"Days in OUR life on 9 East"

Compiled....Updates for 6/23-6/26

Avery has been de-satting again .....BP have been low,considering his baseline is....well ...NOT low! They were saying it was because of dehydration..... although I'm not convinced!His HR has been Low on and off...it is very likely that Avery has Autonomic Dysfunction. He went back on O2 today! Avery's volume of his feeds were put up to 40 mls per hour ...the concentration has also been up to full strength....he has had a very hard time with this increase over these few days...many episodes of gaging/coughing/some vomiting....ALOT of upper airway secretions & congestion....along with increased drooling.....Over these days his vitals have been up and down ...oxygen on and off.. I have put him in his seating system a few times ,but he has not tolerated it so much,he has just been so uncomfortable.... I was actually pleased that he was SO OUT of sorts when 2 GI main attending's (doctors)came in to see him in this condition...of course you don't ever wish your child discomfort,but if it has to happen it's helpful if the doctors can observe it first hand....I have much respect for both of these physicians and believe that they are pretty straight forward with me(just as I like)and they look at the here and now and also what the going forward plan might look like. We started Avery on Tylenol every 4 hours for his discomfort (this is only a temporary fix) ....while we decide about the dosages for a new medication....that will address motility issues ...we need to get Neurology clearance for this mediation! Avery's seizures have been pretty unchanged...even with any adjustments we have made. His low grade temps ....are the same...as mention before,probably Autonomic Dysfunction issues!

On the therapy front.....PT ...Speech Communication...and Music Therapy have all been taking place while we have been here(per my request)...What great fun we have had with some of the communication devices!!!! Hey might as well make the most of our time here:)

And to think they thought we were to go home on Friday the 26^th......well the obviously didn't happen as he has not progressed to the point anyone would feel comfortable to have him at home.....
Devynn is still here every day...she loves coming in and all the staff love her!
We are gearing up for a BIG event on the 27^th....OUR BOY is “1”...WOW...Praise God...for whom ALL our blessings flow!
I am looking forward to having all my kids here for Avery's Birthday!!!
Devynn and I had a blast decorating as you will see in coming posts!!!

Prior to Avery's BIG event...We have had a few visitors and have enjoyed each of them.......

“My righteous one will live by Faith—Hebrews 10:38”