aggieswifey04
New member
Hey there!!
I need some help from you CF families that have possibly been thru this.
My daughter was in the hospital for the first 5 months of her life on a respirator and FTT (Failure to thrive) for the first few months. She had an Meconium Ileius and ileostomy repair along with a G-Tube. Ever since then, shes been puking her guts up. They tried different formulas. I ran out of Breastmilk, they put her on a similar formula but she didnt tolerate it. Shes on Neocate now and to me doesnt seem to tolerate it as well. Shes been on Neocate for sometime. However only vomits once in a great while and when she does its almost Go-Go Gaget Vomit! Shes been vomiting since day before yesterday and I started to get worried when she spiked a temp of 101.4 and realized she has been vomiting after each feeding. I called the doc and he said to lower her feeds (feeding pump) to 40ml/hr (overnight) starting with Pedialyte and then switching it to formula and going to 50ml/hr after an hour of no vomiting. Shes done great so far! But I have a feeling once we go back to her DAILY feeds at a rate of 110ml/hr shes going to vomit again!! Shes on Reglan and Prilosec and still is vomiting. What can I do? What should I do? I thought about asking to change her meds to Prevacid (but not sure if her age is recommended yet or if theyve already tried it on her during hospital stay). I also thought about asking to do a Nissan Fundo. But its just another surgery. Ugh. I just find it VERY difficult to see her vomiting EVERYDAY almost. The doc thinks she might have the bug thats going around but that doesnt account for those vomits prior to the 24 hr vomits thats been happening. Ya know?
I hate asking for help from the CF Team as we had a ROUGH time with one specific doc who just so happens to be the HEAD of the CF team. He wouldnt release us from the hospital till we could prove to him that we could take care of Kylie. Even though my husband did a room-in and we had been by her side for the whole hospital stay (other than staying at night since we do have a 3 yr old -- we did stay in town at the local Ronald McDonald House). I was highly annoyed. But thats a whole another story for a later date.
My question is: what should I do? Has this happened to you?
Bec
I need some help from you CF families that have possibly been thru this.
My daughter was in the hospital for the first 5 months of her life on a respirator and FTT (Failure to thrive) for the first few months. She had an Meconium Ileius and ileostomy repair along with a G-Tube. Ever since then, shes been puking her guts up. They tried different formulas. I ran out of Breastmilk, they put her on a similar formula but she didnt tolerate it. Shes on Neocate now and to me doesnt seem to tolerate it as well. Shes been on Neocate for sometime. However only vomits once in a great while and when she does its almost Go-Go Gaget Vomit! Shes been vomiting since day before yesterday and I started to get worried when she spiked a temp of 101.4 and realized she has been vomiting after each feeding. I called the doc and he said to lower her feeds (feeding pump) to 40ml/hr (overnight) starting with Pedialyte and then switching it to formula and going to 50ml/hr after an hour of no vomiting. Shes done great so far! But I have a feeling once we go back to her DAILY feeds at a rate of 110ml/hr shes going to vomit again!! Shes on Reglan and Prilosec and still is vomiting. What can I do? What should I do? I thought about asking to change her meds to Prevacid (but not sure if her age is recommended yet or if theyve already tried it on her during hospital stay). I also thought about asking to do a Nissan Fundo. But its just another surgery. Ugh. I just find it VERY difficult to see her vomiting EVERYDAY almost. The doc thinks she might have the bug thats going around but that doesnt account for those vomits prior to the 24 hr vomits thats been happening. Ya know?
I hate asking for help from the CF Team as we had a ROUGH time with one specific doc who just so happens to be the HEAD of the CF team. He wouldnt release us from the hospital till we could prove to him that we could take care of Kylie. Even though my husband did a room-in and we had been by her side for the whole hospital stay (other than staying at night since we do have a 3 yr old -- we did stay in town at the local Ronald McDonald House). I was highly annoyed. But thats a whole another story for a later date.
My question is: what should I do? Has this happened to you?
Bec