your children. I don’t think airing the family’s crisis and dirty laundry for millions to watch is giving the best to your children. I never thought Kate was the best parent and her total lack of disrespect for her husband, for all of the children to see, along with her controlling ways, is a train wreck. Certainly Jon plays a part in this but the mental abuse of Jon is over the top. I stopped watching that show many years ago. I can’t figure out for a minute why this woman isn’t in therapy. The children never seem happy and are always crying and yet she goes out on speaking tours. Is this something we want any parent to emulate?

And then we have the Duggar family with eighteen children. You have wonderful parents, with great values who live their religion and who give their time to them. You see that difference and yet, those people are wonderful parents and yet, the Jon and Kate, gets more press.

I often see parents of children spend a lot of time saving for college or working on getting material things for their children, yet are too busy texting on their blackberry to be fully present in the moment with their kids at the park. Dear Son and I walk a lot and I can’t tell you the number of times the parent is on the phone while out with the kids on a walk.

Giving great care to our children, and especially special needs children, is a goal we need to aspire to. And great care means not only what we can provide, but how we interact with them and giving our time to them. It’s making them our first priority and not our last.

I remember teaching a class on organizing for special needs children last year. I was talking to one of the parents and she had an issue at school with her daughter not wanting to eat for the staff and the staff not understanding how to feed her. As a result, the child didn’t eat all day and then consume a ton of calories when she got home at 3:30 p.m. I talked to the mother on how that wasn’t o.k. and that no child should go to school and not eat all day. We wouldn’t do it and we shouldn’t allow it to happen for our kids. Instead, I talked to her and gave her some suggestions on how she could include certain things in the IEP so that her daughter could get help with the feeding and then going to school to make sure that the staff understood how to feed her daughter and that it was getting done. It was difficult for this mother to speak up so that factored in to the issue as well. These things are the important things in life.

Caring for special needs children is time consuming, monotonous and very often boring. There are days when I used to think if I have to change another diaper, I was going to scream. But what changed all of that was Dear Son’s hospitalizations. Each time he pulled through, I would be thankful for my “gift”. I would treat every day thereafter as something special, another day that I got to spend my Dear Son. Every day became an opportunity to get in some more memories, to see him grow or to see him smile. I learned to change those diapers happily for changing them was always better than not having one to change.

But where is the reward in good care? Where is the reward in making your children’s life better? I was changing Dear Son’s fourth diaper yesterday in just over two hours. He managed to have his bowel movements separate from his urinations making for a lot of work. Changing a diaper for a 185 pound man who can’t roll over on his own, is a lot more work than for a one year old child. I changed diaper after diaper, among other things. It seemed like the morning would never end and yet it was only 8:30 a.m. As I finished the fourth diaper, Dear Son moved his left elbow up in the air slightly. Dear Son has never had any control of his arms and hands his whole life. Just this last year, through a lot of hard work by his teacher, he has gained some control of them. Each day, I check his left arm, if it’s loose and not tense, I know he can give me a hug. I wrap it around my neck and I give Dear Son a hug back and kiss his neck repeatedly. He smiles the whole time and has a sparkle in his eye. So when he raised his arm up, I took it and tried to wrap it around my neck for a hug, but it was too tight and he couldn’t do it. Instead, I wrapped my arms around him to kiss his neck. When I leaned over he gave me a big lick on my cheek, which is how he gives a kiss. I thought to myself that this is the reward for great care. A giant lick. And that is something to aspire to.

Note: Dear Son is seventeen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation. You can read more about Dear Son and his mutation in the Journal of Neurology. The link is in my sidebar.

Photo Credits: The above photo is of my living room.

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FYI-The other day I had a problem posting in blogger because I could not copy from Microsoft Word and paste into blogger. The problem was due to my recent upgrade to Internet Explorer 8; I uninstalled IE8 last night and I no longer have the issue. I am still having an issue getting my feeds to update. If anyone has a solution for that, I'd love to hear it.

Make a Wish Update and Other Stuff

2009-06-29T22:20:00.002-05:00

Last week, volunteers from the Make a Wish Foundation came to our home to talk about our wish. Thankfully, I printed off all of the lovely suggestions everyone gave me when I asked for suggestions for our wish. That was really helpful. The volunteers were so gracious and even brought Dear Son a gift! Dear Son had been having some medical issues in the days preceding their visit so I wasn't certain that he would be awake for their visit since they came at 7 p.m. I managed to get him up and into the rocking chair and he laid his head on a pillow on the table while we talked about the trip. After a while, Dad transitioned him to the new swivel recliner and he fell alseep. We talked to them about Dear Son's favorite things-Barney, listening to country music, his love of animals and swimming and tried to build around that. I also talked to them about his medical needs for the trip. We need a hoyer lift and IV pole for the room as well as some other things. As for other wishes, we asked them for suggestions however they didn't really give us any ideas. The only request I gave them was that I need things to be easy since it can be hard getting around with Dear Son.

They asked us a ton of questions and basically filled out a bunch of forms. We had to show proof of our driver's license, auto insurance and give them a copy of Dear Son's birth certificate. They asked us all kinds of questions-did we have our own luggage, what kind of camera we had and then specifically, how much storage on the camera. It was an interesting experience. They also gave us a choice on publicity, you either agree to it and refuse it. We agreed to it since I feel if someone is nice enough to grant you a wish, you should be gracious enough to allow them to photograph that.

The next step is the trip needs to be approved. Once that is done, they'll check with his physician to see if Dear Son can manage the trip. This should take around thirty days or so. If the trip is denied, then you or they come up with a different wish. We are open to suggestions and are simply appreciative that they would even grant Dear Son a wish!

Trips take three to six months to plan, according to the foundation. We are hoping to take the trip in early November, when Dear Son turns eighteen. I think that would be a lot of fun to do this trip on his birthday and then we'll always have these memories. My dream is that I see Dear Son's smiling face the entire time. If we can do things that make him happy, I will be excited. We have to take the trip during cooler months since Dear Son can't sweat, with the patch he wears (He wears a scopolamine patch to dry up secretions in his throat since he can't manage them. As a result of the patch, it does not allow him to sweat so he can overheat easily, hence the trip must be made when the temperature is cooler.)

We are really looking forward to this. After his last hospitalization, I knew that we needed to do something fun. I don't think Dear Son will survive another pneumonia. I can see Dear Son is getting weaker and is losing his ability to sit up. I hope he can endure the plane ride since he won't have a supportive seat, like we do for his wheelchair. I also don't know if he can physically sit up that long, without leaning on anything. And then there is the issue of trying to get him into an airplane seat. Currently, I use a hoyer lift to get him into his wheelchair. If Dad lifts him into the seat, then he is going to need some room in order to lift him.

We also have to figure out what we will do in terms of changing him. We need to lie Dear Son down to change him so we'll have to figure out how to do all of this at the airport since we can't do it on the plane. I really don't want to do a Texas catheter for the trip. Once we get approved, we'll have to check into the weight restrictions on the luggage and may need to have his formula shipped ahead of time. The Make a Wish Foundation has a travel coordinator that will get in touch with us once the trip is approved. They do this every day so hopefully they can make things easier for us.

Other than the trip, it's been a busy week. Prior to Father's Day, Dear Son began having more seizures and then some other medical issues. His feet started swelling, his legs turned blue and cold and the bottom of his foot was burning up. In addition to the seizures, he began sleeping excessively, around 20 plus hours a day and I could not arouse him. The day after Father's Day, he woke up at 5:30 in the morning with a seizure that last twenty five minutes. I tried using his vagus nerve stimulator but it didn't stop the seizure. I then administered his morning meds and the seizure kept getting worse. Finally, I had to administer Diastat, a rectal valium, and the seizure finally subsided. It took a few days for him to get back to normal but I think he's starting to feel better. I am finally getting some rest as well.

After that, summer school started and it's been a lot of work getting everything together. While I keep a template on my pc of last year's instructions for school, it still takes a while for everyone to get on board. Probably the biggest issue I had last week was the school bus. Due to Dear Son's inability to sweat and his weak lungs, he requires an air conditioned bus. It's in the Individual Education Plan (IEP) however for some reason, the school failed to notify the bus company that he required an air conditioned bus. I had to make several calls and after four days, they were able to get the bus issue resolved. The school apologized saying it was their error and the bus company had apologized as well, saying they didn't receive any notice. I understand those things happen however I was worried that he might have an emergency in the interim.

Dear Son is enjoying himself however. Every Tuesday and Thursday, the special education recreation organization offers extended days with extra activities. On Tuesdays, they stay in house but do various projects with art or music. Our cat Wiggles likes the art projects best, because he likes to play with them. When he does, it makes Dear Son laugh so it's extra enjoyable. On Thursdays, they go on field trips. These extended days allow me to work without hiring a sitter. His favorite days are Wednesdays and Fridays because he's down at the pool. His high school teacher saw him last week and said he was just glowing; he was so happy to be at the pool!

Finally, I am having some issues with blogger. Recently, I upgraded to IE8 and some people are experiencing the same issue that I am, being unable to copy and paste from Word into blogger. I typically write my stories in Word and then cut and paste them into blogger so this is a major issue! I don' t know of a work around. Posts like this I can write in blogger however my stories I like to write in Word.

I will try to post more often, now that summer school is underway. Oh, the bills for the May hospitalization have arrived. The billed charges, before discounts, were $254k; 92k was for the vagus nerve stimulator surgery to replace the battery (actually they put in a newer model) and $162k was for the ICU and the rest of the stay. Year to date billed charges are in excess of $330,000. Hospital bills arrive daily however thankfully, we have now met our stop loss.

Delay

2009-06-28T11:32:00.002-05:00

I am sorry about the delay in posting. I wrote a post this morning in Microsoft Word and I can't get the "paste" function to work. I will try again later this evening.

Thank you for your patience.

