Elliot’s Expeditions

Wordless Wednesday - Firsts

2009-06-17T08:42:00.001-05:00

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Lessons

2009-06-06T10:46:00.001-05:00

So many learned over the last two and a half years. I’m thankful for each and every one of them. We keep on going.

What I find most compelling about Elliot is that his zest never seems to go away. They have cut his skin, removed parts and portions of his body, sutured and fixed, but always left in tack has been his soul. Completely unscathed.

Smiles each and every morning, while others get up on the wrong side.

Laughter and delight in small things, while many fail to notice.

Disregard for ugliness, deceit. He knows nothing but beauty and candor.

They can make thousands of incisions and it remains: a spirit and character full of life, of fitness and heartiness and health.

I would venture to guess that I’m not the only mother who sees it. Many of our children undergo the procedures, surgeries, pokes, prods…outside skepticism regarding “human ability” to keep going.

Would you not agree? The courage is unswerving…and the smiles remain. Nora says he's an angel. Well, yes, he is.

Many ask “How do you do it?” Funny, I don’t do a thing. He does. I simply watch in amazement. I pray a lot and I witness. Sure, I advocate, but only because he does not have the words yet to do so. The expression, however, advocates for itself.

So lessons – those of courage, of course, the most important!

It's true. REALLY!

2009-06-02T14:34:00.001-05:00

I have become so very accustomed to reporting bad news.

It is almost harder to talk about something positive. But, low and behold, I am in receipt of excellent news.

I was cautiously optimistic on Friday when gastroenterology phoned and indicated that Elliot’s most recent liver function tests were normal. “Normal?” I asked! Normal liver enzymes? I tried not to become too elated. I did not want to jinx the remainder of the tests.

We visited with the most outstanding rheumatologist known to man on Thursday. I loved the doctor. I don’t love many doctors. This doctor was very calming…but very matter of fact at the same time. As I have noted previously, I can now throw bedside matter right out the window. I don’t care just how “nice” the doctors are anymore. Give me the facts, sans any fluff. Tell me what’s wrong and how we can or cannot fix it. This doctor ran each and every test in the book. This doctor asked for a photocopy of my long and very technical diatribe of questions. This doctor took me seriously and addressed each and every concern which I presented him with.

This doctor…get this…

CALLED ME TODAY AND NOTED THAT ELLIOT’S ANA WAS NEGATIVE –

HIS TESTS FOR AUTOIMMUNE DISEASE (INCLUDING AUTOIMMUNE HEPATITIS, LUPUS, A MULTITUDE OF THINGS) WERE NEGATIVE –

ELLIOT, IN HIS ESTIMATION, IS HEALTHY!

Yes, I said it, HEALTHY! They went so far as to tell me that Elliot did not need to be seen in their clinic again. WOW!

I am literally in awe. But…you know me…cautiously optimistic. My son still has liver fibrosis and we do not know what has caused it. Children’s is bringing on a stellar liver specialist in July. We will more than likely run additional tests...run enzyme tests again. We need to know what caused said damage. BUT…

The primary and most logical cause for the damage was autoimmune hepatitis.

My son does not have autoimmune hepatitis.

What I am assuming, the next logical assumption, is that Elliot’s gallstones caused the fibrosis…they “must” have moved out of the gallbladder. They were not present in pathology. Where are they now? Ahh, questions. But, the good news…the best news in over a year of hell…is that Elliot is not suffering from a horrific autoimmune condition; a condition which would have required steroid treatment, leaving him oh so susceptible to infection. No steroids. No hepatitis. Just my boy.

Can we really focus now on teaching our son? Can we focus on his oral aversions? How about we try to teach him to eat…to communicate…to walk.

Can we focus on something other than an autoimmune condition, a strange process where the body attacks itself?

I do believe so. I think I will frame his eleven page lab report. I think I will stare at it in amazement!

