Crossroads

We are at a bit of a crossroads with Noah.  When you look at him, he "looks" better.  His vitals are decent, and he's awake and alert a few hours a day.   However, his urine cultures indicate that his bladder is very intensely infected with MRSA.

We still believe that this crisis was at least initially caused by the same virus that his siblings had.  His initial labs looked viral, and this would fit with the fact that he's starting to feel better.  Unfortunately, his newest labs look like the MRSA is trying to head into his bloodstream and make him very, very sick.  The improvement we're seeing could be one of two things:

1.  He could be recovering from the virus, we could have caught the MRSA in time, and the high-powered antibiotics we started are effectively beating back the MRSA.

2.  He could very well be sitting in the eye of the storm so to speak.  We could be in a little lull where the virus is abating and the MRSA hasn't yet had time to build up speed and make him terribly ill.

There is really no way to know, and nothing we can do except pray and be thankful that **right now** he's having some short, happy, alert times.  We switched to a very powerful antibiotic once we knew about the MRSA, and there is nothing else we can do medically at this point.

Right now the biggest changes in his labs are worsening liver numbers, worsening kidney numbers, worsening infection markers, and at least one dangerously low blood sugar (so now we are doing finger sticks).  His PT/PTT and platelets are better, he's less swollen, and most of the bleeding is improved.

We've been cautioned to keep in mind that he is just one bacterial surge away from being very gravely ill, and that even if he is on the mend, he's unlikely to return to his previous (poor) baseline.  We know he is in the end stages of his underlying mitochondrial disease, and we know that he could be terribly sick just minutes from now.  (It feels so odd to be writing that, as just a week ago I was blogging about the fact that he could be getting sick, and minutes later he was so very ill.)  We're choosing to try to walk a balanced path - giving thanks for how he feels right now this minute and just enjoying and soaking up every bit of it, but also being mindful to do some things that are important but easy to put off - handprints, memory making, etc.  We've also finalized most of his funeral plans as it will only be harder to make those choices once he has gone home.  Honestly, I feel pretty optimistic right now.  Whenever he starts feeling better, it's easy to be in denial about how quickly things can turn, but I think this is more than denial.  For the first time in a week, I feel hopeful.

I hope I've conveyed this all clearly enough.  It's not time to start celebrating but it's not time to start mourning yet either.  All I can ask from you is what you have all so freely given - your heartfelt prayers for our little guy that he would either fight his way back to us once more or that he would fly to Jesus without suffering.

I'll leave you with this.  Noah's favorite song is "You Never Let Go" as sung by the David Crowder Band.  (Actually, he really loves it as sung by our worship team, but the David Crowder Band version is the song he loves as opposed to a different song of the same title.)  He sings this so often when he is sick or scared, but until last night I've never caught him on tape.  Last night he was awake and resting for a little while and I managed to catch this before he went back to sleep.






Here is the "real" version by the David Crowder Band in case you haven't heard it.  It is so precious to us that the Lord would use this perfect song to minister to Noah.  As Jeff told someone today, Noah doesn't just sing this song, he **lives** it!






Blessings,
Kate