Happy Father's Day

2009-06-21T10:32:00.004-05:00

Dear Son's Dad

Happy Father's Day to Dear Son's Dad and all of the fathers today. Dear Son has been blessed with a great Dad who is always there to help. As Dear Son weakens, we rely on Dad more. Now that I can no longer lift Dear Son in and out of the car, Dad needs to accompany us on all doctor visits, along with all other visits. The list of his visits seems to grow longer every day. In August alone, we have senior portraits, a visit to the orthotics place, the pulmonary doc and the pediatric neurologist among other things.

Here is Dear Son's new recliner/rocker we got on Craigslist for $150.

Dad helps out financially too, without my asking. In May, when Dear Son was hospitalized for weeks, he paid for all of my parking at the hospital, which was a few hundred dollars; then there was the summer school after school program, another couple hundred dollars, along with all of the medical co-pays, another $500 plus dollars and today, we are getting a new (to us) leather recliner for Dear Son from Craigslist, since Dear Son is losing his ability to sit up in his rocker. I could never do all of this working part time plus taking care of Dear Son 24/7.

But it's not just physical and financial help that he gives Dear Son. He brings a great attitude when he comes over and tries to make Dear Son laugh. He worries about the little things with Dear Son and takes good care of him when it's his weekend. I can rest easy at those times and not worry about Dear Son.

Taking care of Dear Son is not an easy task, especially now that he has grown so much and continues to grow! Raising a child, and especially a special needs child, is not a one person task. I could never provide the good care that I do without the support and assistance from Dad. He works with me to help provide the best care we can for our son, even though we are divorced. And for that, I am thankful. So today, we'll honor Dad on his special day. We only wish all special needs children were as lucky. For they could use a father like him.

Dear Son Approved for the "Make a Wish"

2009-06-12T23:22:00.007-05:00

Photo of Dear Son at summer school last July. He loves the pool or rather, he just lies in the water and floats for 45 minutes while his aide holds him the entire time. He zones out the entire time. He can't wait to get in the water though and as soon as he gets to his "spot" in the water, he closes his eyes and doesn't open them until it's time to get out.

While Dear Son was in the Intensive Care Unit last month, I had plenty of time to reflect on his life. As time goes on, his lungs are getting progressively weaker. He can no longer sustain either the Bi-Pap or C-Pap machines and there was much discussion as to whether he could survive an extubation, had he been placed on a ventilator. His throat muscles have deteriorated that he hasn't been able to process his secretions for some time now. In 2004, he got the g-tube, in 2006, he went on g-tube feedings and hasn't been able to eat anything by mouth since then. In addition, they tell me that they think he aspirates all the time. I have known for some time now that he has a progressive condition and that he will not recover. It is my understanding that he will most likely die from pneumonia so every hospitalization is like a race against time. As he lie in the bed, I felt that life for him, just hadn't been very fair. Any mother wants her child to have a good life, wants her child to be happy and to have it all. Dear Son however, has had almost sixty hospitalizations in his seventeen years. Far too many, if you ask me. Each time, we get a little closer to the end and I worry that one of these times, it will be over. I decided when he was there that I wanted to make sure that we would do something really fun while he could still enjoy it.

Last Sunday evening, I decided to check out the, "Make a Wish Foundation". I read the requirements and Dear Son easily met them so I completed the online form. On Monday, the local office called and on Tuesday I returned the call to the foundation. They asked me a few questions including his diagnosis and his doctor's name. They faxed a form and called his pediatric neurologist and by 10 a.m. on Wednesday morning, Dear Son had been approved for a wish.

While the other kids splash in the pool, Dear Son just floats the entire time.

Volunteers for the, "Make a Wish" foundation will come here within the next thirty days to discuss his wish and it will take three to six months for a wish to be granted. Now comes the hard part, picking a wish that he will love. And that's where I could use your help.

Dear Son loves people, animals and loves the outdoors. He loves swimming (o.k. maybe just floating in the pool) and country music. I think I would like to take a trip somewhere with him (his father will go on the trip as well) since the only place I usually pack for is the hospital. Also, since it's so hard to get around, it would be great to have someone make the trip easier for us. I have thought it might be fun for him to swim with the dolphins or to go to Nashville or some country music place. I'd also love it if he could get a therapeutic massage. I'd like him to have a lot of fun and to be pampered. If you know of someone who had a trip or if you have any ideas for him, I'd love to hear them. Dear Son has no real use of his hands or arms, can not speak, is not toilet trained and can not stand or weight bear at all. Keep that in mind as you think about things that he may enjoy.

Finally, Dear Son will be out of school until summer school starts on June 22nd. I probably won't be posting as much since I will be caring for him 24/7 on most days, along with work and doctor appointments. I'll do the best I can. On Monday, he'll receive a $3,000 custom back to his wheelchair that will better support him now that he can no longer sit up without falling over to the side.

Note: Dear Son is seventeen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation. He also appeared in the Journal of Neurology a few years ago.

This is Not Your Father's Hospital Bed-Part III: Looking Forward Instead of Looking Back

2009-06-03T20:00:00.004-05:00

Before Photo: This is what a typical standard hospital bed looks like when they ship it to you. Note the universal headboard and footboard.

After Photo: This is Dear Son's new Tendercare Bed. The Tendercare bed features a patented "slip over" headboard and footboard; the headboard and footboard just slip over the hospital bed. The hospital bed remains fully functional.

I remember being the in the Pediatric Intensive Care Unit (PICU) with Dear Son, just a few weeks ago, wondering if I would get to take him home. We are getting to the point, where one of these times, he is not going to make it. I was hoping and praying that this would not be the time, knowing full well, that all of his time is currently “borrowed”. As the chest x-rays flip flopped, I became more worried, one day they would be worse, the next day no change and then the following day, it would be a little worse. One tell tale clue that things are generally not going well, is how long you stay in the PICU; I usually will ask how long Dear Son will be there, so I can schedule my work around it. When I asked this time, they said two weeks. Today, hospitals move you in and move you out so when you stay in the PICU you, you know you are in serious trouble.

A close up of the nightstand. I made the lampshade.

Luckily, Dear Son made it through. Once he was transferred to the Pediatric floor, I began to think about going home. Once you have been there long enough, you know the steps: PICU first, Step Down, pediatric floor then home. But there was something different this time, Dear Son was getting his new hospital bed and we had been waiting for it to be shipped. We had something to look forward to.

Looking forward to something, is not something that happens very often when you care for someone chronically ill. Your life somehow changes over the years, as his needs increase, my life as I used to know it, disappears. My life and his life become melded into one where survival for both of us, is the only goal.

Before Photo: This is what a standard hospital bed looks like when they ship it to you. Most are used and nearly all come in this awful brown color. In the first photo above, I painted the headboard and footboard black.

I remember many years back, when they recommended a hospital bed. It was very depressing. The hospital beds, most of them used, are shipped to your house. More often than not, they bill the insurance for the bed as a rental, until the purchase price is met, then it becomes yours. Yippee. Not. No one wants an ugly, used, hospital bed as their bed. And what’s worse is that the worse the patient gets, the more time you get to spend there. Not only are they ugly, but your bedroom begins to look more like a hospital room and less like a home. And that is where our new bed comes in.

Gary Owens, started Tendercare Beds, a short time ago. As a woodworker, he created a bed for his wife, Gina, who had a hospital bed of her own. With his slip on, slip off, headboards and footboards, he changed an industry. No longer are hospital beds something to be avoided, but now they are something you can have, and be proud of. It no longer matters if the insurance company only pays for a used hospital bed, because you can make it new with a Tendercare bed. You no longer have to be ashamed to get a hospital bed for your loved one. You no longer have to be ashamed to let someone see your bedroom. But most of all, you don’t have take away your kid’s bed, and replace it a hospital bed. Can you really look your child in the eye, and tell them they are going to get better, when you bring in a used hospital bed? And who looks forward to that?

But with our Tendercare bed, we were definitely looking forward to that. We had placed our order for a black, raised panel bed. It would look perfect in Dear Son’s bedroom. More important than that, he would have a “real” headboard. Not a fake, bamboo blind headboard that I made, so he would have something, but a real one. And we all know that having a “real” headboard on your bed, is good feng shui. And when you are sick, it’s important to pay attention to that.

Here is Dear Son's Tendercare bed with the side rail up. The bed remains fully functional with the slip-on headboards and footboards.

On Monday, our headboard arrived and it did not disappoint. It was absolutely beautiful and brought tears to my eyes. Dear Son had a real bed. A real bed that still met his needs. I could still operate the hospital bed, raise and lower the bed, pull up the side rails, raise the head or the foot of the bed and no matter what I did, it would still look beautiful!

But the best part of all, was seeing Dear Son’s face. We had been talking about the bed for some time now. When he got the hospital bed the first time, from the durable medical equipment supplier, there was nothing to talk about. I had talked to the DME about getting him a brand new hospital bed, so we didn’t have to have an ugly used one, but that was just to make the idea of a hospital bed palatable. But this time, I could get excited about the bed and Dear Son could too! He came home from school and I wheeled his wheelchair straight into the bedroom. He looked right at his new bed and broke out in a big smile. His eyes lit up and he couldn’t stop smiling. Later, when I layed him in the bed for the first time, he looked straight up at the headboard with a big grin on his face. You could see it in his eyes, that he was happy. And that was the best part!

I called Gary to thank him for making this lovely bed for Dear Son. Gary had contacted me when he first started his business, asking me what I thought of his bed. I told him it was a fantastic idea and I thought many retailers would be happy to sell his beds. I told him that I imagined Pottery Barn and Nieman Marcus would want to carry his beds. After all, they are really nice. He made this bed especially for Dear Son and it’s the first time he used the third panel in the raised panel design. You can see this third panel on top of the raised panels on the headboard. I think this bed is just beautiful.

Note the third panel. This is the piece that is above the pillow sham. The raised panels sit behind the pillow sham.Here is a view of the headboard. You can see the two raised panels and then the third panel above. Can you believe it's a hospital bed?

Here is a picture of the head of the bed in the "raised" position. As you can see, the bed remains fully functional.