I have always said that Down syndrome is “cake.” This other stuff has been hell. Onward and upward for now. Go Elliot GO!!

The missing piece

2009-05-27T09:25:00.003-05:00

Have you ever tried to put together a jigsaw puzzle, gotten really close to finishing it and found that you had lost a piece? The cat drug it away or whatever. That’s where I am at with regard to Elliot’s medical conditions. We have no diagnosis and we keep getting referred to this specialist and that specialist. It’s becoming so infuriating that I’m ready to drive over a cliff. No one has a definitive answer. My child has liver fibrosis (yah, among other things) and that’s nothing to shake a stick at.

And me? I have given up on the Internet and now go straight to medical texts. The Internet can scare a person…scare them because it leaves out some of the fine print…the print that only someone with a medical degree can understand.

The Internet makes a person try to read between the lines and that, I have found, is detrimental to my own health!

It is scary just how much I understand. But really, I am no physician – just a mother with extremely good gut instinct. Something is wrong and I cannot sit still until we figure it out.

I pulled all of Elliot’s medical history yesterday and tried to make some additional sense of it. What’s also scary is just how much our past pediatrician has missed. Better leave that one alone.

I have his MRI of the brain and the spine. I have his neurologist’s dictation; the dictation of his GI; the dictation of the geneticist; the pulmonology reports; his never ending CBCs; the thyroid antibody tests; pathology of his liver…of his gallbladder which he no longer has…I have it all! What I do not have is an answer.

Tomorrow we will head to rheumatology, yet another sub-specialty in internal medicine and pediatrics. I have my list. You know, the list of potential syndromes…potential blood work that needs to be completed…potential diagnoses. This doc is bound to think that I am ludicrous. I’m not. Thus far, my drive and gut instinct has gotten me a hell of a lot further than the pediatrician ever went.

I am beginning to think that all of the issues are somehow linked. It’s not his Down syndrome. It is something else. I’m nearly convinced.

What’s interesting is that Down syndrome is “cake.” If it were only Down syndrome, I’d be jumping for flipping joy. But again, I think it is something very, very complex…very, very rare…and very, very Elliot: my dear medical mystery of a boy! God love him.

Wordless Wednesday - Innocence

2009-05-27T06:41:00.003-05:00

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Ballet Princess

2009-05-15T11:08:00.002-05:00

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I'm a lucky momma...

2009-05-11T08:53:00.003-05:00

So, we tried to take a good Mother’s Day photo to no avail, so instead are some of the outtakes. Ah well, a day in the life. Nora’s ballet dress rehearsal photos also. Such a pretty princess. Elliot seems to be in good spirits. We’ve had a bit of an upset tummy as expected…tubes down his throat, into his stomach and well…you know the rest. His eating (drinking rather) is adequate. We still wait. UNMC should do a good job – liver experts and all. Yesterday I tried to forget all of it and tried to relish in the fact that I have been blessed with three perfect children. I did a pretty good job.

Fibrosis – the medical junk

2009-05-07T08:47:00.002-05:00

According to yesterday’s biopsy result (explained so brusquely to me over the phone) Elliot has liver fibrosis. So, what does this mean?

"Liver fibrosis refers to the accumulation of tough, fibrous scar tissue in the liver. Formation of scar tissue is a normal bodily response to injury, but in fibrosis this healing process goes awry. When functional liver cells are injured due to viral infection, heavy alcohol consumption, toxins, trauma, or other factors, the immune system is activated and the repair process swings into gear. The injury or death of hepatocytes stimulates inflammatory immune cells to release cytokines, growth factors, and other chemicals. These chemical messengers directly support cells in the liver called hepatic stellate cells to activate and produce collagen, glycoproteins (such as fibronectin), proteoglycans, and other substances. These substances are deposited in the liver, causing the build-up of extracellular matrix (nonfunctional connective tissue). At the same time, the process of breaking down or degrading collagen is impaired. In a healthy liver, the synthesis (fibrogenesis) and breakdown (fibrolysis) of matrix tissue are in balance. Fibrosis occurs when excessive scar tissue builds up faster than it can be broken down and removed from the liver."

