Friday, December 02, 2005


Ok, I am told by my doctors not to get TOO excited, but I can't help it! I AM JUMPING FOR JOY!!! (The staff got quite a kick out of me yesterday during rounds, because I simply could not contain my excitement!!!) And actually I just had to leave his room because he was sleeping so peacefully and I just wanted to pick him and smother him with love and kisses! So I thought I would use this time to post the good news and let him get his much needed beauty rest. :)

Max is doing AMAZING!!! He is looking better than ever...truly a miracle!!! AND...drum roll please...he might, just might, be home in time for Christmas!!! YES!!! You read right...possibly home for Christmas. It will be tight, but it might just happen! CAN YOU BELIEVE IT? My baby is coming home soon! Holy moly!!!! Can you sense our excitement???

Everything isn't perfect by any means...but he has made tremendous progress. Most importantly, he is officially off of CPAP. That happened yesterday at noon and so far so good. There are a "few kinks" with his lungs that we still have to work out and if they get worse then we might be here for several more months, but I just don't think that will happen. Mommy's intuition is that Max is on the road to recovery and on the road to Bellingham sooner than later!!! YAY!

I don't want to dismiss the few kinks, because they could be somewhat serious. First, a portion of his right lung has collapsed because of his shallow breathing. They did another xray this morning to determine if that is stable or worsening. We should know shortly. Additionally he continues to breathe fast but that has slightly improved so we are pleased with the gradual progress. However, we have to make sure it doesn't worsen as he is off of support for longer periods of time. His oxygen needs have increased slightly, so we are not sure about that. However, he will need that for quite some time due to the pulmonary hypertension issue.

Another issue is that he continues to retain a high level of fluids...despite the diuretics. This will continue to be an issue, but it does present some problems. We are watching this very closely because most importantly, it impacts his breathing.

Lastly, we must determine that he can grow without the ventilator. THIS IS THE BIGGEE. However, they don't believe they need to keep him in the hospital to watch this. He could come home and if he doesn't grow adequately, then we will return to the hospital for breathing support (tracheostomy). This would allow his lungs to not work as hard.

And of course he needs to continue keeping his O2 up and his CO2 down...which he is doing well with now.

My pulmonologist warned me yesterday though again...Max is a THIN ICE kid and if the ice starts to crack, you will have little time before you fall in and drown. Pretty scary to think about. So he and the other docs have reminded me time and time again, you will need to be on Maxwell 24/7 oobserving and detailing every tiny little change to ensure all is well. What a full time job...lots of reward but LOTS of responsibility with absolutely no breaks. But I will do whatever is necessary for Max to come home and start living a "normal" life (well between weekly doctors visits, clinics, daily therapy appointments, the works!) :)

So that is the amazingly wonderful news. We still have many "kinks" to work out...but I am feeling sooooo confident about Maxwell right now. I had this same positive feeling before heart surgery and I was right, so hopefully my intuition is right on!

This weekend we will probably graduate from the ICU and head back to the floor (YIPPEE!!!) and then we will see how he does in the upcoming weeks. HOW EXCITING IS THIS??????????? :)


kate said...

I am so excited for both of you! How great would that be for Max to spend his first Christmas out of the hospital!! And what a wonderful Christmas present to you! I wish I could be there to help out when he does come home to you. I pray that he continues to do well, and that the "kinks" don't cause too many more problems. What a miracle baby he is!

Love, Kate :)

rebecca said...

What GREAT news. I am jumping up and down for you (think Tom Cruise on Oprah's couch!). I pray Santa brings you the best gift ever - Maxwell home! My fingers are crossed that those pesky kinks work their way out. I am sooooooooooo happy for you guys. Keep it up Max!


Steph said...

Oh Amy...I'm soooo happy for you and Max! Just the mere thought of you snuggling Max at home on Christmas morning is simply wonderful. I know you have some hurdles before then, but Mommy's intuition is in full force! And just think of all the hurdles Max has conquered so far...among so many other things, he's done so well post-heart surgery, and is off of CPAP. He wants to come home for Christmas!

xoxo Steph

Chris said...

Excellent news!!!!! We'll keep saying our prayers that he gets well and gets home soon!


Renee said...

This is the best news ever Amy! What a wonderful Christmas it will be this year. We will continue to keep Maxwell in our prayers for a speedy arrival home and a healthy lung turn around. Have a great weekend snuggling with your boy!

Anara said...

WOW!!!!! I can't tell you how happy I am that Max will be home for Christmas, what a perfect way to start the new year. The doctor's have to be amazed with the great progress that Max is making. Always go with your Mother's intuition, it will never let you down. Max will work out the kinks just as he has worked out the other issues. You have such a special little guy there.
Give Max big hugs and kisses for me. I love you two!!!! XOXOXO

Elke said...

I am so excited to hear all of your amazing news! Can't wait to have you around Treasury more :)

I will be praying God continues to Heal you...and you will be able to come home for Christmas! (this would be the best Christmas present you could give your mama...she deserves it! :)

Lots of Love & Prayer...

Ruthie said...

Wonderful! Loving this news! Hope that there just continues to be good news and those kinks aren't an issue. My guess is that once you get him home he will thrive! Take care!