But what’s really amazing, is that he’s changed an industry. No longer do the Durable Medical Equipment (DME) providers have to sit back and wait for people to call them when they need a hospital bed. No, they can actually tell people that they have a hospital bed they will want. And therein lies the beauty of a Tendercare Bed. A Tendercare Bed is not only a bed that meets your needs, but a bed you will want. You don’t have to be ashamed to get your child this bed, or your wife this bed or your brother or sister this bed. You can order this bed and be proud. But the best part of this bed, is that when they get it, they will cry with tears of joy, not tears of sadness. Because when you get a hospital bed, that’s what used to happen, you would cry. You would cry because you lost your own bed, you would cry for what was coming ahead and you would cry for the life you were leaving behind. If you know of anyone who got a hospital bed, you will know that is true. They not only cry, they will beg you not to put them in a hospital bed. But this time is really different. Now you can cry for joy. And that’s exactly what I did when I saw Dear Son’s bed. I cried. It was beautiful.

Note: Dear Son suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation.

Gary Owens is the owner of Tendercare Beds. If you would like more information or to purchase a Tendercare Bed, you can contact Tendercare Beds here.

Sneak Peek! A Child's Playroom Makeover

2009-05-29T11:17:00.008-05:00

This is the valence that I made from a single drapery panel. I cut the panel, hemmed it with mending tape and then added black trim with black crystals.

I thought you might enjoy a sneak peek at a child's playroom makeover I am working on. I am in the final stages of the makeover and will showcase the complete before and after pictures in a few weeks. The bookshelf is on backorder and won't be delivered until June 24th. The floor has yet to be installed and I am waiting on shipment on the rug. In the meantime, here are the details:

This is the area rug I chose. I use this black rug to anchor all of the pattern I used in the room and to give the eye a place to rest.

Color scheme is lime green, black and white. Walls are lime green with black and white furniture and accessories. I chose black and white instead of pink since I feel that pink is so overdone for a young girl. I thought the black and white would be sophisticated but not overdone for seven years old.
The room is 10 x 10 and there will be a vanity area, a desk for homework and art, a reading area and a play area.
I made the valence using one drapery panel and then purchased some trim with some black crystals that will shine when the light comes through the window. I used the same fabric to upholster the desk chair.
The vanity area includes a small child's desk that I created into a vanity. It will have everything she needs to sit and do her hair, nails or make-up (just for play). I have used a common object in a new way to store her headbands. I am saving that as a surprise for you! All of the drawers are labeled. Her favorite part to date is the drawer to store her hairbrush! She said she never had a place for that before!
The desk area includes containers for markers, pens and pencils and overlooks the white flowering crab apple tree in the back yard. It was just magnificent a few weeks ago and looked beautiful against the lime green walls.

A narrow bookshelf will hold some books and a few knick knacks.

The reading area includes an upholstered chair that is also a recliner. The bookshelf will hold a few books and knick knacks.
The room will get a new maple laminate floor and I'll use a black area rug with white leaves on it.
The closet has been customized with wire shelving that is adjustable. That way the room can grow with her.

The chair is actually black and white although it looks cream in this picture. It's also pretty comfortable.

The little girl has seen the progress to date and loves it. Her mother says that she invites all of her friends over now to see her room. She tells them on the phone that, "It's not Hannah Montana but it's black and white". The other day she came home and I had just finished putting on the black and white stickers on some of the decorative objects and she called her Dad up to show him all of the items. She showed him how the desk is just perfect to do her homework and then showed him how she can read in the chair. What is great is that she takes great pride in keeping the room fairly neat and organized. Since the room was done over several visits, I made a rule that once something was organized, she had to keep it that way. She's done a great job.

I found these packages in the scrapbook aisle at Target. They were approximately $1 each. I used these to decorate some wall decor. I used the "clipboard alphas" and spelled out her name. I sealed all of the wall decor with Modge Podge. I wasn't too sure about this idea however it was the little girl's favorite. I used the rub ons and transparencies on top of her dressing table. It has a glass top and I simply cut and placed these items on the top beneath the glass.

I used two of these chest of drawers on either side of the desk. I ordered them in white. We had glass tops made to keep them from scratching and I topped each of them with some black and white paper.

While checking out black and white items, I found this blog devoted solely to black and white. It is called, "Black and White Delight".

Note: I am a Professional Organizer and Home Stager. I run a business called, "Dream Organizers"; my motto is, "Keep it simple. Get organized. Make it beautiful."

Tablescape Thursday-Ladies Who Lunch!

2009-05-27T19:30:00.005-05:00

A simple and pretty pink tablescape.

After spending most of March in the Intensive Care Unit with Dear Son, it feels good to get back to doing something fun and creative. At the hospital, my tablescape consisted of a waterproof pad for a tablecloth, that I placed on the rolling hospital tray, mainly to prevent any germs from getting on my plastic (gasp!) dinnerware that I take to the hospital for such events. I have found over the years that it's better to take my own silverware, cups and plates than to scrounge around in the hospital break rooms looking for plates. I don't own nor do I like paper plates, foam plates or anything plastic to be used at a dinner table. That's just me.

So this week, I have decided to have lunch with a friend of mine. I found these beautiful pink tulips at Trader Joe's while picking up some Ahi tuna for lunch. Lunch today will be salads with romaine lettuce, mandarin oranges, toasted walnuts and some marinated Ahi tuna steaks with a slice of garlic toast. Pink, green and cream have long been the colors in my home so it was only fitting that I create a pink, green and white tablescape for this week's lunch.

Pink tulips, a cherub and a pretty vase.

Covers from my favorite magazine, Veranda, repeat the tablescape colors.

A white tablecloth, a few candles and a simple lunch.

I hope you have enjoyed my ladies tablescape. For more beautiful tablescapes, please visit Susan's blog at, "Between Naps on the Porch".

Note: I work part time as a Home Stager and Professional Organizer. I run a business called, "Dream Organizers"; my motto is, "Keep it simple. Get organized. Make it beautiful".

Concerned

2009-05-26T08:06:00.003-05:00

Dear Son spent most of the weekend sleeping although we managed to get in one small walk on Saturday and two on Sunday. Yesterday, he had a lot of choking issues-he seemed to choke on his saliva all day. I tried just about everything I could, making certain he was on his side, raising the hospital bed up high and sitting him up in the rocker. I worry he is getting sick again. It's not only the choking but the fact that he was extremely heavy yesterday, all dead weight. That's usually a telltale sign he's getting sick. At 180 pounds, that means that he is extremely hard to move. He can't roll over when he's well and when he's like that, it just about does me in. He also felt like he had a fever last night however I checked and he was fine. The ICU docs told me that they think Dear Son chronically aspirates any time he is lying down so I am concerned when I heard all of this choking. Last night, he yelled out many times during the night and there didn't seem to be anything I could do to console him. I hardly slept all night and neither did he.

In addition, he was supposed to have some labs drawn on Friday by a home health nurse. At discharge, they didn't tell me the agency name and while I could have called, sometimes, you hope things go just as they have set up, without my prompting every bit of the way. I have a friend who is a home health nurse and tried to have her draw them on Saturday however she didn't have any luck finding a good vein. Dear Son is pretty marked up from the hospitalizations and then add to that, the Scopolamine patch that dries up his secretions (also makes it hard to draw blood), it makes for a difficult draw. Dad will have to come over today and we'll have to take him to Big Academic Medical Center for the draws. He needs quite a few labs-5 seizure levels, plus CBC with differential, BMP and liver enzymes.

I finally finished nearly all of my medical paperwork from the hospital and in general for the last two weeks. There is always so much to do when I return home. Not only do I disinfect everything that was taken to the hospital and do all of the laundry but all emergency sheets are updated with the medicine changes, emergency bag is restocked, all medical records are updated with the surgery and hospitalization dates, everything gets filed, etc., etc. I have about five or six medical bills left that require some action but other than that, most of my paperwork is done. I probably did around twenty hours of paperwork alone over these past few days. That is my least favorite part!

I sent Dear Son to school today and hope things will improve.

2009-05-23T09:16:00.002-05:00

Photos of Dear Son at school during music on "Fun Friday".

Dear Son returned to school on Thursday for a half of a day. It's always hard to know precisely when to send him to school after a hospitalization. On the one hand, I want him to have some fun, especially after this hospitalization. He loves people and school makes him happy. On the other hand, I worry about pushing him too fast and I don't want a relapse. But staying home is sometimes boring for him.

I spoke with Ped Neuro Doc before we left and he said he could return to school on Wednesday or Thursday. Dear Son had been alert at the hospital and trying to get out of bed for a few days. I contacted the Special Needs Program Nurse at school and we agreed to try a half day on Thursday and then a full day on Friday, mainly because Friday is "Fun Friday" and they play a lot of games on that day. I really wanted him to be there for that.

On Thursday, he went to school for a half day. He didn't seem to know what was going on when he arrived but later, when one of the boys acted up, he woke up a bit, excited over the action and was back in the swing of things. As the day progressed, his eyes got heavy however the classroom nurse told me he seemed a little irritated he was sent home after only a half day. She made the analogy that it's kind of like going on vacation for a while and then coming home. Sometimes it takes a day or so to get acclimated again.

On Friday, he was back in full swing. He played color bingo, his favorite, and had music therapy. He took a forty minute nap during lunch. He had such a great time on Friday and was so happy, that his teacher sent me these photos in the middle of the day showing how much he enjoyed himself. Yay for Fun Friday! I guess I made the right decision after all!

After school, we sat outside for a little bit and then I put him to bed to sleep. He sleeps for a while and then woke up later in the evening. We will be staying put this weekend and happy about that. My plan is to take him for some walks and maybe even go to the local Memorial Day parade on Monday.

Next week should be pretty easy for him. There are a series of half days of school due to finals. That should allow him plenty of time to recover.

Dear Son Update- Home!

2009-05-21T05:56:00.003-05:00

Photo of Dear Son's hospital bed.