WHEW! There is also fibrosis in the ports. This is not a good finding!

Elliot has had elevated (mildly elevated) liver enzymes for some time (up and down for some time). He also has a positive ANA (an autoantibody NOT specific to the liver suggesting autoimmune disease). I would suspect that the ANA is present as some “type” of autoimmune disease is present, but hepatitis? We are uncertain. I have autoimmune thyroid disease. My body attacks my thyroid. A person can live without a thyroid gland. I was praying for thyroid disease. The tests for it in Wee E’s body are negative.

But we don’t know if he has the following (LIVER Specific antibodies):
1. ASGPR, anti-asialoglycoprotein receptor antibodies
2. LP, anti-liver-pancreas antibodies
3. LC1, anti-liver cytosol type 1
4. SLA, anti-soluble liver antigen

Elliot’s liver biopsy has been sent to the University of Nebraska Medical Center. There are liver specialists present. Our upper GI doc does not conduct more than two or three liver biopsies per month. The folks at UNMC do. That’s where we’re at.

On another note, Elliot’s gallbladder was sent to the lab as well and get this: THERE WERE NO GALLSTONES PRESENT! What? Either the radiologist who read the initial ultrasound report had his head up his ass (excuse me) or Elliot’s supposed stones were reabsorbed or simply moved into a duct. If indeed they were there and did definitely move into a duct, they COULD have damaged his liver. That would be the ideal situation. But, ideal situations seem to be few and far between where Wee E is concerned.

Generally, I can write with creativity. But today, I cannot. So little to say, but so much time--time to wait for additional tests and additional results--additional pain and additional tears. Despite my empty mouth, the words are in my head, but today, only facts. The fact: Elliot is very ill. In a nutshell, that’s it. Very ill.

Awarded

2009-05-03T15:37:00.005-05:00

Lincoln Public Schools does a wonderful job incorporating the importance of the arts in their core curriculum. And each year, star artists are chosen from each grade school. Nora was one of three first grade students selected this year from her elementary school. The art remains on display at the district office (who hosted today’s reception) for a bit and will subsequently travel to an area business and remain on display for a year. I was a proud momma today. Jeff unfortunately is still at the hospital with Elliot who is nevertheless in great deal of pain. I was happy, at very least, that one of us could dote on our very deserving 7-year old artiste! She’s a gem...and a talented one at that!

Dear Wee E - Update

2009-05-01T22:33:00.007-05:00

I’m home and Elliot resides at Children’s with Jeff. He was looking very weary following the procedures:

1. Gallbladder removal: Surgery performed laparoscopically using 4 small incisions in Elliot’s abdomen. In addition to removing the gallbladder, our surgeon performed a study called a cholangiography: a dye study of the bile ducts. The study used the same 4 small incisions that were used to remove his gallbladder. The purpose of the study was to make sure no gallstones had fallen out of the gallbladder into the main bile duct. They had not.

2. Liver biopsy

3. Upper and lower gastrointestinal endoscopy with systematic biopsies

The findings were interesting. The surgeon indicated that he could not “feel” the stones after Elliot’s gallbladder was removed. They were obviously present on the ultrasound, but who knows. His organ is off to the lab.

His gallbladder was embedded in his liver. It was hard to remove. His liver appeared to be composed of normal tissue and to the naked “eye” through the scope, it looked good, but…it had an “extra lobe.” This shocked the surgeon and while he did not think that this finding posed a problem, he found it to be very odd. That’s my boy! Biopsy off to the lab as well. We wait!

Elliot’s endoscopy series also brought something to our attention that “should” have been caught (on numerous occasions) by our pediatrician and by his ENT. Elliot’s tonsils are so enlarged that they are touching. He has severe oropharyngeal obstruction including: enlarged tonsils, a short neck and a somewhat enlarged tongue. Ding dong! Apnea? Yep, how many times have I also mentioned THAT! We’ll see.

