Okay, so first I want to apologize for the mistakes in yesterday's post. I was in a hurry trying to get the status info out and also doing the post via the iPad, where auto correct can be your enemy. Max was not incubated yesterday...he was intubated...we did not confuse him with a chicken egg or a preemie. Also, attempting this whole IPad blogging thing takes a bit more time and needless to say I have been working on this post all day.
Last night was not bad. Max was able to rest for most of the night. Now that he is intubated his numbers are much more stable. His fever did return and has been back for about the last 12 hours. They have him on two pretty broad spectrum antibiotics. They said sometimes fever can be associated with lung inflammation, but they are also running a viral panel to see if it is a virus causing the fever, which would unresponsive to antibiotics. They have also opted to do a bronchoscopy today. There is a lot of junk in the left lower lobe that the RT is unable to reach and the bonus is they will be able to take what they retrieve in for further cultures, so far nothing has grown bacteria out of the initial cultures. UPDATE: Bronchoscopy went well, they got a lot of stuff out and there is definitely inflammation in both lobes, but mostly in the left. He is sedated, but with the fever and the tube he has been uncomfortable. He is also very frustrated at only being able to respond with yes or no questions, so he is having to be extra patient with us as we try to discern what he wants. Here he is resting.

Thankfully, we have received no flak about Max's diet (which can be a sticking point with dietitians due to a lack of understanding) and the hospital is on board with keeping his feeds going, also a sticking point at times during the extubation process. Tomorrow he will get a temporary GJ (basically will run through his gtube site, but will be put directly to his intestines, bypassing the belly) tube run so that he does not have to go without nutrition during the extubation.
Our hope is to extubate on Thursday, but we want to make sure he is at the best point possible for nutrition and rest, so that he will have enough energy to breathe on his own, our SMA kiddos just do not have the reserves that a typical kid would have energy wise. With all that being said Max drives this profile and so often during his illness it is a one step forward two steps back situation. As much as I would like to give everyone, myself most of all a timeline (cause you know me I like a schedule), this is truly out of mine or Aaron's hands. Even upon extubation we can plan to be here a few more days, to make sure that he is able to sustain breathing on his own.
Father James was able to come by and do an anointing of the sick, which was a wonderful blessing. Max loves Fr. James and will probably be a bit bummed that he was zonked while he was here. Thanks to Kathy, our parish secretary, and Fr. James for getting this arranged so quickly after our phone call.
Also, thank you so much for all your offers of help. I promise we will let people know when we need something. My granny and Aunt Tammy came to Pensacola today and brought us all lunch and ran some errands for my mom. It was much appreciated! I hear they also got Max a toy pirate ship, which is the one thing he asked me for yesterday before things got wonky.
Couple of PICU stories...
During intubation Max lost his top front tooth, so on the upside that makes 2 out of 5 baby teeth that can go to the tooth fairy. They felt kind of bad about it, but honestly it is one less thing for us to worry about.
Also, at the risk of sounding superstitious late Sunday night the RT brought a bouquet of get well balloons to the room saying they were donated. Aaron really didn't think to much about it. The next morning we talked to the nurse and the balloons were from a child's room that had passed away the previous evening. So upon Max's intubation we had to change rooms to be closer to the nurses station given his now more critical status, well without even discussing it neither Aaron or I picked up the balloons. So while we we getting settled in the RT comes in holding said balloons and said, oh you forgot these. At the same time both Aaron and I turned around and said NO, DO NOT BRING THOSE IN THIS ROOM. I guess we were both thinking that they were bad omen balloons. Incidentally, after the child passed the night before all the beds in the PICU started alarming, even the empty ones in empty rooms....creepy.
Also, yesterday I spent the afternoon in the emergicare here at the hospital because I have strep throat. Awesome. Needless to say I wasn't feeling so hot. This is not what we wanted added to our plate. Thankful for antibiotics, I am feeling much better today.
So this is us, not really any better today, but definitely not worse. I will leave you with this today...this is the song that played the last two mornings on my way to the hospital, which wouldn't seem to weird but the times were differ, but not different enough for a complete playlist on the radio station. Anyway, this song really spoke to me for fairly obvious reasons.
www.youtube.com/watch?v=zulKcYItKIA