Dear Son was released on Tuesday afternoon, once the 24 hour EEG was completed. The EEG was a mess; it showed subclinical seizures (meaning the patient doesn't shake outwardly but the brain is still seizing) 24 hours a day. As you may recall, when the vagus nerve stimulator (VNS) was replaced, they start the settings lower and work their way up until it is at a therapeutic level for the patient. Because the battery on the prior VNS was low, the settings were really high to compensate for that. They can't set the new VNS to that level, since it could be too high, hence the start at a lower level. As a result of the EEG, Ped Neuro Doc increased the settings and increased one of his seizure medications and they'll send someone out on Friday for seizure drug levels.

The ambulance transported Dear Son home. Since Dear Son's VNS incision is not fully healed, Dad could not lift Dear Son into his SUV to take him home since he might tear the incision. Without a wheelchair van, Dad has to lift Dear Son under his arms to get him into the vehicle.

Once we arrived home, Dear Son sat in his favorite rocker. I turned on his music carousel, the one that he got for Christmas, and he layed his head on the table and smiled. Our cat, Wiggles, came over and gave him a big kiss (sniff) and I helped Dear Son pet him. Dad arrived and gave Dear Son a bath and then Dear Son went to bed.

He will return to school for a half day today and a full day tomorrow. Tomorrow is, "Fun Friday" and Dear Son's favorite day at school. They do all sorts of fun activities from dancing (he gets to pick his partner) to color bingo, his favorite. I thought it was important for him to have some fun after everything he has been through. School has been great throughout this hospitalization. I talked to the Program Nurse yesterday and we agreed to have Dear Son go for a half day today and if Dear Son gets through the half day, he can go a full day tomorrow. If it's too much, they'll arrange for transportation for another half day tomorrow. Due to the holiday on Monday, he'll have three days to rest up before next week. Next week, will be a series of half days so that should make it easier for him.

Thank you for all of your love, prayers and support for Dear Son. I know all of that, coupled with his good medical care, made all of the difference.

Dear Son Update-Almost Home!

2009-05-18T09:04:00.005-05:00

Things have improved since last Thursday. Dear Son is breathing on his own as of Saturday afternoon, although he had a little relapse Saturday night and needed more oxygen for a few hours. As of Sunday, he was breathing well on his own, without any distress. His oxygen saturations are around 94-96 now, which is much better.

This is a picture of the bathroom in the hospital room. In every room, there is a series of four tiles that depict children's artwork. The artwork was done by former pediatric patients at the hospital. It is one of my favorite parts of the hospital, because it always brings a smile to my face. Any time you use the washroom in the room, you see these charming images.

Friday was a rough day. The Neurosurgeon was refusing to see me and they were jerking me around. Things came to a head on Saturday morning. I think we have things resolved and I'll share the story when I have a more time. He hadn't come to see me in over two weeks and in light of this ordeal, I think it was appropriate that we have a conversation surrounding this surgery.

Here is a picture of one of the tiles from the series above. It made me laugh.

On a better note, I had the consultation with the Pulmonary specialist Ped Neuro Doc recommended. She is the Section Chief of Pediatric Pulmonary Medicine here at Big Academic Medical Center. She had been here over thirty years and is quite good. She examined Dear Son and talked to me about his lungs. Going forward, we won't need any oxygen or chest pt for Dear Son at home unless he gets to the point where he is coughing and has congestion at baseline (meaning when he's well and it's not due to surgery, like it is now). I am relieved about that. I just need to raise his bed when he's lying, sleeping or feeding and keep him on his right side until he can tolerate lying on his left side. He had some issues lying on his left side due to the fluid in his lungs. She also increased his chest pt and nebulizer treatments to every six hours, up from every four hours.

On Saturday, they did a chest x-ray which was much improved. Both lungs look a lot better. Even though it hadn't been officially read, you could see the improvement. Aside from the x-ray, I can tell by just looking at Dear Son, his breathing is better, his color is better and he wants to get out of bed. Yesterday he started crying when he wanted his diaper changed (just urine) and he's never done that before. I couldn't figure it out until I saw him turn his head to see if the nurse was coming over by him. When he fussed some more, she took her hand and stroked his head and told him she had never seen him cry. He smiled. I think he just wanted her to pay attention to him. A sure sign he's getting better!

Ped Neuro Doc has just been outstanding as usual during this hospitalization. What makes it good is that he knows Dear Son so well and really oversees all of his care. In this case, he functions as our primary doc and does the role of the pediatrician and neurology. Without him, Dear Son's medical care wouldn't be as good. Instead, when these things happen, the docs would just be treating the medical crisis at hand, versus looking at the entire patient and his history, if that makes any sense. He has the ability to step back and look at the big picture for Dear Son. He'll talk about what it means now, what we need to do moving forward and looking back, what we can learn from Dear Son to help other pediatric patients. It's no wonder, he's a favorite of the patients, their parents and the hospital staff.

On a more exciting note, Dear Son's bed is finally finished and ready to be shipped. Gary Owens, inventor and owner of Tendercare Beds, graciously offered to make Dear Son a hospital bed. I've written about it a few times before but if you haven't seen it, be sure to check it out. He makes headboards and footboards that slip on right over hospital beds so the your hospital bed looks like a regular bed. They are just beautiful. I post pictures of it once it arrives.

Thank you for all of the prayers, comments and support. It looks like Dear Son will be released tomorrow, if all goes well. Today, he is getting a 24 hour EEG. If that looks good, we can go home tomorrow. Ped Neuro Doc wanted to keep him over last weekend to give Dear Son more time to recover. Dear Son's been having some seizures, some of which are started from the chest pt. When they turn his vagus nerve stimulator after the surgery, they have to start the settings out low and then increase them slowly. We know the settings were too low, hence the seizures, but we have to go up gradually again and this takes a while. Since the battery was depleting on his old vagus nerve stimulator, they had to keep increasing the settings to compensate for the depletion. When they get the new one, they can't start it where they left off so they have to start lower and work their way back up until they get it to a point that controls most of his seizures.

Dear Son Update-Out of the ICU

2009-05-14T07:50:00.003-05:00

Dear Son was transitioned last night to a regular Peds floor. They want to see how he will do with less care. Currently, he is still on 3 liters of oxygen via a nasal canula, receives chest pt via the vibrating vest along with albuteral every three hours. What is still problematic is the chest x-ray. Monday, Dear Son had perked up and on Tuesday, they didn't feel he needed a chest x-ray. I wasn't comfortable because I hadn't see consistency in the chest x-rays and asked if they could do one. They did it and the findings (Findings are the clinical impression by the radiologist.)came back unchanged, but in viewing it, I thought it looked worse because the left lung fluid had increased and the right lung fluid was down whereas the prior day's x-ray showed similar amounts of fluid in the left and right lung. Yesterday they did a chest x-ray (without my prompting, lol!) and the findings on the chest x-ray were worse than the previous chest x-ray. The left lung showed increased collapse and fluid and the right lung still was a bit worse as well. I typically ask to see the chest x-rays every day and I always read the impressions and the findings as well as listen to what the Attending Doc tells me. I would like to see some stability in them with the chest x-rays being the same or better on a daily basis and they agree. Also, while he seemed himself on Monday, he was more subdued on Tuesday. He did have his eyes open but was very quiet. Yesterday, he slept virtually the entire day and opened his eyes only a few times. I would have preferred to see him more alert and active on Tuesday and Wednesday however his behavior seemed to mimic the trend of the chest x-rays. They were concerned as well which they verbalized to me which is why they kept him in the ICU a bit longer. They still were unsure up to last night as to whether he could manage with less nursing care on a regular peds floor and were debating a "step down" (A step down floor is a step down from the intense nursing care of the ICU but more care than a general pediatric floor.). Going forward, they are content to do chest x-rays as needed. They also feel sitting him up would help with the fluid. Since I can't lift him into a chair, Dad came down to lift him into the chair. The hospital has difficulty locating their hoyer lift and while they do have a four man "lift team", the last time I tried to use them to lift Dear Son into his wheelchair for discharge, they couldn't locate the team and only one guy showed up. Some time later a second guy showed up and they said they couldn't lift him and asked me for help. Still unbelievable that in 2009, a level one trauma center for peds, that cares for medically complex children like Dear son, doesn't have hoyer lifts on every floor or even the ability to locate one.

On a better note, the central line has been removed and he has completed his course of Zosyn (Last week, he was on Vancomycin as well but that was discontinued).

Today, we have our follow up appointment with the Neurosurgeon that was scheduled at the time of the operation. He never came to see me after the surgery or while I was there which would have been nice. I think in light of the situation, a little face time with me would have gone a long way. He did show up briefly last week, when Dad was there, and stated it wasn't as bad as he was told, which probably wasn't the best statement to make in light of Dear Son's fragile condition. The fact that he remained in ICU for ten days and the endless discussions over the intubation and whether or not they could extubate, along with everything else, including the recommendation for pallative care, would be very hard to make a case that he wasn't "that bad". On the flip side, showing up and having a conversation with me over the surgery, would have gone a long way. I don't expect things to be perfect, but I do think in this situation, that while a neurosurgeon may not have been able to predict the mucous plug and lung collapse, I do think he could have made a better decision regarding the general anesthesia versus the heavy sedation which prompted the lung collapse.

Next steps are to get an extended EEG, seizure labs, see if he can manage with less care on a regular peds floor and to meet with the pulmonary specialist to see what is needed so we can go home. Ped Neuro Doc mentioned the possibility of being released on Sunday but I'll have a better idea when he gets back in town tomorrow. Dear Son will probably get a Nissen done in about two months or so, or whenever he had recovered.

Thank you again for the good comments and information on the last post and for your continued prayers and support.

Dear Son ICU Update IV- Much Improved!

2009-05-12T18:23:00.003-05:00

I managed to get home today to post an update. When I was home on Sunday, I turned my furnace on and got nothing but cold air. I called the leasing office of my apartment complex the next day and they came out to fix my furnace. The heat exchanger broke and they needed to replace it. In the meantime, they broke the gas line. A few jumbled messages from the leasing office staff had me worried. Today I got a call from the leasing office saying there was a problem in my master bedroom closet. They said a sprinkler went off in the hallway and water seeped into my closet. They said they had the carpets cleaned and had giant fans in my apartment. I envisioned all of my beautiful floral prints and some decorative mirrors that I store there as damaged. I rushed home to find that wasn't the case.

