So the last time I did a full update was Tuesday night after surgery. Wednesday morning we had a visit from the surgical team and his incision looked good. It was still red and swollen which was to be expected but otherwise fine. He was still lethargic and had no want to do with taking any sips of a clear liquid. He basica;;y slept most of the morning until W and Elliot got there. I then took Elliot to go pick up my laptop charger at work and get us lunch while he stayed with Alvin. When I got back we had lunch and even though Alvin asked for a bite, when you actually offered him a drink he said no.
We found out that due to the large amount of antibiotics and fluids he was on that they were decreasing his appetite and keeping him pretty lethargic.
Then things got interesting. We met with a doctor from the infectious disease. They said nothing had started growing in the cultures but they just weren't sure it was even bacteria.So after some more questions I showed him the pictures of what it had looked like the days before we brought him into the clinic and then in the clinic when they started cleaning it off. He was actually pretty amazed that I took them and asked for them to be emailed to him so he could study what things looked like before they cleaned it out in the OR. Later that night the team from Children's as well as the doctor we spoke with from UW came back to go over things further. This is where things got interesting. They told us they now suspected that the infection was not viral but in fact fungal! They were going to talk to the neurosurgeon to get a better idea of what they saw in the operating room. The surgery team (yes now it is more than just his surgeon and her resident) stopped by later and discuss what they saw. They weren't convinced it was bacteria but said it was ultimately up to the infectious disease team to decide the final treatment plan for the antibiotics.
Luckily that night he slept well and on Thursday morning was starting to feel a little better. The nursing staff suggested turning down his IV and seeing if that would help him want to eat and drink a little. Well it certainly worked and before long he was eating jello and starting to drink very slowly. The surgeon even came in during rounds and said they could just disconnet the IV entirely since he hadn't thrown up again. The rest of the day he slowly started eating and drinking and driving us nuts as his energy returned.
Later that night he was feeling so good we even made a trip to the larger playroom to help release some of his energy. By the time we spent about an hour and a half there we also met with his infectious disease doctor and his surgeon one more time. His surgeon wants him to go home tomorrow and thinks his head looks really good. She does want the nursing staff or a nurse practicioner to give it a good saline wash just to get all the dried blood off and one last good cleaning. His infectious disease doctor believes that the infection was actually a combination of a fungal and bacterial infection. Luckily it was all superficial so just a course of oral antibiotics is probably all that we will have to do at home. Well that and a followup incision check in 2 weeks, but that was to be expected.
As long as the infectious disease stuff comes back fine we are out of here tomorrow and I'm not sure who is happier, us or Alvin!
In some ways its like starting all over. After 7 weeks we are going to be sent home with the same care instructions and he will have the same physical restrictions. While it is really frustrating at least we have it under control now. We now know that he has an issue with the super glue they use. He no longer has any hardware in his head and it will not be replaced. He is as back to normal as he was 7 weeks ago and now maybe we can avoid any more emergency trips to the hospital for at least a few more months!!
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