October 15, 2010

Woah, Nelly!!!

Slow down, please!
Throughout this journey, the Doctors and Nurses have repeatedly told us that Andrew is in charge.  Well, he certainly is!  He gave us a clear sign the past few days that we need to put on the brakes and slow things down a bit for him.  Unfortunately, he had a bunch of spells (desats/bradys) beginning on Wed and continuing yesterday.  As always, these are so scary to see, and J and I were there for several of them.

What is so frustrating, is that we don't know exactly why he is having them.  And, since they've changed so many things since he made the big move to room 200, it could be many things.  J and I think they may have pushed him too fast to bottle feed.  He was exerting a lot of effort (evident by his high respiration rate) and we think it took a lot out of him.  Add in the lower flow of his oxygen, daily immunization shots (some days 2), and his normal reflux issues, and it is not surprising that he took a few steps back.  The good news is that there is no evidence of infection or other issues. 

Another frustration of the new room is that he has a bunch of new doctors, who don't really know him or his background.  He's had new and different nurses each day who also don't know him yet.  So even though J and I are there as much as we can, he's not getting a lot of continuity of care.  I tried to meet with his doctor yesterday, who apparently left for the day early, so we're also not getting a lot of communication directly from the doc who writes the orders.  Hopefully today I can meet with him and get some answers.

Anyway, for now things have just stalled a bit. They have stopped bottle feeding him, and he's back to getting his food through the tube over 2 hours. What doesn't help is that since he is now used to getting fed every 3 hours by mouth, the boy is hungry at feeding time! And, since he's getting the feed so slowly, he's a bit cranky (and shows it) each time it gets close. They've also moved his flow back up to .1, and when he's not having spells he's satting just great. The good news, is that his respiration rate has gone back down with all these changes, so he definitely needed a break. We'll see what today brings, and if we can get this boy moving forward again.

PS - he's been sleeping a lot the past few days, and is just so dang cute with his different poses!  He sure likes those hands up by his face.  Enjoy the pictures, and keep the good thoughts coming his way!

The Thinker

Touchdown!


The mummy

5 comments:

Beth said...

Aww! Looks like the little man is worn out. Lots of love and good thoughts coming your way.

Jenn Ukwa said...

Always praying for you all and we know the Lord is with each of you every step of this journey. Keep up the great work Andrew! You're so adorable!

The Peri Family said...

5 sets of happy thoughts coming your way! We can't wait for the day when we can spoil all of you at your house w\dinner and some presents! Every best wish that your little cutie is moving toward the door of the hospital to take that first ride home very soon...
Love, The Peri Posse
PS: Maddie has Andrew as her screen saver on her phone w/the caption "I LOVE BABY ANDREW!!!!" - can't wait to spoil him!!!!

Libby said...

The "mummy" with his mommy is my favorite! :) Lots of love and smiles to all the Boydens!

kathy said...

We are all so happy for all of you. Although our journey to a baby in the cradle in the house were different...those last days of hoping, worrying and waiting are very similiar. I can only imagine your worries,yet we understand how exciting this time is. We are thrilled for you. Juli still isn't sure about the boy thing but she is excited to someday soon meet the baby Andrew she is praying for nightly. Prayers and good energy to you.
The Redmon's