Instead, I walked into my apartment and the patio door and bedroom window are wide open with these giant turbo fans blowing. The fans are so loud I can't even talk on the phone. All of my furniture has been re-arranged and pretty much, anyone can walk right in the apartment. The maintenance man came and explained that the sprinkler had gone off in the outside closet (where my furnace is located) when they were working there and they had to call the fire department. The water ran down all the walls and into my apartment dining room and into Dear Son's room. They had giant fans running and all of my furniture moved around. They brought in another vendor who will cut out the wet drywall and replace it tomorrow. Once the carpet is dry, they will clean them for me. Yikes!

As for Dear Son, I think we have finally turned the corner. His chest x-ray today was much improved. The chest pt (and albuterol) every three hours seems to be working along with turning him over every two hours. He is still on 4 liters of oxygen but he is on a nasal cannula. They discontinued the Lasix today, which he was on to help pull all of the fluid out of his system. He still has a central line and they are feeding him very slowly, around 40 ccs an hour, which is roughly a half of a cup or so, if I recall.

The Pediatric Intensive Care Attending (PICU) Doc met with me alone today and recommended pallative care. They have a program for kids that is funded through a grant where they provide care and support for weak or "vulnerable" children and she thinks that Dear Son could benefit from that. It's different from your traditional hospice where the patient is only given six months to live. I also reviewed my notes from Dear Son's medical history and informed her that not only did Dear Son have two MRSA pneumonias in 2006, but he had a right lung pneumonia in 2007, 2008 and a right lung collapse in 2009. My concern was how I could deliver the best home care after this hospitalization and what future admissions would look like with these concerns. We will be meeting with a pulmonary specialist to see what else we can do.

She also discussed having a plan in place for the future. I had been worried about a trach however she explained that a trach is only put in kids when they have airway issues or when someone is vented. In Dear Son's case, should he get another pneumonia, there may come a time when we have to decide if they can do a trach and send him home on a ventilator or if

we will refuse that. An ugly decision for sure.

Our greatest challenge now is still feeding, since they are concered about reflux. They need to insure that Dear Son does not aspirate his own saliva nor his food. I asked Ped Neuro Doc if Dear Son needed a Nissen. When he had his g-tube put in many years ago, it was strictly for meds and not used for feeding. As a result, they chose not to do a Nissen. It was less invasive to omit it and it really wasn't needed. It was a good decision at that time and for many years. Now that Dear Son has these issues, they think they want to have him in for surgery to do a Nissen. They would have to wait eight weeks or so or whenever he fully recovers from this hospitalization.

We are still in the ICU and I expect we will be transitioned shortly, maybe even tomorrow, to a regular floor. They are proceeding cautiously and want to see how he does without the intense care of the ICU. Currently, they do chest pt on Dear Son every three hours where they hook up a vibrating pressure vest to break up the fluid in his chest.

I am going back to the hospital now. Thank you all for your continued prayers and support for Dear Son and his mother. I know all of your prayers and good wishes, along with our medical care, has helped Dear Son turn the corner.

Dear Son ICU Update III

2009-05-10T22:31:00.010-05:00

Things have gotten progressively worse over the past few days. As you may recall, Dear Son had surgery on Monday to replace his Vagus Nerve Stimulator with a new model, since the battery ran low. For the surgery, they gave him heavy sedation and Dear Son was unable to process his own secretions (saliva). As a result, he developed a mucous plug in the brochial tubes and his right lung collapsed. Dear Son was admitted to the ICU, placed on a non-rebreather, with 15 liters of oxygen. He was given Vancomycin and Zosyn to help fight the infection.

This photo shows the in re-breather (not sure of the spelling). This allows for a high concentration of oxygen to be delivered to the patient.

On Friday, the chest x-ray was worse, showing there was more fluid in both lungs. Most of what has been problematic for me, is trying to understand exactly what is happening. They cultured the lungs and found out it wasn't a MRSA pneumonia. Since it wasn't a MRSA pneumonia, they discontinued the Vancomycin. Some of the data seems pretty good at times however the chest x-ray doesn't seem to follow. They can not seem to stabalize Dear Son. They have conversations almost daily with regards to intubation with the dilemma being that the ICU Attending Doc feels if he is intubated, he won't be extubated with Ped Neuro Doc disagreeing-he does think he can be extubated. The ICU Attending has been very clear that she does not believe he can be extubated and she said that she does this every day. On the flip side, Ped Neuro Doc knows Dear Son best, he has followed him since he was ten weeks old. His judgement is excellent and he has always been right on where Dear Son is concerned. I also wanted clarity with regards to what exactly was causing his issues; They explained that it was the collapsed right lung along with the infection that was made worse by the fact that he is non-ambulatory.

I also needed some clarity with regards to the oxygen. They are using this in re-breather and in the past they had used the Bi-Pap and C-Pap machines. They explained how the Bi-Pap and C-Pap machines work, pumping oxygen into the lungs and the problem is that Dear Son is so weak that if he were to cough, trying to clear out some fluid, the force of the machines would push back causing him to aspirate into his lungs.

Another issue is that of platelets. His platelets are low and he has had issues with recurring fevers all week. Once the fever goes away, a few hours later, he has a low grade fever and then it rises. We repeat this exercise daily.

Friday night, Dear Son struggled all evening and throughout the night. I contacted the nurse in the middle of the night and asked him to call the doc because Dear Son was working so hard to breathe. His respirations were 40-44 breaths a minute. The doc took a look and said he was fine. I told the nurse that the doc was wrong and that Dear Son was in distress. I usually am not this bold however I do know when Dear Son is in distress and what is normal for him. I don't profess to know the meaning of all of the data however I do know what I see.

On Saturday morning the chest x-ray arrived and was worse. It wasn't only worse, it was horrible. The ICU Attending wanted to do deep suctioning of Dear Son's lungs and I disagreed because they did this while he was on his back and I was certain if they did this, he would aspirate more by choking on his own vomit. In the end, they attempted it and he vomited twice on his back and they suctioned it out. They stopped doing it after that and just used the pressure vest. Ped Neuro Doc came by and said the chest x-ray was, "absolutely horrible". He was extremely concerned. Later that night, I saw the chest x-ray and was flabbergasted. The entire left lung was filled with fluid and 75% of the right lung. The x-ray findings read that there was, "a complete opacifaction of the left lung and a partial opacifcation of the right upper and lower lobes, worse than the previous study". The impression was that it was a worsening of the lungs most likely due to "increased retained secretions".

By Saturday evening, I was feeling pretty down. I had contacted everyone all week and asked them to pray for my Dear Son. He was on many prayer lists. I worried about Mother's Day because it was on Mother's Day of 2006 that he nearly died of the MRSA pneumonia. They did a blood transfusion that day and some three weeks later he recoved. I love my son so much and the last thing I ever want is to have Mother's Day be the anniversary of his death.

On Saturday, they increased the chest pt to every two hours along with changing his positioning. By this time, his eyes were swollen shut, he had been unconscious since Tuesday and unresponsive since his surgery on Monday. His left foot was swelling and they weren't certain why. They increased the Lasix to get rid of the fluid which was somewhat problematic since he wears a Scopolamine patch to dry up his secretions. The patch dries up all secretions and doesn't allow a person to sweat and Lasix does the opposite-it pulls the fluid from the body. I felt bad for Dear Son.

Today, the x-ray was a lot better. Both lungs showed improvement with some clarity on the top of each lung meaning some fluid had subsided. The problem though is that now they feel that he has chronic aspiration meaning he aspirates all the time on a daily basis and occurs when he is lying down. Dear Son can't sit up much anymore so this is a huge issue. In additon, they have recommended we see a pulmonary specialist after the hospitalization is complete to see what equipment I will need in the home to care for Dear Son.

Perhaps the saddest part is that this will always be a recurring issue for Dear Son. As he gets weaker, he will probably get to the point at any time where he needs a trach. I don't think I can do this as I have a very weak stomach and I think it would break his spirit. I asked them if it would be appropriate for Dear Son to have this, considering he has a progressive neurological disease. I asked if he could still get an aspiration pneumonia and the answer is yes, so I am not certain what issues this would resolve. That being said, I don't know how I could really make that decision to not do the trach. I have been pretty firm in my resolve that it was not something I could honestly do however the bigger issue is that I probably could never really agree to do it, if the decision had to be made.

But perhaps the best thing that happened today was when Dear Son said, "hi" to me three times. He was lying in bed and had not come to all week. Out of the blue, as I was sitting in the chair, I heard him softly say, "hi". Not once, but three times! That Dear Son may not know it's Mother's Day but he always delivers. It was the absolute best thing I would hear all day. Dear Son seemed to be breathing easier when I left today. I only hope it continues. In the meantime, I really want to bring him home.

Thank you so much for your continued support and prayers for my beautiful Dear Son. Please continue to pray that he gets well.

5/11/09 Update 8 a.m.- It appears our joy is short-lived. Today's x-ray was worse. I will try and post any updates today after work before I go back to the hospital; I won't have any internet access once I am there. Due to Dear Son's MRSA (once MRSA, always MRSA per Big Academic Medical Center), he is on "contact isolation" which means they won't allow me to use any hospital pcs or anything else down there, even though I don't have MRSA.

*The two photos with the black tubing are of Dear Son using the pressure vest. The pressure vest is hooked up to a machine and vibrates the vest. The vibration helps break up the fluid inside the lungs. That fluid, is then cleared from the lung when the patient coughs. They are using this machine on Dear Son every two hours and for thirty minutes each session.

Dear Son ICU Update II

2009-05-07T20:47:00.005-05:00

Dear Son struggled a bit in the ICU last night. As you may recall, Dear Son had surgery on Monday to replace his Vagus Nerve Stimulator with a new model, since the battery ran low. For the surgery, they gave him heavy sedation and Dear Son was unable to process his own secretions (saliva). As a result, he developed a mucous plug in the brochial tubes and his right lung collapsed. Dear Son was admitted to the ICU, placed on an non-rebreather, with 15 liters of oxygen. He was given Vancomycin and Zosyn to help fight the infection.