Let’s see. I “think,” unless that I am some kind of a nut, that this (tonsils that is) may be the root cause of Elliot’s difficulty swallowing, hence probable inability TO EAT SOLID FOOD! And how the heck was it missed? So yes, we’ll head back to the ENT. Oh, and zero infection was present. Sure, they could have recently become enlarged, but that is not my gut instinct. Ah well…onward and upward.

I proudly made it through the day. Cried my eyes out as he was taken away, but stopped promptly as I do love his surgeons. Thank you, Rhonda, for helping me maintain a sense of confidence in them (and for the “text.”) xxxooo to you!

High hopes that he’ll head home tomorrow. Hoping for zero right shoulder pain too (gasses escaping). Strange, huh?

My boy is so brave. And, because of him, I’m becoming a bit more valiant as well (day by day).

Thanks for all of the prayers! And, “Michael P.”, thanks for the visit. You’re a love!

…updates following biopsy results.

Scared. Stiff.

2009-04-29T21:14:00.005-05:00

I don’t do surgery. Jeff does surgery.

I have horrible thoughts when he is wheeled away…veering down the hall to go under the knife. They took him away 30 minutes following his grandiose entrance into the world. The ambulatory team took him before I was even made aware of his diagnosis.

That is what I remember and it was horrid. I received his diagnosis over the phone (not even a land line – my dad’s mobile phone) from a revolting neonatologist. The man should not have the title. That’s what I remember.

I can handle all of the post-operative care in the world, but I don’t do surgery.

The tubes.

The wires.

The sometimes inept staff.

It does not bother me.

But watching him going down the hall, out of my sight…it terrifies me. My control is gone; ripped away and he’s in their hands.

I know. Trust.

It is so hard to trust. Too many mistakes, misdiagnoses, etc. have been made.

So, Jeff does surgery. I come later.

Friday, I’m “doing” surgery. For some odd reason (damn that instinct) I feel the need to be there this time.

God help me, please. I can at very least trust in a higher power.

The tree - among other things

2009-04-19T08:57:00.005-05:00

I’m trying to comprehend just why I am so sad as of late. I am surrounded by such beauty.

Case in point: the tree.

I love this tree and each year I pose with the kids and the tree as it blooms. Last year, we had horrid torrential winds and the dear tree lost its flowers before the yearly photos were taken. Yesterday was a gorgeous day, albeit a day where rain was forecast at 80%. Morning rain and afternoon glory. All the glory that spring is supposed to bring.

Isaac and I had our yearly tree photos. Elliot stayed inside. Elliot likes it inside. He is safe inside and I think the association of going anywhere is analogous to going to the doctor / hospital / emergency room is present. In his brain, the association, the sad association, exists. He now throws fits when we get in the car, when we step outside, when we go to grandma’s for Easter. Again, I go back to autistic tendencies. Perhaps to social anxiety disorder. It is not people he is afraid of; it is places. Just as long as people come to us, in our home, he’s okay. He hugs, he maintains eye contact, he plays, he approaches, he loves…anyone who comes HERE. But, step out of the safe zone and all hell breaks loose. I cannot push him in the stroller at the grocery. I must hold him. I had to hold him most of the day on Easter. Heaven forbid that I would have attempted Mass.

So, the sadness. I’m scared and sad for my boy. His surgery approaches. His life of just over two and one half years has consisted of surgery, of procedure, of doctors now who say find another group because your mother is “difficult.”

Will my life now be full of people who find me to be difficult?

Difficult because I advocate for my son who is now so petrified of the world that he cannot step out of our box; my boy who cannot even fathom to enjoy the tree in all of its splendor?

Indeed, I am surrounded by beauty. But, now I struggle to enjoy it for what it is because a part of me, my beloved Elliot, cannot.

