Hospitalization AFTER endoscopy

Hi everyone-

Apologies if anyone was worried (and again, many appreciations for the encouraging wishes), but we had an unforseen detour after the endoscopy-complete scary nightmare-but we’re back home now and Ian is smiling. Had no computer since Tuesday and was going crazy dying to do research and talk with you all on what they were saying to us, but had to fly solo. So here’s the story-

We woke up at 4am to feed Ian before endoscopy (rules of no feedings 8 hours prior). Ian ate about 5 oz (always did well first feeding) and promptly projectile vomited all over our bed. Was concerned because knew he couldn’t eat again until after 3, but gave him pedialyte a little while after. My parents and I got to the hospital and everything moved pretty smoothly UNTIL we go into the proceedure room. They tell me the anesthsia (still can’t spell that) will be by needle because of soy in other alternatives. However, because Ian had been vomiting and not eating for a week they had a hard time finding his veins. He wasn’t dehydrated yet, but very close to it. Literally, they had me hold him as they stuck him like a pin cushion. He screamed and screamed-it was HORRIFIC. My father eventually had to go out and hold him because I couldn’t stop crying. It was an hour total-no exaggeration. Finally, the doctor told me they would have to put him to sleep with a needle, then hydrate him, then find a vein to put him under and do the proceedure. We said ok because he was getting so bad with the vomiting and not eating. From there, it was another hour. Doctor came out and said preliminary pictures showed several ulcers in esophogus and stomach and the biopsys would tell us more but wouldn’t be ready until Friday. She then said she wanted to admit Ian overnight to hydrate and observe. So off we went and dh met us later. Ian woke up (so sweet and sleepy and very needy) and couldn’t eat anything but I wasn’t surprised. They also started intravenous Prevacid and Reglan (which I screamed and hollered about but Dr. explained we had to stop the vomiting and she was using a tiny dose) so we relented because we trust her.

Next day-pedialyte and elecare mixed and he ate ok-20 oz but doctor asked if we’d mind staying 2 nights because Ian was still coughing like crazy and not up to par, so we did. However, I did talk her out of the Reglan and she switched us to erythromycin(which I never knew was used for reflux but apparently in small doses-it’s not an antibiotic and quite effective for dge). But Ian would not eat anything all day -1 oz-I’m not kidding. So we had to stay another night for hydration. At this point, we’re like-what the heck is going on-so they did an xray and again saw no stool. We also got back the biopsys and they showed no eosinophillic disorder (thankfully) or anything else scary (colon or otherwise). Just severe esophogitis-damage from reflux they suspected was prompted by all the viruses Ian has caught at daycare over the last month-including stomach one they guess this last time. In fact, we still have one blood test we’re waiting on testing Ian’s gamaglobulin levels which could explain the weak digestive system and is treatible (my husband and his sister both had to be treated for week gg levels when they were born but it was respiratory related not digestive and both were fine). Not bad enough for surgery but intensive meds. We’re still blown away-he wasn’t showing any signs of that-but I guess it manifested itself in a different way? We’re also not sure that the reflux is just a symptom of something else but dr. said hold off on more tests until we get the reflux under control and he’s eating again. I do agree on that as he’s been through hell these last few days. People were sticking him with needles constantly and he just was miserable and scared entire time we were there. He’s now afraid of strangers and that breaks my heart. Inconsolable at times too. Finally, today, third day-still no eating and Dr. wanted us to stay over the weekend and started talking about a tube. I was quite frustrated at this point and said I wanted to take Ian home for the weekend because I felt he was thriving in the hospital because in his eyes, he was being terrorized. Then, we could always revisit the tube as an outpatient. I just had to get him out of there. So, doctor to her credit, said that’s a good point and released us with prescriptions for everything and switching to prilosec very high dose (she said some kids do better on it). Also, she knew about the instability and referred me to a pharmacist in nyc that is very careful on that. Finally, we came home, made a bottle for Ian including Simply Thick again and a dash of brown sugar and he ate 5 oz great. CAN’T WAIT to get that elecare in vanilla flavor.

Not quite sure what we’re thinking/feeling right now, but my happy little boy is back and dancing around in his bouncer right now! I hope the eating continues and the meds come through so we can avoid a tube. I think the new elecare will help. He’s still got a nasty cough (sounding very mucousy) and we’ll wait for the gg test, but I’m thinking about becoming a stay at home mom. Financially, not good, but we’ll make it work. With all these meds, him getting sick effecting the reflux (he’s always better after time away), and starting solids next month, I think it’s better right now-especially because we’re so far from family. Can always restart down the line perhaps when reflux is more under control. We’ll also keep searching to see if anything additional is causing this but who knows.

Any thoughts? On meds? Tests? Results? Treatment? or such… always welcome ideas. We’re hanging in there. Scary to be on the edge but we’re ok. Ians looking good and I have a feeling it’ll all work itself out.

Tracy (Ian’s Mom 9-26-05) Elecare, simply thick, prilosec, erythomycin, carfate (that list got longer!)