After writing this to Gayla (Sugar Land friend from way back, and a nurse) I thought I might just send it to a few more of you who might be interested in some medical details...
Kaylee experienced several rounds (15-45 minutes each) of extreme pain today. She is given Nubain to help with pain, but it's allowed every 8 hours and helps for only 3-4 hours. The new meds should begin providing pain relief within a couple of days, and she's also getting biofeedback training to give her some tools to cope with the pain.
I think today's diagnosis (after 6 weeks, with 3 1/2 of them in the hospital) is "Visceral Eosinophilia," with the SMA Syndrome secondary to that. Kaylee is currently on IV nutrition and nasal-jejunum feeding tube with Pediasure @ 50ml/hr. The new treatment is Singulair, Zantac, & Benedryl, while continuing Elavil a bit longer.
We've been told that it's not unreasonable to expect her to be hospitalized for 2-3 more weeks, then go home with the feeding tube - again. Weight gain should eventually expand/reopen the angle of the abdominal artery & the superior mesenteric artery enough that the duodenum will allow food through and she can then have the feeding tube removed. (I can only imagine how much fun that transition will be, after 2+ months of not eating!)
Depressing as it feels to write all that out, we were pleased with the doctor who came in on her case this morning, and hope that his fresh outlook is providing the right answers. David has managed to pull strings through a church friend who is administrator of another hospital in KC to get the attention of the head of Children's Mercy's GI department. That seems to be getting us better communication, at the least, and hopefully a more effective treatment plan!
I think today's diagnosis (after 6 weeks, with 3 1/2 of them in the hospital) is "Visceral Eosinophilia," with the SMA Syndrome secondary to that. Kaylee is currently on IV nutrition and nasal-jejunum feeding tube with Pediasure @ 50ml/hr. The new treatment is Singulair, Zantac, & Benedryl, while continuing Elavil a bit longer.
We've been told that it's not unreasonable to expect her to be hospitalized for 2-3 more weeks, then go home with the feeding tube - again. Weight gain should eventually expand/reopen the angle of the abdominal artery & the superior mesenteric artery enough that the duodenum will allow food through and she can then have the feeding tube removed. (I can only imagine how much fun that transition will be, after 2+ months of not eating!)
Depressing as it feels to write all that out, we were pleased with the doctor who came in on her case this morning, and hope that his fresh outlook is providing the right answers. David has managed to pull strings through a church friend who is administrator of another hospital in KC to get the attention of the head of Children's Mercy's GI department. That seems to be getting us better communication, at the least, and hopefully a more effective treatment plan!
After working in a NICU, I cannot imagine the overwhelming emotions that take over when it comes to Pediatrics...Wyatt and I have been praying for your entire family along with special prayers for Kaylee. He is our Jehovah Raffa! " In all these things we are more than conquerors through Him who loved us!"
ReplyDelete- Romans 8:37