kristaphillips Don’t you love my title?
Sorry…
Anyway, quick update today.
We finally got a stool that we could test for the presence of blood. It was positive.
They also had all the other tests come back today from the stool sample we did earlier last week. Everything came back GREAT… except for something that I have no idea what it is, but means that carbohydrates aren’t being absorbed as well as they should. But she tested negative for things like celiac disease and a bunch of other NOT good things… so I’m glad for that!
Waiting to talk to GI today. But in rounds I was told the tentative plan is to do an upper and lower GI scope to do some tests and see how things are going. Depending on the schedule, this might be done inpatient early next week (which would delay our expected go home day… BOO) or we would have to come back to do it.
I don’t like either. But to be honest, I think I’d prefer inpatient purely so a.) we aren’t going home with bloody poop and b.) we can get it done quicker (i.e. it’s not scheduled out for like two months from now, which is common in out-patient procedures…)
The ONLY way I’d prefer to do it later is if they could coincide it with her heart cath in March. That would mean they only had to put her to sleep one time vs twice.
*big sigh*
Other than poop issues, Annabelle is doing GREAT! Less vomit (only once yesterday) and back on our home oxygen routine with only a few exceptions.
I got “out” of the hospital last night and went and saw my other kiddos and had dinner with them! I hadn’t seen them in a WEEK! MAN I miss those girls!!!!! *sigh* Really praying we can go home SOON… because I miss my WHOLE FAMILY! It made me sad to sit around a table and not have Annabelle there, though 🙁
BIG THANKS to my sister Kari Jo (and baby Pamela via belly…) for visiting with Annabelle last night while I went to see my girls! It helped SO much knowing someone was here with her!!
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| Awful lighting… but Happy Annabelle this morning!!! And in a pretty DRESS!! (although I think it highlights her poor skinny arms though.. ) |
I pray they find a solution for Annabelle soon!! If she isn't absorbing carbs then I can understand why she isn't gaining weight since formula is mostly carbs. I know you aren't a fan of blended diets, but that might be the easiest way to get food into her that her body can absorb. Many prayers for Annabele and yor family.
I'm not *against* blenderized diet… In fact I've been pressing them the last few days to let me implement a partial blendrized diet. I'm just super nervous about doing a 100% blenderized diet… mostly I'm nervous about not doing it right and the mechanics of it.
Plus, my cardiologist is not loving the idea at the moment.
Yet… ultimately we will wait for GI's recommendation and results from the scopes before we make a decision.
THANK YOU for your prayers!!! I really appreciate it!
Oh my goodness, that pic is ADorable!! love love love! Praying for some answers – and home soon for you! Oh, and don't feel bad about the skinny arms. I just posted some pics on FB of Bodie kissing Ella Beckstead, and I thought the same thing – "oh my goodness, look how skinny/scrawny his arms are!!!" (and he's in the 50th percentile!) Kind of goes with the territory for CHD kiddos I'm afraid…
awww… I need to go see those pictures stat!
Krista,
When did she switch to Neutramagin formula? My Ian (TOF) was diagnosed with a milk protein allergy and it took 2-3 weeks for the blood in his stool to clear up! & then it came back so we had to switch to the major expensive formula from Europe called Neocate! It was another 2 weeks before that settled in and the bloody stools were a thing of the past! Anyway, I was just curious because I wonder if the new formula has had a chance to work!! Just a thought! Love the picture; she looks all ready for spring 🙂 & she will love those skinny arms many moons from now when she's sporting her prom dress – ha!!
Hmmmm… I'll have to check on that formula! They switched her to elecare… which has completely manufactured proteins in it, or so said the dietitian.
See the thing is… she didn't have "bloody" poop with the pediasure peptid… she was just losing weight and not gaining, and couldn't handle in volume her 'needed' calories. Personally, I think when we switched to the higher caloried pediasure is when it irritated something in her digestive system.
Yet.. I dunno. A part of me is still glad we are doing the scopes. Maybe nothing is wrong, and I will be SUPER excited if it is just something normal that will clear up. But I'd hate for us to be doing all of this and "hide" the problem and then realize, WHOOPS, we missed something obvious that could have been found.
At my heart… I am a problem solver. Not a symptom resolver! HA! So once we rule out possible culprits… then I'll be okay with trying whatever formula works for her!
Praying for your sweet girl and your entire family! How wonderful that you were able to see your other kiddos! I can't imagine going an entire week without seeing one of my little ones! God bless you!! Praying for answers to the bloody stool questions and also for a VERY quick discharge so you two can get home where you belong! 🙂
We had similar trouble with my son. As a baby, he was highly allergic to milk protein (both caseine and whey) so he went on neutramigen formula as an infant. When he was 19 months old, he got a stomach bug (the diarrhea sort) which set him off. He was ill for 3 months with vomiting and diarrhea. His docs could not figure out what was going on. BEFORE they scoped him, the pediatric gastroenterologist tried a simple med for acid reflux. 1 week later he was free and clear of all of it. After 2 1/2 months of his illness, it seemed that over night he drastically lost weight. Went from 29lbs to 22lbs in like 24 hours. He became lethargic and somewhat unresponsive which is when we took him to the ER. He was negative for celiac, rotovirus, and everything else they tested for. Turns out it was simply the reflux which had been horribly irritated by that original stomach bug he got. The reason he lost weight was because he was no longer absorbing carbs or sugar via his intestine. What you said sounded soooo familiar!