Well yesterday CJ got admitted again into omaha childrens hospital. Main reason is because as always his stomach doesnt want anything to do with whats in it and he starts reching and would eventually throw up even though he has a fundo if we would let him go that long. but we can't watch him in that pain for that long. We have "learned" to stand by and pray and wait as long as we can but there is a point to when you just cant take it anymore.
Right now the doctors are stumped. they have done all the tests they can think of doing. The results give them no clues. One dr. mentioned he might have to have a tpn. but then either that went out door or that was an up in air still floating up there idea.
Yesterday they had his feeds to his "normal" at home feeds so they could see what we were telling them about. They ended up stopping night feeds b/c they too couldnt stand to watch him in that pain anylonger.
They then later on put him on reallll slow drip of pedialite to see what would happen and he couldnt even handle that. so this afternoon they put him on iv only no food or anything and will see what happens. they may try pedialite again tommorrow just depends how the night goes. b/c the night is the work. He already has been retching when nothing has even been put in stomach for a long while.
We are really flustered about everything. We feel this is just going to be another visit where they just pump iv's in him dont feed him for a few days send him home b/c he's doing better than two to three weeks hello were back again. We want to end this cycle. we as parents are trying to do everything we can think of. We know we have good doctors here. None like some in past. But for somereason he is a mystery. We have and are still continuing to pray to god, to either help him, heal him, fix him or at least give drs insight in what to do, or what will help him, anything really.
It just bothers me that CJ has to have sooo many hospital visits and yes I do know other kids do too. thats part of this sad world. The problem is we believe "hospitals" are the place to take our love ones to fix them and when they aren't being fixed its really hard. Not just hard on us w/ everything in adulthood, not just hard on cj b/c of everything he is going through, also hard on his siblings. This is hard on them, hard on friends and family who we have to count on to help us out and those are far and few and we treasure all we have.
We are lost, we want found and we know the only person who knows EVERYTHING going on is GOD. So please send up lots of prayers for him.
:•(
ReplyDeleteI've stumbled on your blog from a Facebook posting from tube feeding kids and I can so relate to your anguish. If you have any of your son's labs, please look to see if they ever checked bloods Sedimentation Rate. If it is high, it will indicate inflammation. See how bad his electrolytes (Calcium, Potassium) are imbalanced. Look for a high White Blood Count. See if he's anemic; low Red Blood count and low Hemoglobin (HgB). You'd be surprised that not every doctor picks up on certain clues especially if your being seen by residents in the ER. Check for high Eosinophilic count as well as Neutrophils, Basophils (these are all white blood cells with different functions). Go to to learn about Eosinophilic Disorders which are immunological disorders that affect the entire Digestive Tract.
I hope your Dr's have checked out his Gall Bladder, Pancreas and Liver. They work together in digestion and something as small as clogged bile ducts can cause issues or not enough enzyme production.
The problem with specialist is that they don't look at the child as a whole person. They only study one part of the body and are clueless to the rest of it. If you want to take him to my son's hospital clinic, A. I. duPont has a Diagnostic Referral Team. Can't hurt to give them a call: 302-651-4000. Looking for answers to strange symptoms is what they do.
Many blessings to your family.