Weary and Ready to Be Home

I was SO hoping that I would be reporting that we were home finally.  But, alas, we are not home.  Still at the hospital.  It's Wednesday night.  We are wrapping up the 16th day in the hospital.

Clinically speaking, Peyton is ready to go home, so that's great.  Now, that said, she is having some issues holding her oxygen level up where it should be, so that's a concern.  This may be her new normal though.  On the other side of things, the doctors are having to meet as a team (which they seem to regularly), but they are having to coordinate with other specialists in-house as well as talking with the geneticist in Boston on certain issues. 

I did not speak to the doctor myself this evening, but the nurse said that they want to be sure I know CPR and that we have everything set up to be at home.  There needs to be a plan in place for how to deal with these "apnea events" (just a polite way to say that she stops breathing).  I kind of equate them to having seizures.  No...I'm not saying she's HAVING seizures.  I'm drawing a comparison here.  When she had the first major seizures, we went by ambulance to the ER.  When she stopped breathing at home the first time (a minute or so), we went by ambulance to the ER.  She has had a couple events in the hospital, so we were where we needed to be.  When she continued to have seizures at home, we had to monitor how long they were and what her mental status was after the seizure ended.  Only once have we had to use the emergency meds for seizures that are too long.  So I'm wondering - when she stops breathing at home, at what point do we now call 911?  If she comes around quickly do we just assess her and if she's "normal", stay home?  Or do we have to book it to the ER every time?  How are we supposed to handle these events?  And like seizures, there's no telling when (or even IF) there will be another event.  Do we need an apnea monitor at home now?  We have a pulse ox monitor, but it doesn't measure her respiration rate.  Do we need to keep her on the pulse ox all the time now?  These are just some of the questions we have that we need answers to before we leave here.

So, as you can see, while we may be physically ready to be out of here, it isn't as simple as that.

Say a few prayers please.  Mostly for her that she can get home, but also for me.  I'm pretty weary.  I'm hanging in because of the hope that we'll soon be home, but I had hoped it might be today and, while I totally appreciate where we are in the process right now, the fact that we did not get to leave did something to me.

And I just want to thank the people who have been so good to us.  I had some people from church come up to visit (separate visits) and a couple others as well.  I really appreciate their thoughtfulness - from the visit itself to the books, snacks and so on that they brought.  And to those who have helped and who have offered help in the outside world, I am so thankful for you as well!  I really truly appreciate it.  It all means more than you know.  I'm so grateful to you!