I need to help him. I have vowed to help him. I am on this earth to help him. I keep saying that “if you don’t fall down, you cannot get up.”

I suppose I am sad because we keep falling down. “Up” has to be somewhere in the distance.

Bucket boy~

2009-04-14T14:10:00.003-05:00

Elliot has been perpetually enthralled with this tub at my mother’s. I finally let him get in on Easter. He looks like one of those Anne Geddes babies!

Sweet boys of mine...

2009-04-09T14:16:00.003-05:00

May Day will be a good day.

2009-04-03T09:26:00.001-05:00

That’s what I am telling myself.

I have forever loved May Day. Spring has sprung!

Mom and I used to make the beloved baskets. You know; the ones with Dixie cups and pipe cleaners: popcorn in the bottom and M&Ms on top. Nora and I go overboard with our May Day baskets. Only young once, unless you’re me and feel like a teenager in an almost 40-year-old body!

But on this May 1, I might just age another ten years. We repeated Elliot’s chest exam yesterday. He’s cleared for surgery.

This May Day, instead of handing out goodie baskets, we’ll remove Elliot’s gallbladder, biopsy his liver and complete both an upper and lower endoscopy. The surgeons, of course, are also suggesting a gastric feeding tube. “Perfect timing,” they say. I’m more than a little bit leery. Eenteral feeding? Well, he does swallow, so we may be creating a monster…

The kiddo does not eat anything solid; he won’t open his mouth for the spoon, the cracker, not even a lollipop. He generally takes his Pediasure from a baby bottle in stride, but do I provide him with a crutch so he does not feel the “need” to ingest anything?

Personally, (again, momma’s gut instinct) I think that Elliot does not eat solid foods because he is simply in pain. I mean, he’s dealing with an abundance of gallstones. He HAS to be in pain. All adults that I speak with that have suffered with gallstones speak of pain. They speak of appetite loss. They say that in a nutshell they just feel horrible.

I know; we have gone down the road of oral aversions based upon cognitive delay, habitual behavior, even autistic tendency. And sure, Elliot does indeed exhibit some behaviors that are found on the autism spectrum. “He has not LEARNED to eat.” Eating is a learned behavior. But, will he learn if I hook him up to a feeding pump? I don’t think so…

So, what is more important: immediate weight gain or long-term solutions? At a loss.

May 1 is the day. Risk is plenty. But, considering that they have opened up my boy’s spine; he’s kicked the hell out of much worse (you all know the details), I think we’ll be fine. The surgeons are smart. You know me; I can no longer tolerate foolishness.

Nora and I will extend the holiday. May Day will be Sunday for us! Elliot will be home; we’ll have much to celebrate.

My "Wee E" and my Computer

2009-03-28T15:36:00.003-05:00

My boy is home. He’s still very ill, but home nonetheless. RSV hangs on like I have never seen and I suppose it hangs on even worse in a wee one with Down syndrome. I do not wish a combination of RSV/pneumonia and Influenza on the worst of my enemies. The stuff is horrid. Heck, the illnesses are horrid alone, but unite all three and look out! Isaac, of course, is back to his Isaac self. He kicked the illnesses right smack dab in the bottom. The kid is a monster and I love it!

Speaking of illness and infection, my computer is at the doctor getting a dose of something today as well. I’m on Jeff’s system, wondering just how his is so much faster than mine; wondering why he has the new laptop and I use the antiquated one. We bought his as a back-up, and he has taken it over. Transferring my business files, my Outlook email and all of my stuff in general would prove to be a nightmare, so the old hooter is at the shop getting an overhaul. I sure do hope that the computer docs can do their job. We all know how I feel about docs in general lately. I suppose par for the course if the thing is beyond refurbishment.

Back to my itinerary for the day. Perhaps I’ll vacuum instead of trying to work on Jeff’s computer sans my personal stuff. UGH!

