Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Saturday, October 19, 2013

Jekyll and Hyde

Meagan has never really been a 'puker'... she seems to handle illnesses well and actually has never had a stomach bug as of yet (knock on wood).  So when she does throw up, it sends off a red flag to me because typically she seems to have a strong tummy.  In August, she had a few episodes where she would be sitting up playing and then suddenly be fussy and puke out of nowhere.  It would be forceful and go everywhere but then she was fine. And we would go days or even over a week without any other episode.  After her second birthday at the end of September, I noticed that it was happening a bit more, so I decided to keep a log to see if there was any pattern or a direct relationship to her feeds, etc...

We have been keeping this log now almost a month.  I finally called Dr. R's office last week because I was fed up.  Dr R's office said to watch and see how she does this past week and we would re-evaluate.  I was ok with that - she still had times and days where she was herself and I saw no reason to rush in.   But honestly, I was fed up with having a completely happy kid one day, to having a kid crying with pain and then projectile vomiting everywhere the next.  Now, even with Meagan's hydro, the first few times she did this we didn't go to the doctor or even the ER.  Hydro kids still get 'normal stuff'...so we waited it out to see if it was a viral bug, or a tummy ache from a feed.  But as the weeks have gone on and I have logged episodes, and noticing there is no pattern in time of day, situation, or frequency, my excuses and frankly my patience wore thin. Wednesday night was the final straw.  Meagan had three huge pain/puking episodes that night so I said that is it and took her to the ER.

Meagan post episode - totally fine and seems relieved.

Now EVERY parent will know that feeling when your child is so sick, or when they have intermittent things wrong and you finally go to solve the problem...they are mid-episode...and you walk in the doctor's office or ER and suddenly they perk up and smile or wave at people.  You are happy they are happy - but inside you are like "Really??" because you know you are back to square one with now having to explain what you are seeing at home.  Well, this time Meagan must have wanted some answers because as soon as I walked up to the ER with her, bam. She projectile vomited EVERYWHERE.  The floor, me, her clothes..I mean if you were within 3 feet of her, you were not in a safe zone.  I actually was slightly relieved because FINALLY they could see what I have had to deal with at home and I wanted answers.

The nurses saw everything and immediately assisted me in cleaning her up and got us a fast pass to a room.  We saw the doctor almost immediately and he was extremely nice and receptive.  He of course ran a CT scan and the usual checks for hydro kids.  He also ran all 'normal tests' to make sure we didn't miss anything.  Her white counts and other blood work was totally normal. No fever. The CT scans were said to not look "that" different but enough reason to investigate.  She was admitted for testing and observation. I was relieved to be honest because I can't keep going with her fine one day, and then projectiling all over my car, or the bedroom, or her clothes.  It's not that I'm complaining - I do not mind one bit cleaning up after her or dealing with the little mishaps of life. But, it is about a quality of life issue - for her and the whole family.  If Meagan wakes up one day and has a pain/throw up day, that's not fair to her - if there is a solution I can seek out to remedy that.  If she's having a bad day and it interferes with my other girls' activities, or important things to them, that's not fair to them either - we have to function as a whole family the best we can... and if there is a remedy to these episodes, it needs to be sought out.

There are a few theories circulating - some are GI related (formula intolerance, motility issues, something hidden inside we can't see that is intermittently obstructing her ability to digest all her food) and some are shunt related (it's working but I question,  is it working correctly for her?...she was over-draining causing her ventricles to be small (you can read about slit ventricles here) and cause pain episodes during which her body projectile vomits to relieve the pressure/pain...etc.).  All are viable and reasonable explanations - and all could be contributing factors.  We just have to explore each one and see where that leaves us. My mommy gut says this is a shunt issue - and mommy gut is usually right.  But going from a gut feeling to hard evidence to getting a doctor to do something about it are much larger leaps that take a lot more time.

Meagan before an episode - she seems to breathe heavily and hang her head to the right. She also gets upset. This can happen right before or hours before.

So that's basically where we are.  We are waiting on GI to come and re-evaluate her tube and site to make sure we aren't missing anything.  She has had one good day here in the hospital, and one bad day yesterday with two huge projectile and fussy episodes.  So we are still at square one.  Of course Dr. R had to leave Friday to go out of town. He was very sweet with Meagan of course.  He stopped by and snuggled her a little, rubbing her head.  He told us he was sorry...that he felt he was leaving us "midair" ... but what is he supposed to do. At this point we have no "answer"... only theories which we need to test out.  And since the problem is intermittent, we may not get that answer directly.  At least not this weekend.

There is talk of her going home today - to what end I don't know. I'm going to continue to log her episodes and what she is doing beforehand and continue to press the doctors for direction. I'm ok with the fact that this may take a while to figure out, but I'm not ok with just going home with their hands thrown in the air.  My girl deserves better and I need at least a plan of action to attempt to fix these episodes.  I promised Meagan the best quality of life I can provide - does that mean never suffering or having pain? Of course not - but it does mean trying my best to lessen those instances and remedy them if at all possible.

Snugglin my girl!

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