Oh what a day we have had here at duPont Children's Hospital. It's been a rough one. Actually it started out last night around eight when the nurse came in and said that the resident flagged her down and told her that Gavin was very sick and needed frequent vitals. She said that his cultures from the 16th are now growing out bacteria. I never heard from that resident until a little after midnight. That means I had a knot in my stomach for 4 hour waiting to see what was going on.
I felt better a little better this morning, as Gavin is still clinically looking good, until I later found out tat he is growing two bugs in his femoral line -- the same bugs that were in his central line before it was pulled. We switched up some of his antibiotics to ensure that he has better coverage, but the plain truth is that this is very scary.
We all feel that Gavin bowel removal was a huge success. In the past four and a half months Gavin has had 3 infections, 4 if you count this new fem line. That is a huge improvement from earlier this year where Gavin was dealing with at least two infections per month. The other huge improvement is that Gavin has been fungus free ever since February -- that's very cool. With all that said it still stinks. We were all hoping for more -- even though we all know the reality. So now we are all thinking about the "what's next" question. I'm not sure we know yet -- though I know that everyone is working hard to find options.
Anyway -- what made the day really bad is that little Madison really struggled with our day. She listens to the conversations going on in the room and then is forced to deal with the scary things she hears. I'm learning that it's probably time to start leaving the room -- which is difficult. I was just on edge today as I was so tired and just couldn't find the energy to entertain both kids, which made for a day filled with Mommie vs. Madi battles.
We did end the afternoon with some alone time out side sharing a brownie and taking is some fresh air -- trying to find peace. This little girl is amazing. I pray everyday that Adam and I would have wisdom on how to help her cope and find her own sense of self during these long hospital stays.
She is one tough cookie.