Saturday, October 26, 2013

A very busy and exciting week...

and of course Matt is getting sick again!!!!
Last night was a rough night!  His oxygen was staying up for the first two hours of sleep, then he started desatting, when I woke up Matt I heard him gasp for air.  It was kind of a weird moment to hear him breath so very heavily.  I went ahead and turned on his oxygen but even with oxygen his O2 level was only staying at 94.  That was about 10:30 at about 5am he started desatting again... and it didn't stop!  I spent the next two hours close by while keeping him on the verge of awake to get him to keep breathing.  At one point his O2 level was between 90-92 for 12 minutes!
Finally I got him a little more stable and laid back down, I also turned his monitor down to 90.  By 8 he was desatting again, we had a few rounds of the alarm waking him up enough to start breathing but it ended with him going down to 80 with me trying to get him up.  It took about 3 minutes of me moving him around, lights on, talking to him to get him to wake up enough to start breathing better.  At this point I was done with the night and ready for sleep to be over.
His levels stayed pretty low till he finally woke up.  we need a sleep study soon!  I am planning on calling monday and pushing for a faster sleep study at a different place.  The sleep study place he usually goes to wakes him up at 5 am, his biggest problems are after that.  He needs a sleep study that last until he wakes up.
When he woke up his nose is congested and he has a slight fever... UGH!  We have such a fun week planned!

Tonight is my husbands churches trunk or treat.
Sunday - Fall Festival
Monday - Bible Study
Tuesday - Pumpkin Carving
Wednesday - ZooBoo
Thursday - Halloween
Friday - Mitocamp

I am really hoping today is a fluke and we can still have an awesome halloween week!

Wednesday, October 23, 2013

Sick..... AGAIN!!!!!

Matt has been really tired for the last two weeks so I didn't think much about it this morning when Matt didn't want to wake up.  I also didn't think much about it when Matt's first few steps out of bed led to a fall.  We were running really late this morning because he didn't want to wake up so I didn't take the normal time to make sure he was well.  In the early waking hours it is hard to tell sick vs tired.  
A few hours into school I get a call that he asked to have his temperature taken and he had a fever.  My heart sunk... he has been sick so much!  I don't want him sick again!  
When I got him home he was miserable.  He just fell asleep, but I took him to the doctor.   We found out it isn't strep and it isn't the flu.  What it is, is another mystery virus.  FUN times!  

Monday, October 21, 2013


The next step of this journey we are on is probably going to include oxygen.  The last time Matt was sick when we would check his pulse / oxygen levels it would be down.  As I sit here right now his oxygen level is 94.  The lowest they want it is 92.  At night and when Matt is sick we frequent  that number.  His levels have gone down to 85 many times.

At first I wasn't ready for oxygen, but now I am tired of seeing him desat and not being able to fix it. When he starts desating the alarm keeps going off and wakes everyone up, he starts breathing better for a while and then he desats again.  It makes for long nights and a very tired Matthew in the morning.

I started this post last night, I called  his pulm and he told me to take Matt into the ER, with all the issues he wanted to get a work up on Matt.  Last night they did an X-Ray, EKG, and some lab work then we were sent home with instructions to miss school today and see his pedi.  We went to his pedi's office this morning and he decided to go ahead and start Matt on supplemental oxygen as needed.

This is all so  new, but I guess it is where we are heading.