Last night, Dear Son struggled on his right side. He was breathing so hard that the nurse and I turned him on his left side, which is the site of the surgical incision. He was breathing easier however as a result of lying on that side, his left lung filled up with fluid. To reduce the fluid, they started him on lasix and are also giving him magnesium sulfate and potassium phosphate. They increased the Vancomycin since it wasn't at a therapeutic level. Blood gases, which monitor how hard Dear Son is working are still o.k. and are taken every two hours. He continues to get respiratory therapy every three hours that includes both percussor and albuterol. The albuterol helps the brochial spasm but makes Dear Son work harder since he does not get all of the oxygen he gets when he is on the inre-breather. The anesthesia can deplete the seizure medications so they are taking blood levels of those daily.

I spoke with Dear Son's Ped Neuro Doc to get a better understanding of the situation. He states that Dear Son has a substantial infection and will be there quite a while, at least two weeks. He is concerned that he's not stabalizing and that he may still need to be vented. He does not expect him to regain consciousness for a while.

The Attending Doc spoke with me tonight as well. She respectfully disagrees with Ped Neuro Doc and feels that if Dear Son is intubated, that he can never be extubated. She explained that she does this every day and since he may not be able to be extubated, she is doing everything she can to avoid it. She would prefer it if he wasn't working so hard to breathe but she is watching the blood gases. She also stated that last night, when Dear Son was working so hard, his heart rate was 175-180 and that today it was much better so we have reason to be pleased that while things aren't getting better, they could be getting a lot worse.

In addition, I explained to her that I had been worried that if Dear Son was working so hard and then was intubated that he might not make it. They stated that they are watching the blood gases so they will know asap if he is struggling. One frustration for me, throughout this hospitalization is that sometimes the numbers/data look better than what I see in terms of Dear Son. I know when he's working hard and it takes an awful lot of work for Dear Son to get through his day when he is well. For example, he goes to school, comes home and goes to bed after school then sleeps until the following morning. That takes all of his energy. So you can imagine that when he's not 100%, it would really take even more of his energy.

Finally, I had some conversations with Ped Neuro Doc regarding the surgery itself and the process for sedation. He agreed that they need to have a more formal conversation with Neurosurgery surrounding sedation for children like Dear Son as well as the discharge process for the outpatient surgeries. Perhaps with children like him, they may need to stay an additional 24-72 hours to be monitored.

Overall, I am quite cautious at this point. I am relieved that I have someone like Ped Neuro Doc who knows Dear Son so well (he's treated him for 17 years) involved in the decision making. I also know that if anyone can save Dear Son, it's Big Academic Center's ICU. As for Neurosurgery, the Neurosurgeon implanted Dear Son's device in 2004 under worse conditions and Dear Son recovered. While perhaps a different outcome may have occurred with the use of a breathing tube and general anesthesia or perhaps simply by additional monitoring for 24-72 hours, I do feel that he did try to make the best decision for Dear Son on that day. I recall discussion that morning of whether or not to use a breathing tube. (The majority of the time, they do not use that for vagal nerve stimulator replacement surgeries.) Dear Son is a complex case and it's important to remember that when he made this decision, he made it in his best interest. I don't think anyone expected that this would have happened and I think it's much easier to look back and think that a different decision could have been made when in reality, it would be pretty hard to forsee this type of situation. That's just my take as a mother. I guess what I am trying to say is that while it's certainly unfortunate that Dear Son is in this predicament, I do believe the Neurosurgeon was acting on Dear Son's best interests.

Thank you for all of your comments, thoughts and prayers. I appreciated your continued support. I will try and keep you posted as much as possible. I am home tonight since Dad is staying overnight however I will be there the next few days.

Dear Son in Pediatric Intensive Care

2009-05-06T14:42:00.004-05:00

Monday's surgery to replace Dear Son's Vagus Nerve Stimulator went fairly well. The surgery was scheduled for 10:30 a.m. however it did not start until after 1 p.m. Since we don't have a wheelchair van, I have his Dad come along to lift Dear Son into his SUV for transport. Since the incision was under his left arm, he would tear the incision if he did this. I spent the morning of the surgery on the phone with the insurance companies trying to get approval for an ambulance ride home. I contacted Blue Cross Blue Shield, the primary insurance company and explained that it was medically necessary. The benefit plan stated however they would only pay for an ambulance if it was an emergency so they denied it. I was able to get prior approval from the secondary for an ambulance to transport him home. At 3 p.m. he came out of surgery. They explained that he was heavily sedated but that he did well.

Around 5 p.m. or so, they called the ambulance to take him home. Dear Son started choking a bit as if he were going to throw up. They gave him Zofran however some time later, I noticed what appeared to be blood all over his arm, at least from the angle I was sitting at. When I inquired about it, they checked and said it wasn't blood but he had an allergic reaction to the Zofran that turned his skin bright red. Anesthesia was called and the doctor gave him Benadryl for it. I took Dear Son home and things seemed to be going well. To make sure he was o.k. I layed down on the bed across from him when I got home to listen to him breathe. All appeared to be going well. He slept through the night on Monday and all of Tuesday. He never stirred and never woke up.

On Tuesday afternoon, I began to get a little concerned because he hadn't woke up at all. They did explain that he was heavily sedated before I left the hospital, but around 3:30 in the afternoon his breathing became somewhat different and labored. By 6:30 that night, his breathing had deteriorated and he was breathing what seemed to be one breath a second. I don't know how else to describe it, but I know when Dear Son is in trouble. I take his temperature and it's 101.7 however his arms are freezing while his head is hot. Not good. I paged Ped Neuro Doc. He recommended I take Dear Son to Big Academic Medical Center right away. Since I can't transport him on my own, I had to call 911 to get an ambulance to take him to Local Hospital and then Ped Neuro Doc sends transport to Local Hospital for pick up. We agreed on the plan and he began getting the admission to Big Academic Medical Center.

Paramedics arrive and I explain that he'll need oxygen; I give them his history, tell him about his surgery and about the fever. The paramedics take his oxygen saturation and it's 77% with his respiration at 30-33 breaths a minute. They begin oxygen and transport him to Local Hospital. Local Hospital works on him a while and attempts to get an IV in but can't. They have six nurses attempting it and finally use a "quickie ultrasound" machine to locate a vein. Around 9 p.m. the air transport team from Big Academic Medical Center (BAMC) arrives. They explain they need to work fast since they want to get him to BAMC before they need to put a breathing tube in him. I am worried.

Prior to leaving, they ask me to sign a consent form to transport him via the helicopter. Dear Son has been transported five times like this however this consent form is different. Written on the consent form is the fact that I am signing off that I am aware of, "crash and/or death". They've never done that before. I wonder how bad off he really is. As they get ready to leave the room, they turn and ask me if I want to give him a kiss. Things like this make you worry he might die. I kiss Dear Son and they ask me for my cell phone number so they can call me and tell me where to meet him. (I am going home to grab my overnight bag and meet them at the hospital. They have everything they need to treat him. I have an emergency information sheet with diagnosis, meds, contact names, the works.) They said it might be the ER or the Peds Intensive Care Unit (PICU). Usually, this isn't a major concern, since I drive to BAMC and then they just tell me where he's at, not a big deal. So the fact that she is calling me personally, is really worrying me.

They call me on the way down and he's in the PICU. When I get there, they are working on him. I wait for them to vent him however they don't. They've taken a chest x-ray and suspect a right lung pneumonia or an infection from the surgical wound. His wound seemed fine Tueday morning but by afternoon it had started to bruise. He's working awfully hard and I really don't like it. They work on him all night, trying breathing treatments but nothing seems to work. They state the numbers on the monitor aren't bad but what is odd to me is that his physical condition is deteriorating. He is working far too hard and as far as I am concerned, we need to do something. I tell them repeatedly throughout the night that he's working too hard. Interestingly enough, Big Academic Medical Center would tell me later that Local Hospital told them Dear Son was septic and going to die. I am not convinced Local Hospital knows what they are doing. Despite the numbers on the monitor, doctors repeatedly show up throughout the night and finally, around 4 a.m., neurosurgery stops by to check out the incision. They think it's pretty good but everyone is still pretty concerned.

By morning, the Attending Doc comes in and states that Dear Son is still working far too hard. I agree with her. They do a chest ultrasound and she states that they will attempt to run a pigtail catheter into the lung (actually the air space next to the lung) to try and drain the fluid. The lung has partially collapsed and from the looks of the x-ray there is fluid. They attempt that but don't find any fluid. They then put a central line into his groin since the IV's keep blowing. He had an arterial line but in when he came in and that was still o.k. If that doesn't work, they will need to intubate him however the problem is that if they intubate him, they will not be able to extubate him. She asks me how I feel about that and I tell her that I know from the way he is breathing that we need to help him or he'll tire out. I can't worry about not being able to extubate him without doing what we need to do to help him.

On the inside, I feel terrible. I hope Dear Son is strong enough to come through this but I am beginning to wonder. Things don't appear to be going very well. Dear Son has never come to nor opened his eyes since Monday and the prospect of him being on a ventilator forever is humbling.

Ped Neuro Doc comes in to speak with me and says he has reviewed the x-ray with Dr. Y, the radiologist. Apparently, the brochial airway on the right is blocked with a mucus plug and that caused the lung to collapse. The lung collapse is what they saw on the x-ray (meaning it wasn't fluid). They suspect that the sedation from the surgery inhibited Dear Son's ability to move or cough thereby inhibiting his ability to swallow and process his own secretions. As a result, he aspirated his own secretions and developed a mucous plug. (Remember he wears a Scopolamine patch normally to dry up his secretions since he can't process them normally.) This makes sense to me since Dear Son didn't move or stir at all on Monday night or Tuesday.

