Well Nora once again blew off the fever and recovered like a champ! 🙂
This time it looks like it was viral and not an infection which is good news. It has been 48 hours and still nothing has grown in the cultures and she has not had a fever for well over 24 hours now so we got the quickest exit ever from the PICU ever and are back home.
During the hospital stay though her button she got in replacement of her G-tube a couple weeks ago seems to have been defective and started leaking very bad. We spoke with Dr. Crooms and decided to remove it and replace it with a G-tube again until we could get a new button. In hindsight though I dont think we should of done it as it was very painful for her to have it removed and her stomach now thinks the G-tube is food and was sucking the tube into her small intestine which was causing her to either throw up everything she ate or have it shoot out from around the tube on her belly. For those of you parents our there upset about your baby throwing up or pooping on you try having their food erupt out of a hole in their stomach with some extra bile and stomach acid added in just for fun. Funny thinking back to before Nora was born and how the only thing I was dreading was the poopy diapers and throwing up that was coming my way and how now a thing like a mix of bile and formula exploding from Nora’s stomach doesn’t even faze me. Anyways the good thing about this is it shows how well her stomach is working. We had to try several things to get the tube to stop being sucked into her stomach further and down into her intestine. We ended up cutting a baby bottle nipple and inserting the tube into it and using the nipple as an anchor on her skin to keep the tube from being sucked in. Pretty amazing considering it has not been very long since she had the g-tube all the time. Hopefully the replacement button will be here Monday so we can switch things out.
All in all though Nora is doing great and back to her normal sweet an happy self, just a little tired from the long couple days. Its nice to be home 🙂
Wow, what an experience! I am glad the 3 of you are back home tgether and Nora is fever free again! Try to get some rest!
We love you! xoxo
Hi
My name is Tonya, I have granddaughter name Tajah Romine, who was born May 13, 2007. She was diagnosis with Necrotic Entercolitis one week after her birth. She’s had multiple resections to her intestines, leaving only 7cm of intestines left. She is currently in the hospital in Louisville KY and has been since birth. She has an ostomy, G-tube and a central line for her TPN. She was due discharge home last week, but developed a fever and became septic from her central line (replaced 8/9). She was treated with three different antibiotics, and is currently waiting for negative blood cultures; hoping to have home with me by Aug 29, 2007. Tajah is doing great, although the fellow resident stated to me in June that she has no chance of surviving with such little bowels. I still have HOPE. She was 3lbs 12oz at birth, but is now at 7lbs 3oz. Tajah is taken 5cc of full strenght formula twice a day, along with her G-tube feeds. GI want to increase feeds but her surgical says no for now.
I hope my brief story encourge you to never give up. I have Great Hope! for baby Nora also.