The Elliot report

2009-03-22T09:07:00.002-05:00

Outpatient observation has now been upgraded to in-patient status. RSV, Influenza A and yep, another pneumonia. Jeff resides at the hospital; I reside in a robe and jammies at home with Isaac who (bless his heart) is still sleeping at 9 a.m.

They did remove IV fluid. Goal: get him to ingest a wee bit of fluid. Diapers are wet – of course. Funny, the on-call kept saying, “But, Michelle, he has wet diapers…”

Well, sure, you have pumped enough fluid in him to water our lawn on a corner lot! No kidney in the world is gonna hold THAT much fluid!

Temp is stable; sats are up and down. My inclination, regardless of how horrid his cough sounds and how often they whip out that nasty suction machine, that they WILL send him home today.

Again, goal is to drink. I’ll be fine, won’t I, if I can get him to drink…consistently drink? Prayers for a tired momma who is going to be in jammies all day, please? And wow, is it really Monday tomorrow!? UGH!

Elliot's most recent set-back...

2009-03-20T20:25:00.001-05:00

Elliot now has RSV. We are back in-house at the hospital (UNBELIEVEABLE...we made it) as Elliot needs IV fluid. As in typical Elliot form, he is refusing to take any fluid. He feels horrible. Pneumonia seems to be dissipating, but now this which could in turn cause yes another pneumonia. I am literally in awe. Finally, one of our boys is where he needs to be. Isaac received his second Rocefrin shot this afternoon and will receive another tomorrow.

We’re tuned into CNN. Someone tell me why President Obama used such inappropriate words with regard to the Special Olympics. I mean. COME ON?!

I don't know what else could happen?

2009-03-20T12:32:00.002-05:00

Isaac has pneumonia. He is horribly ill.

His respiration increased to over 60 breaths per minute. His temperature skyrocketed to 105 again. His saturation dropped to around 80. But, did they admit him? No. WHAT DOES IT TAKE TO HOSPITALIZE A CHILD?

I called the new pedi who saw him in the morning before his temp hit the roof. Of course, his sats were normal in-house and his fever was low grade. He was sick in her office but not “ill.” She also diagnosed with a bilateral ear infection. She indicated that after the antibiotics kicked in, we would see an improvement. He became worse, so I called our current PCP and Isaac was seen by their on-call doctor and he immediately said “pneumonia.” He received an antibiotic shot of Rocefrin.

We have Elliot’s follow-up appointment today with the current PCP – do note that the new PCP does not want to treat Elliot until after his surgery. I understand, but not completely. Loose ends and all.

To my dismay, the practice administrator with our current PCP called yesterday and noted that they will no longer see us. I, apparently, cannot openly disagree with the hospitalist’s behavior. I, apparently, cannot say it is NOT okay to discharge a child with RSV from the ER without actually seeing him. She told the ER physician over the phone that, based upon his behavior in the ER, that Isaac could go home; after all, he did take a few sips of electrolyte fluid. And now, he has pneumonia, and is MUCH worse than Elliot ever was with his.

We’ll have the follow-up for Elliot’s pneumonia and 30 days if we “need” anything, but I am afraid that Elliot will not be well in that period and I’ll have no one to clear him for his surgery that needs to take place ASAP. He needs a pre-op. Of course, I have excellent relationships with the physicians at Children’s. They phone me personally to check on Elliot. But, they reside in another city. Do I find a PCP in Omaha and say to heck with the situation here locally? Do I drive 60 miles when Isaac or Nora comes down with the flu or needs to be seen for a well-child check?

I have told a few people about the situation and they are all appalled. I’m not a bad person. I merely spoke my mind with regard to our children’s care. I disagreed with a practice physician’s decisions. Do I not have the right to do so? Do I not have the right to question? What do I have the right to do? People say, “Oh, you are such a good advocate.” But look where it has gotten me. I do not have a doctor for Elliot until after his surgery. My son who needs immediate gallbladder removal, a liver biopsy…you know the story, does not have a PCP until after his body is cut into again.

