Day -4

Dr. Wagner and Elle getting to know each other better during his 2 weeks on service

Day -4 went pretty well.  She slept most of the day and had little smiles when awake.  She is not as strong but still no vomiting (knock on wood).  When Dr. Wagner said they sometimes don't throw up until a day or two of Cytoxan, I said that I didn't want her to throw up AT ALL.  She has EB, emesis is a bad thing.  In our clinic, we don't want our head and neck patients to throw up at all so I discussed different antiemetics with the Dr.  I guess it is more of a challenge with kids because a lot of the nausea meds used on adults aren't approved for pediatrics either because they haven't been tested or adverse events are associated.  So she has the three best choices on board and we are watching for signs of nausea.  Dr. Wagner also said that babies often do very well and sometimes experience no vomiting.  Elle usually lives on the side of the small percentages, so let's hope she is among the few who don't get sick.

Her body dressings went so fast and well tonight that we decided to do her arms and wash her neck and hair as well.  She slept through much of it and the dressings came off easily.  We even got her up in her little, special baby chair.  She smiled and drooled for 10 to 15 minutes then she looked tired so we put her on clean bedding and let her rest.

Still looking beautiful even if not feeling as good

Just a little bit ago though, she developed a fever of 100.9 axillary and was fussing, so the nurse is doing blood cultures and gave her Tylenol.   Technically that is for day -3, but I'm too tired to split hairs.  So good night and thanks as always for your warm interest, support, and prayers for Baby Elle.