The Peds team however thinks that chest PT (where they pound on the chest and back) may break up the mucous plug, which will get air into the lung and help him breathe easier. Ped Neuro Doc doesn't think it will work and even if it does, he thinks Dear Son is breathing far too hard and needs assistance. He recommends he be vented but does tell me that he thinks he can be extubated. I am relieved. He knows Dear Son best and has cared for him since he's been ten weeks old. He also functions as Dear Son's primary care doc. He does an outstanding job. I am relieved in some respects that we all agree that Dear Son is working far too hard.

Peds does 40 minutes of chest PT and manages to break up the mucous plug and get air in there. The x-ray looks better and they think he is breathing easier. They show me the x-rays and I have to agree. I still am not comfortable when I look at him and see him breathing so hard but they try to convince me that he is breathing easier. I think it made a slight difference but I still think he's breathing hard enough that I worry it's going to exhaust him. He's been breathing hard since 6:30 Tuesday night and he still isn't much better. He still is not awake.

Overall, I am very concerned. Dear Son had a relatively simple surgery to replace his Vagus Nerve Stimulator and yet he wasn't able to manage it. I still don't believe we are out of the woods but I certainly feel better than I did this morning when they said that he'd never be extubated. After all, this is the PICU at a Level One Trauma Center. They do this every day. If anyone knows, they know.

As for now, I have just left the hospital to come home for a few minutes while Dear Son's Dad is staying there. I'll keep you posted when I get a chance. I don't have pc access there due to contact precautions (Dear Son previously had two MRSA pneumonias there.) Dear Son is on two antibiotics: Vancomycin and Pipercillin. They are checking his blood gases every two hours to see if they will improve. They are moving him over from side to side every two hours so he doesn't have any more lung issues on either side. This is hard for Dear Son since his left side is still bruised and sore from the surgery. I am sure that isn't too comfortable to lie on that side. They continue to treat his fevers. They will continue chest pt in order to avoid intubating him. They expect that we will be there for a few days.

Please pray for Dear Son. I will update you when I can.

Surgical Preparation for Special Needs Children: A Parent's Perspective

2009-05-03T09:22:00.004-05:00

We started the day like we normally do. Dear Son had completed his feeding via the tube and I was getting ready to get him dressed for school. I leaned over his bed and gave him a big hug. I take his left arm and put it around my neck. I tell him he needs to give his mother a hug and I proceed to hug him and kiss him on his neck. Some days, his arm is tight and when I put it around my neck, he nearly chokes me. That’s the way it had always been but this year, he’s been making such nice progress at school using his arms, that some days, when I put it there, he will not choke me and instead has more control. On this day, I ask him for a kiss however at seventeen, he does not want to do it. While I kiss his neck, I love to watch his face, his eyes are sparkling and he is laughing. His face is full of joy as he teases me. I know he loves his mother but he’s just having a little fun. That is who he is…a very sweet young man. After the hug, I proceed to get him dressed for school.

Some time later that evening, at he was lying in bed getting his dinner fed through the g tube, he began to have a seizure. The seizure was small at first but began to gain in intensity. It started with some small hand shaking and some agitation but soon began to build. I took the magnet off of his wrist and put it over the vagus nerve stimulator which is implanted under his left armpit. Holding it there for three seconds will send a charge up to the vagus nerve and stop the seizure. This particular evening, it did not work. The seizure was not stopped and began to grow. As it did that, I became more concerned, doing whatever I could to stop it. I used the device again and again and finally, the seizure subsided. Dear Son came to a bit. I was standing there asking him if he was doing o.k. and telling him that things were going to be o.k. One of my hands was on his arm and the other on his bed when he leaned forward, and kissed my hand. Being special needs, he kisses differently at times, for him, a kiss is a lick. It’s always been his way of thanking me for helping him or for talking to him about something that has bothered him. I thanked him for the kiss and thought back to the morning where he was teasing me and not giving me a kiss and then that evening, when he was in trouble, kissing me right away. That is the beauty of these children. They live every day from the heart. Some times you get what you earn and other times you don’t but when you do, it means a lot.

We have a saying Dear Son and I, that I coined some time ago. It is, “where you go, I go”. It means that wherever he goes, I will be there to pave the way, to protect him. That nothing will ever happen to him without me questioning things and being his voice. Because he is non-verbal, I need to stand up for him and to protect him. He can not tell someone when something is hurting him but I will go to bat for him to make sure that a particular test is necessary for him or to see if there isn’t another way to do the test that would be less invasive or more comfortable for him while still allowing medical personnel to do their jobs. And this week has been no different.

Early last week, I received a phone call that Dear Son had a surgery date to have his vagus nerve stimulator (VNS) implanted. I had contacted the secondary insurance a few days prior to get approval and they could not give approval without a surgery date and Big Academic Medical Center would not give a surgery date with prior approval from the insurance company. I had them speak with each other to get this resolved and they had called me with a date. As I mentioned previously, the diagnostics had come back on the device and it showed that his battery was wearing down making the device less effective, hence the seizures. Initially they were going to replace the battery however more often than not, they typically will upgrade the device with a new model. The newer model is reportedly more sensitive and should allow for easier activation with the magnet.

Prior to a surgery, I typically have a lot of questions. My main concerns are making certain that Dear Son is taken care of and that we avoid any problems. Big Academic Center wants the same thing however sometimes a “one size fits all” approach doesn’t work well. For this surgery, the instructions I have is that he should receive nothing to eat or drink after midnight, and that he can take his seizure medications with a little bit of water. I need more information that that. Due to the large amount of medication he receives, I will see if I can give him 60 cc of formula with them so his stomach won't be irritated.

My other concern has to do with him choking on his saliva. Dear Son has severe swallowing issues related to the progressive neurological disease. If he were to lie on his back, he will choke to death on his saliva. Currently, he must be on his side at all times when he is lying down. Dear Son can not roll himself over so if he were to get in a situation where he is choking, he can’t help himself. Even if you tell the docs that, people sometimes forget. In addition, he wears a Scopolamine patch to control his secretions. When I ask them if this will be a problem for surgery, for him to wear his patch, they inform me that they will use a different drug for this, called Robinal. Robinal did not work for Dear Son so I explain that this isn’t a good option. After some discussion, they agree to let him wear the patch for surgery.

When I speak with the nurse practitioner about his seizure medications, she informs me that they can give several of the seizure medications via IV. Our surgery is at 10:30 a.m. and we are instructed to be there at 8:30-9 a.m. I tell her that he normally receives his medications at 6:30 a.m. and if he gets them that late, he could have seizures. She ends up calling the anesthesia doctor and gets approval for me to give his six seizure medications with 60 ccs of formula at 4:30 a.m. This will help prevent any seizure issues during surgery and also help avoid a reflux issue from the irritation of giving meds on an empty stomach.

Finally, I ask questions about the programming of the device. Earlier this year, when Dear Son was hospitalized, we had a new person (to me) program the device and the following day when he was going to be discharged, I was told someone would come to check the device to make certain the settings were accurate and no one showed. As a result of this issue, I wanted to make sure that I understood what would happen after the surgery. I wanted to know if they ramped up the device or started them at the previous setting. The nurse practitioner seemed peeved that I would question her and told me she did this everyday and that she could understand that I was “anxious” about the surgery. I explained to her that I wasn’t anxious but that I needed to understand what was done since sometimes people at Big Academic Medical Center don’t always communicate very well with each other. My concern with the vagus nerve stimulator was that if the settings were set too high, that he would be shocked and it would be painful. Some of the patient notes that I read on the internet had described the shocks as more powerful and painful with the new device; since Dear Son is non-verbal, I wanted to know how to avoid that. She explained that for non-verbal kids, when they cough a lot (coughing is a side effect of the VNS), she knows the setting is too high. Finally, I asked about the incision and school. I needed to know when he could return and she informed me that typically the neurosurgeon doesn’t want the kids to go back to school until he has seen them in follow up a week later. So essentially, Dear Son will be out of school a minimum of one week. This would have been good information to have a little bit earlier since being self-employed and working part-time, I need all of my income to keep a roof over my head.

In the end, I am pleased that they were able to schedule him so quickly. The neurosurgeon is the same one that implanted the device in 2004 and the surgery went well. Not only is he a great pediatric neurosurgeon but he has an amazing bedside manner and is perhaps the nicest man you will ever meet. The Nurse Practitioner does a great job too. She was the one that I spoke with in 2006 who helped me arrange for a transfer to Big Academic Medical Center when Local Hospital failed to diagnose and treat a MRSA pneumonia and he nearly died. Her ability to contact a doctor on a Friday night and help me arrange for a transfer saved his life.

That being said, there are things that could be done different by hospitals to make surgeries easier. Our case above is a little unusual in that normally you have an anesthesiology consult in person prior to a surgery where many of these issues would have been addressed. Due to the speed of this date, this was done over the phone. One thing that would have been helpful was knowing that he couldn’t return to school for a week or more. I am self-employed and work part time while taking care of Dear Son. It’s not always easy to cancel jobs at the last minute and lose revenue when these situations arise. Even knowing these things a few days ahead would have been good.

Last night, I began to think about getting Dear Son home from the hospital. Typically, his Dad lifts him into his SUV to take him home since I don’t have a wheelchair van. With the incision under his left arm, he won’t be able to lift him without tearing the incision open. We can’t lift him another way since it would still require grabbing him under the arm. So last night, I went on-line to see about renting a wheelchair van to get him home. The place I found, requires a three week advance notice to rent a wheelchair van.

If we can do this, I will take his hoyer lift sling to the hospital and hope that they can find a hoyer lift for us to use to get him into the wheelchair. You would think that Big Academic Medical Center would have this type of equipment there however that has not been my experience. The last time he was hospitalized and I asked for help lifting him in the wheelchair, they brought in a “lift team”. This was a new concept to help patients and they identified four individuals as the “lift team” who would lift the patient. Well, they could only find one that day and finally rounded up another person. Both men weighed around 120 pounds each and when they saw that Dear Son was seventeen and weighed 170 pounds, they said they couldn’t do it. I couldn’t believe they couldn’t locate a hoyer lift at a Top 100 Pediatric Hospital.

