It started off with a BANG!!!!

Bright and early at 6am I was awoke by a bunch of voices in the room.  I opened the curtain to find a bunch of people hovering over Avery (never a good sign).  Apparently labs were done and they showed that Avery was very acidotic (meaning he was working too hard to breath and he was not blowing out enough CO2 making him very sleepy).  He was on his home bipap settings and apparently they were too low for him.  Basically he spent his day getting the life sucked out of him, literally.  Poor kid has so much secretions that I feel like he must have lost a couple of pounds with all that was suctioned out today.  He was able to come off the bipap for a total of 3 hrs. today which was a bit better than the last extubation. 

Rick and I are just emotionally spent.  We are trying our hardest to not rush to doing a trach.  It's not that we wont do it.  Obviously if he needs it then he needs it.  This is a huge decision and has alot of effect on our family lives.  Where he is sick with pneumonia, we don't want to jump to our decision and do something that will be permanent for him.  There are alot of opinions out there but ultimately it is ours to live with whether we do it or not.  We want to out Avery's needs before our own but it is not easy when you know it limits him even more.  We have a hard time keeping Isaiah from pulling his tubes now so I cannot even imagine adding another thing for Isaiah to get at.  It's also upsetting to think that if Avery does get a trach that I will have to separate the boys so Isaiah cannot get at him and also the dog (is that quality of life?).  Then thinking of traveling with Avery is another thing.  It is just alot on our family.  We may not have a choice if Avery decides otherwise.

We keep asking ourselves, how did we get here?  This was a preventable situation that has spiraled out of control.  I have so much anger over it all.  I am mad that we have to make these big decisions now where Avery was doing great before all this.  I am sad that now he will not be able to go to school in the fall.  I am upset that I only get to see my other kids on the weekend.  I am stressed about finances b/c no matter what, life goes on and we still have to pay the bills which means I still have to work through all of this.  I am heartbroken that I have not been able to do anything with Ness during her summer vacation.  Poor Isaiah probably forgot who I am.  It's just not fair and it sucks like crazy for our whole family.  There is no end in site and we have so much work to do to get Avery home.    It just been hard on Rick and I but at least we are getting through it together.   As you can see it's been a hard day and I cannot even imagine how hard it has been for Avery.  Smiles were very few and far between today :(