I just want to go away…away to a place where physicians care for their patients…a place where the doctor-patient relationship is still paramount. Does anyone know where I can go, besides back to the side of my children’s cribs to cry?

On a side note, if indeed Isaac is not beginning to improve by late in the day, I WILL make the silly 60 mile trip. And I do believe that a children’s hospital will admit. And if they don’t, well…then I am just illogical, insane, hell, downright mad. It has to be me that is crazy, right? Not them.

Update

2009-03-18T13:26:00.003-05:00

Isaac has RSV. The hospitalist with our current pedi practice refused to admit him. The ER doc’s hands were tied as his chest x-ray is clear and he decided to ingest a bit of fluid while in-house at the ER locally. He turned a lovely shade of blue at home this morning and his temp was 105. Temp in-house at the ER at 101.

So, here we sit at home, and Elliot is at risk. My hands are still tied as all of our children's records have yet to be transferred to the new pedi group. Just phoned them to discuss protocol. I'm trying to get him admitted. I have NEVER been angrier. Never.

Angry, scared, and just plain fed up. My heart is filled with hatred and I don’t like this feeling.

Sickness hits again

2009-03-18T06:50:00.001-05:00

Isaac’s temp spiked last night. He topped off at 104. Petrified? Yep! We were never told if Elliot’s pneumonia was bacterial or viral. I asked for the blood culture results. Think they gave them to me? I’m gambling that it was viral, and had that hospitalist not acted so inappropriately, we would not be dealing with yet another very sick child.

His breathing is rapid; I can hear the wispy, raspy sounds when I place my ear on his chest; he refuses his bottles and food. Seems very familiar. In fact, identical to Elliot’s symptoms, yet Elliot went down hill all too fast.

We’ll head to the pediatrician’s soon and check O2 saturation, etc. However, I will NOT go to our normal pedi. I have all three kids on the books with a new group. As I keep saying, I have had enough of ineffectual behavior. If we are admitted, I so hope we run into the hospitalist. I have words...many words for her.

Prayers for my "pigpie" – aka Isaac?

I think I'm done...

2009-03-15T15:14:00.002-05:00

Of course, the thought has crossed my mind, but I think it is time to take a trip to Mayo in Rochester. A dear friend from high school sent me a note in response to a request. Her father is the best upper GI doc here in the city. Although his practice does not see pediatric patients, I asked for her father’s opinion regarding the complexity of Elliot’s medical status.

“Take him to Mayo.”

He indicated that the physicians at Children’s should oblige. We’ll see. I won't bother asking for the referral from our PCP locally. They will laugh at me and I have had enough of that.

But as things become more and more mysterious, I think we need to see the best of the best. I cannot deal with anymore behavior that I consider to be worse than inept.

Anyone been? Tips for a scared momma?

Bitter momma

2009-03-12T09:17:00.004-05:00

Yea, pneumonia bites. And, it bites even worse when it hits prior to a major (and quite compulsory) surgery that was to be completed Friday. Oh, and what bites even more is a hospitalist who sends your boy home from the hospital after two days of IV antibiotic, not eating sufficiently, and generally, still sicker than sick.

Antibiotic aspiration further exasperating pneumonia? Well, apparently not in her book.

“You’ll get him to take them, Michelle.”

“Come on; you can do it.”

My blood is boiling. The charge nurse indicated that he was not ready to be discharged. The charge nurse talked to the hospitalist. The charge nurse, bless her heart, got no where.

The pedi practice that employs said hospitalist indicated that it was okay for him to be discharged as well. Sure, my child who eats nothing and still primarily refuses his bottle because he cannot breathe sufficiently, hence cannot suck, can easily take compounded antibiotic through a flipping syringe.

“Just bring him into clinic today.”

“We’ll check him over.”

