Monday, November 18, 2013

I can't believe I haven't posted since Halloween!

I have other things to be doing right now but I need to get this out in world.

So much has happened and so little has happened since my last post. Matt now has oxygen in the house but it isn't fixing the problem.  The pulm Matt sees is now off the case.  I am glad that Matt's pediatrician agrees with me. I don't like disagreeing with doctors on my own.

When we saw the pulm he still saw Matt as a sleep patient, I told him our fear (the pedi's and mine) was that Matt was having hypoventilation issues.   He recommended a sleep study and left it at that.  He didn't do one lung function test or anything of the sort.  During the sleep study  I saw Matt's CO2 was high.  It was above 45 all night.  At one point the tech even came in to check the machine on himself to make sure it wasn't just the machine.  When we went into review the sleep study the doctor wasn't concerned about anything.  His only recommendation was to get his tonsil taken out.

Matt usually desats int he AM hours after 6-7 am. (He can sleep much later and keep desating.) The sleep study was supposed to last until he woke up naturally.  At 6 am he had a nightmare, the tech asked if we were ready to leave.  At first I said no, then I saw the time and realized that Matt wouldn't be desatting once he was as awake as he was.   So we packed up and left in hopes that whatever we got was good enough to give us answers.  From the research I had done it should have been enough to give tell us Matt is in fact having issues with hyporventilation.

Needless to say Matthew is not getting his tonsils removed and he is getting a new pulm.  We will either go up to Houston to see the one who works with mito docs up there or the one here that a friend recommends.
In other news, we pulled Matt out of school, he was missing so much because of his constant sicknesses.  Also with the regressing (breathing issues and language issues) it felt like the best decision.  We have also had to go  with daily naps.

I pulled Matt out just in time, last week Matt came down with chicken pox!  So the last 8 days have been spent mainly in isolation.  With that being said... Matt's chicken pox should be coming to a close, but he is coming down with something else.  He has a slight fever and a cough!  Lovely- the few germs he has been exposed to have found a way to make him sick!

Now time for some honest truths I need to get out there but don't want to admit.

- I don't want to homeschool!  I know it is the best decision for Matthew's health, I don't know if it is the best decision for me or for his social needs.  He is so social.

-I hate having to go back to naps, it feels like such a slap in the face.  I know that we need to make a  lot of changes...  I just don't really want to.  I love having a go lifestyle but I know that for Matt's health a stay life style is much better.  (we both are so social and love to go, go, go, this is hard for both of us)

-I am so worried and scared about what the future holds.  Last year gtube, this year oxygen, cpap. bipap or whatever will have to be done.  I just don't know what is next... it feels like we are going from borderline healthy kid, to I don't want to think about it.

-I miss sleep.  I actually didn't put Matt's pulse ox on the other night because I just wanted some sleep.  I felt so guilty.  I never thought we would go a night with out it.