Wednesday, November 30, 2005


After MUCH begging, the doctors finally gave in to my requests and we gave Max a trial off of CPAP for a few hours. AND sure enough, he proved me right...he did well! I held him and it was so wonderful to not have any barriers (well besides the million wires, IVs, oxygen, etc.!!!) and be able to just smother him with love. Such a joyous time! Then when the trial was over (we just wanted to test him briefly), he had to have the CPAP mask and hat on again...and he was not happy at all. (I'll try and post some photos soon...quite comical get up!) Since he appears more agitated with CPAP, they are hoping to get him off sooner than later. Soooo...there will another trial in the middle of the night and if he does ok and if his lung xray looks the same, they are going to take off CPAP. Max will be MUCH happier! I am sooooooooooooooooooooooooooooooo excited!!!! :)

On another issue, Max had an echocardiogram done on his heart today to determine the success of the surgery. All is well...all the patches and dilations are working as they should. However, the echo did show that his pulmonary hypertension (due to his heart condition and chronic lung disease) is definitely still an issue and he will require supplementary oxygen for quite some time. We already knew that anyway, so not much of a surprise. As far as the bradycardia episodes a few days ago, the EKG showed some irregularity in rhythm but no particular reason why. It hasn't happened since those two days, so hopefully it was simply a side effect of one of the medications.

I am also VERY excited for tomorrow for another reason...the audiologist is coming by to work with me and Max on his hearing aides! I have been bothering the heck out of that department and the ear molds are finally in and we are officially getting started. I am thrilled and just hoping this makes a difference for Mr. Max! Hopefully he doesn't think, "Yikes, Mom sure talks a lot...'Yea yea you love me, you adore me, I'm so handsome...yea yea.' Maybe I don't want hearing aides after all!!!" He better not! Anyway, it should be a crazy and hopefully very successful day!


Dylan (and Kristy) said...

Amy and Max-

Congrats on the trial off of the CPAP (or as I lovingly called it..the "nose-hose-torturing-device"). I'm glad that it went well even if it was only for a little while.

Dylan and I will be down next week for an appointment. Please let me know if you need anything. I know you are probably getting plenty of offers but feel free to take advantage if you need anything.

You two are certainly in our prayers.

Kristy, Ray, and Dylan

Anara said...

How wonderful!!!!! He just amazes the doctor's at every turn.. I am excited to see new pictures of our handsome little guy. I am praying for good results with the ear doctor tomorrow. Tell Maxwell to keep up the great work, he will be home with Mommy very soon.
I love you two, big hugs and kisses to Max for me. XOXOXO
Love, Anara

MarkCoyle said...

This is terrific news Amy! Congratulations. I have been praying so hard for Maxwell for a week to be exabated. This is wonderful. Send pictures!!!

ALL of us, I am sure, look up to you in awe for how strong you are for Maxwell. It's NO wonder he is coming along. He has SuperMommy there with him!!!!


Steph said...

Go Max Go!

Awesome progress, Amy. Great work begging those docs to give Max a trial off of CPAP. Mommy knows best!

Good luck tomorrow with the audiologist. Thinking of you guys.

xoxo Steph