In summary, my advice to other parents when their child has a surgery is the following:

- Ask questions so you understand the entire process.
- Don’t be intimidated by medical professionals. It’s your child and asking questions to better understand the process is fine.
- Make sure the surgical procedures help guarantee the best outcome and maximum comfort for your child.
- For outpatient procedures, get clarity on how long your child will be out of school and what the activity level is appropriate.
- Make certain to get a prescription so they can return to school.

For hospitals, I’d recommend the following:

- Review your procedures to guarantee the best outcomes. If patients are coming in for vagus nerve stimulators, which are only implanted for patients with uncontrolled seizures, having a policy that states only water can be given with meds may not make sense. For these patients, who probably are on multiple seizure medications and who more than likely have reflux issues, you may want to review the policy.
-For all outpatient procedures, be clear on what the patient can and can not do after surgery. If they need to be off of school for a certain period of time, notify the parents early. Add a line to the surgical instructions you mail out that says, “Patient most likely can not return to school for x days.” You can modify it after surgery but since most people need to work, they need to know in advance.
-Think beyond the surgery with regards to what instructions would be helpful and check the box on the surgical instructions. For example, something simple like, “For non ambulatory patients, a hoyer lift must be used for lifting until incision is healed.” Some wording like that, would help give me a heads up with regards to transportation. Also, for patients like us, without a wheelchair van, do you have other transportation alternatives available to get the patient home? And where would I find that information? Could that information be included on the sheet?

I am relieved that Dear Son will have his surgery tomorrow and I realize that swapping out the device is not a big deal compared to other surgeries however without proper planning, the potential for a bad outsome is increased. Had I not discussed the saliva issues or medication issues, Dear Son could have choked on his saliva through use of the wrong medication or vomited his seizure medications. Either one of these scenarios could have had a fatal outcome on a relatively simple surgery. I expect things will go well tomorrow and look forward to better seizure control with his new device. And tomorrow, I’ll be right by his side, after all, we have that saying…"where you go, I go”. Hopefully, I’ll have made is easier for him.

Lovely Afternoon Tea~Tablescape Thursday

2009-04-29T14:51:00.002-05:00

Some days, you need to take a few minutes, pour yourself a cup of tea and let the sun shine in. For an "Afternoon Tea", I am going to use one of my favorite teapots. I started collecting teapots in 2006 after going to a teapot show in Chicago. I was so enamored with them, that I thought I would start a collection. After all, every good home needs a collection of something.

This teapot is very special to me. I found it in the gift shop at Big Academic Medical Center in 2006. My Dear Son was hospitalized and on a ventilator with a MRSA pneumonia and nearly died. He was hospitalized for over three weeks and vented most of the time. He came home for a week and was re-admitted but I'll never forget it. I was very fortunate to have some wonderful people who saved my Dear Son's life and allowed me to see him grow up.

I always stay with my Dear Son when he is in the hospital or when he goes anywhere. He is on multiple medications several times a day and requires total care. When he was on the mend, I went into the gift shop and saw this lovely teapot. I purchased the teapot, cup, saucer and biscuit holder.

Here is a closer picture.

I decided to use this ornate mirror, that normally hangs in my foyer, as a beautiful tray. The detailing is not only feminine but pretty. The mirror reflects all of the light coming in through the window. Using the mirror as a tray is a great way to add a little drama to an ordinary day. It's also a wonderful way to make things more special, if you are having a guest over.

Another view of the tray and the linen monogrammed napkin.

Here is a close up of the tray.

The faux bearskin rug adds some luxury to the tablescape. You can see the biscuit holder next to the tray. Does anyone really store biscuits in there? I store my iPod accessories in there for my workouts.

I love the way the light filters in on the crystal lamp. I originally saw a crystal lamp in a magazine and cut out the page and put it in my home file. The one I saw was an antiqued brass and fluted crystal floor lamp with a solid crystal base; it was made by Decorative Crafts. When my sister died, I found this lamp in her apartment, hidden away. It was nearly identical to the one I had saved in my home file. The only difference was that it had a long, tall shade and the base was giltwood, not crystal. I have since replaced the shade and at some point will probably have a custom silk shade made for it. What a nice find and a nice memory of my sister. Also, if you look closely, you'll see some black and white fur behind the floor lamp~that's my cat lying in the sunshine.

A larger view of my living room.

In this last photo, you can see the botanical print on the wall; it is one of a pair. I purchased the teapot because it matched my prints. My two favorite things in the world are flowers and children. Nearly every print in my home is of flowers, with one exception, the print over my bed. I started collecting botanical prints many years ago for my birthday.

I hope you have enjoyed my "Afternoon Tea" tablescape. Perhaps you can join me next time. In the meantime, be sure to check out other lovely tablescapes here at Susan's blog, "Between Naps on the Porch".

Note: I work part time as a Home Stager and Professional Organizer. I run a business called, "Dream Organizers"; my motto is, "Keep it simple. Get organized. Make it beautiful".

Metamorphosis Monday-Before and After

2009-04-27T09:33:00.005-05:00

This will be my first entry in the Metamorphis Monday, hosted by Susan at, "Between Naps on the Porch". As you may or may not be aware, I am a Home Stager and Professional Organizer and run my own business. While regular readers of my blog have seen this makeover, I decided to rerun this when I saw Nate Berkus on Oprah today showing his makeovers for under $500. This is a "no cost" staging makeover I did last year for a client. Total cost was: $0! I did this room and some others in four hours. I used things that the client had purchased and had sitting around her home. I believe everyone has things they can use, they just need to see the things they own in a different way.

Here are some "before" pictures:

And now the "after" pictures!

I originally posted this last year when I did it and you can read the full story, "here". Hope you enjoyed this!

Medical Update

2009-04-24T17:34:00.003-05:00

Dear Son had another seizure today before school. The seizure kept escalating and normally, I'll use the magnet on his wrist to activate his Vagus Nerve Stimulator* and that action will send a charge through the VNS typically stopping the seizure. Well, that didn't work today. The seizure started in his bedroom as I was getting him dressed for school. The seizure continued in the wheelchair, and then as we waited for the school bus. I thought at different times, it was lessening however I couldn't get the seizure stopped. We were waiting outside for the bus and when it started getting pretty bad, I went inside to grab my phone in case I needed to call 911. The nurse who rides his bus was there so I had her come inside and help me get him into his bed so I could give him some Diastat (a type of rectal valium used in emergencies to stop seizures).

As we got inside, the seizure was getting a lot worse. I was trying to use the hoyer lift to lift him out of the wheelchair to get him into his bed when I realized I was running out of time. I ordered the nurse to grab the Diastat from the drawer in his nightstand and I lifted his 182 pound body out of the wheelchair and onto the floor where I administered the Diastat. Things still weren't getting any better and I thought for certain I was going to have to dial 911. Things eventually improved and I called him off of school. By the time the seizure was stopped, and I had him back in his bed, it was over an hour later. Not a good way to start the day for either of us. It was a nerve wracking day.

A week or so ago he had a bad seizure so I called Ped Neuro Nurse to see if we had got the diagnostics back on his VNS. As you may recall, in early March, they took some diagnostics from his VNS to send to the manufacturer to see if the battery was getting low. The battery has a life of 7-11 years however Dear Son's settings are so high that they thought the battery might be getting low. She e-mailed the manufacturer and I learned that the battery only had 2-3 months left. Well, the diagnostics were taken on March 11th, so his VNS was coming near the end of it's battery life. I had been worried about the VNS stopping and was afraid Dear Son might die if this device wasn't working. I spoke with her again on Wednesday and she had started the insurance approval process. Once that was complete, they'd check with neurosurgery to see when we could get Dear Son scheduled.

Once I had that news, I had to call the school nurse to inform them that the battery may not work. As part of Dear Son's emergency plan, they are instructed to use the magnet three times within three minutes prior to calling 911. I told them that if it's not working, they may need to call 911 sooner. Well, in order to do that, I needed to speak to the head nurse to make sure that everyone was clear on that and to see if they needed a written letter from Ped Neuro Doc in order to do this. The head nurse said no, that she would inform all of the people who care for Dear Son, of the new instructions. Dear Son has a nurse who rides the school bus (She takes care of Dear Son and another medically fragile student.) and has a CNA/Medical Assisstant that cares for him in the classroom.

After today's seizure, we had to speed things up. The primary insurance doesn't require pre-certification while the secondary insurance does. I called them and we got most of the issues ironed out today. On Monday, we'll get a surgery date from Neurosurgery and then the approval should be done.

The VNS works really well for Dear Son. It was implanted (under his arm) in 2004 and took about a year or so before I really noticed the improvement in his seizures. Since that time, it works pretty well. When he has a seizure, I just hold the magnet over the device which is implanted under his armpit and it will activate it immediately. (The device is on 24/7 and sends charges regularly; in a seizure, holding the magnet will immediately activate it versus waiting until the next charge.) He still is on multiple seizure medications, in addition to the VNS, to control his seizures. As you may recall, Dear Son's seizures were caused by a mutation of the ARX gene. With that mutation, children are born without any gaba, a key inhibitory neurotransmitter. He also has a progressive neurological disease. He had been having more seizures over the past few months and in January, his device was increased to the "rapid cycling" to give him better seizure control.

I have been a little on edge lately, worried about him. He's been having more seizures, some small and some larger and I guess I worry the most about sudden death. I have read that some kids with seizures can die unexpectedly. I worry his device will stop working and then he'll have a seizure and die. I am not a worrier by nature, and try to stay calm, however knowing how much he needs this VNS and the fact that it's not working very well lately, has me concerned. I will feel a little bit better once the surgery is scheduled. At that time, they will most likely upgrade his device to a newer model, versus simply replacing the battery.

Note: *A Vagus Nerve Stimulator, or VNS, is a device used to control seizures. The device is implanted under the armpit. When activated, the device sends a charge/shock up to the vagus nerve and for some unknown reason, that disperses the seizures. There are many settings on the VNS, and the VNS runs 24/7. A magnet, typically worn on the patient's wrist, is used in an emergency to immediately active the device. A Vagus Nerve Stimulator is like a pacemaker for the brain.