Damn it – it is 16 degrees and my child has a horrible pneumonia. Makes sense to take him out into the cold, hoist both boys into their double stroller seats and make our way into the clinic. Makes a lot of sense, don’t you think?

Hospitalist frequents all hospitals in town, so I cannot simply take him in to another ER. If I have to readmit, I will head to Children’s in Omaha (with all three of my children). That makes sense too, don’t you think?

Oh, and dear hospitalist discharged Isaac at birth sans the results from a thyroid panel. She indicated that I needed to learn how to take care of a “normal” child again. Needless to say, we saw a pediatric endocrinologist for over 8 months due to Isaac’s severe thyroid problems. Smart lady!

So, here we sit...at home, stressed out beyond belief. No surgery Friday, obviously. I should have asked Ms. Hospitalist if she’d clear him for surgery as well. Makes sense…

And so the song goes…

2009-03-05T08:52:00.001-06:00

Have you ever been driving along, or simply sitting in your vehicle, and a song’s lyrics just smack you? I have heard the song over and over again, and, like the masses, I do love Snow Patrol. Truly, though, I have never really “heard” one particular song’s lexis.

I am petrified about next Friday’s procedures. I know the surgeon is stellar. And really, they have to be rock stars in their field or they will not touch my son with a knife. I simply say, “No,” and find someone else. It has to be done that way. He’s just too fragile. Bedside manner is no longer relevant. Congeniality is not a prerequisite, but this particular surgeon excels in that particular area as well. Rare, but true. I’ve learned how to interact with these personality types. They don’t have to be polite (and generally, they are not), but I will not tolerate ineptness (and it has run quite rampant when it comes to our son’s care).

This time though, we’re in good hands and lucked out as dear pediatric surgeon is really quite a doll. But still, organ removal? Organ removal in a two and a half year-old child who has lived through an 8-week premature birth, severe thyroid problems, a pretty risky spinal surgery, has a Dandy Walker variant, has venous hypertension, a compromised airway, and merely weighs in at a not-so-hefty 21 pounds. Nuf said!

So, the song comes on…

Open Your Eyes

“All this feels strange and untrue
And I won’t waste a minute without you
My bones ache my skin feels cold
And I’m getting so tired and so old
The anger swells in my guts
And I won’t feel these slices and cuts
I want so much to open your eyes
Cause I need you to look into mine
Tell me that you’ll open your eyes
Get up get out get away from these liars
Cause they don’t get your soul and your fire
Cause they don’t see what I see in you
Take my hand knot your fingers through mine
And we’ll walk from this dark room for the last time
Every minute from this minute now
We can do what we like anywhere
I want so much to open your eyes
Cause I need you to look into mine…”

Yep, hit me like a ton of bricks as I sat sobbing in the damned drive through line (Indeed; I’m too tired to cook). Pulling up, the poor lad looks at me in horror.

“Are you alright, miss?”

“Um, sure…just a bad day,” I say.

Needless to say, I could not ingest the stupid roast beef sandwich and fries. Just had a glass of red wine and went to bed.

I want it to be over…

ALL

Over!

So...the gallstones, among other things

2009-02-28T18:07:00.002-06:00

I am trying to make light of the situation, but indeed, Elliot’s gallbladder will need to be removed in the very near future. I think that it is warranted as a pancreatic attack is not something we want to mess around with. Even though, I am not crazy about removing an organ (albeit a superfluous organ) from my two year old boy’s body.

While in the general vicinity, we will also conduct a liver biopsy. The antinuclear antibody (ANA) result still leaves the specialists (and me) puzzled, so we need to determine if indeed it is liver related. I’m trying to stay positive regarding the ANA, as it is a non-organ specific autoantibody.

The question remains: What percentage of patients with autoimmune hepatitis present with the above, since it is not specific for liver antigens? We’ll soon find out. In the meantime, I strangely pray for autoimmune thyroid disease.

God bless my boy. Such a hero.