The Domino Effect

Nora has had a rough week since our last post but she is finally feeling much better now. Even though the oral antibiotics were good for the rash they were not at all kind to her tummy. Late Thursday afternoon Nora started vomiting bile in large quantities. We called her doc and he said to not give her anymore antibiotics until he could see her the next morning. Nora’s rash had improved dramatically and was barely viable by Friday morning so the plan was to see how she did over the weekend and hope that she had gotten enough antibiotics in her system to kill the Scarletina. Her skin did great all weekend until Sunday night the rash started to reappear a bit. Her tummy on the other hand had a very rough weekend. Thankfully the vomiting did not continue after the antibiotics were stopped but then diarrhea set in and Nora was pooping 10-12 times a day on Friday, Saturday and Sunday. Her tummy was very upset and she was obviously very confused on why we weren’t feeding her and was not a bit happy about it. Every time she ate it would go straight through her and her stool was either clear or white. This made for a very worrisome weekend for Montana and I. There were times she was feeling so badly and screaming for so long that we almost took her to the hospital wondering if something more than a very upset tummy was the issue. We kept in touch with her doc over the weekend as well as Dr. Patterson, TMH NICU pediatrician, which gave us confidence to keep treating her at home on limited food and Pedialyte. Her stool is still pretty loose and frequent but is much improved and slowing down from the weekend and beginning of the week. On Monday we took Nora back to the doctor and he added some extra labs for Monday’s weekly blood draw to include a CBC, SED rate, ASO Titer and a blood culture and advised to keep Nora off antibiotics until some of the results came in as long as the rash stayed under control. The first results came in Tuesday morning and were very encouraging. The CBC and SED rate were both in the normal ranges which means that her body wasn’t showing signs of fighting infection. The ASO Titer came back yesterday with encouraging results as well, that is a test specifically for Strep bacteria and it was negative. As of this afternoon the blood culture had not grown anything. The rash flared up a bit on Monday but has pretty much completely faded away. Now we are dealing with Nora’s healing itchy skin which is causing a problem around her port. Where the rash was, which was pretty much all over her body, the skin is very dry and sloughing off so her tape dressing was not wanting to stick to her skin when her port needle was changed Monday afternoon. This stuff is sticky as all heck but the skin in that area was so funky the dressing started to peel around the edges immediately. Since the skin under the port dressing never gets to breath that compounds the uncomfortableness of it all so yesterday Nora started pulling and scratching at her port very aggressively. She is one strong little girl and we were having to pry her little fingers off of her port. Thank God for Fabrifoam, this breathable skin wrap, or Nora could have gotten herself in serious trouble. So now her chest is wrapped up so she can’t get to her port and dressing.

One good thing out of all this is that even though the antibiotics caused a lot of issues for Nora, since her skin responded to them so quickly that shows that her short gut is absorbing. Nora sure is one tough cookie and we are so glad she’s feeling better now. Even though things could have been much, much worse than a rash and diarrhea this last week has reiterated how easily Nora’s fragile system can get thrown off track and cause a series of issues and worries. Nora lost 8oz last week but she’s on the mend now and we’re focusing on keeping her protected and getting back to Super Nora strength. 🙂