Wednesday, December 31, 2008

PICU Day 13

Thank you all for "storming the heavens" for our Noah. Someone was listening...

Noah continually amazes us with his resilence, despite his frail, malnourished state. Everything about the surgery and post-op has gone so well. He was extubated this morning and went straight back to the CPAP with absolutely no difficulties. He even spent a short while off the CPAP this afternoon, sat up in bed, watched TV...shocking those who were just discussing end of life plans with us yesterday. Yep...that's our Noah. Another miracle to be where we are today.



The past couple of days Noah was having sinus arrythmias and bradycardias (his heart rate would drop in half and his blood pressure would sky rocket). Yesterday he had an ECHO and EKG done to assess heart function and everything looks ok. Today this too, seems to have stopped, and he has had no further episodes...no one has an explanation for what was causing them, but just something that we will continue to watch.

So where do we go from here??


Everyone is only thinking in short term plans right now...how to get Noah out of PICU and back on the ward...one step closer to home. There are too many unknowns to plan much further and many things need to be discussed and sorted out. Right now we have this precious line for much needed nutrition and blood products, and yet, we know that it was these precious lines that have caused so many complications, almost taking Noah's life in the past. And we also know that short of very extreme measures, this is the last line he will get. So I can only hope and pray that we have made the best decision we could have, given the alternatives.

The security of the line does give us the ability to focus on the other issues holding him here in PICU. The first plan of action is to get him off the CPAP...he will continue to have short trials throughout the day, until he can be completely weaned off. Still needing ventolin masks, but those too are slowly being weaned. And secondly, the bleeding has to be under control...he has had no bleeding the past 2 days, so we will try him off the Pentoprazole infusion again tomorrow and see how he does. The rest of the issues can be managed and sorted out on the ward.

Feels as if we have been here 13 weeks, rather than 13 days, but starting the new year with a renewed hope.



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21 comments:

Carol said...

Through the tears in my eyes, all I can say is praise God. Noah will continue to be in our constant prayers-may he show improvements every day.

Carol ( aka oklamomof4boys)

teresajoy said...

I hope Noah continues to improve!!!! So, what was he watching on TV??

Anonymous said...

Oh My Goodness! What a wonderful New Years gift :)
I am so very, very happy to hear about this turn for the better and may it continue throughout this coming year!
A Happy New Year to you all
Linda

Mir said...

HOORAY, NOAH!!! Praise the Lord! I hope you all have a wonderful, relaxing new year!

Anonymous said...

Praise be to the Lord, the Maker of heaven and earth. What an absolute miracle. We won't stop praying. mom

Anonymous said...

Praise God. That's awesome news. May God continue to bless you all!

Happy New Year!!

~Rissa and family

Christie Tuttosi said...

Happy New Year all of you!

kimmylaj said...

i am so happy that noah is doing better, many more prayers for continued healing, happiness, and health this new year

Verna said...

Praying that you can see all the Lord's miracles even through the storms...they are there.

HeatherSue said...

I am crying with joy that Noah got his line!

I am continuing to pray for Noah, and your entire family. He has touched so many hearts.

Maroo said...

Praise the Lord! How awesome.

We are still praying.

I am also praying for rest and peace for you, Nicole. And for the rest of your family. I know this has been a long 2 weeks. Hopefully you can get some rest, too.

Nichole said...

Hi Mom

did you read the email we sent you?

I might keep the blanket I was going to make for mattia. It is so soft.I made it all by myself.


It is a miracal that Noah is sitting up in his crib and that he might go back to the ward.

I love you mommy!

guess what I sleped till
8:20!!

I went to a party and played with a 19 month old little girl.

It is the first day of 2009
HAPPY NEW YEAR!!!!!!!!!!!!

bye!
Kailyn

Anonymous said...

Doing the Happy Dance :) :)
Hope he continues with leaps and bounds throughout the day :)

Mandy

Anonymous said...

Praise God!! Rejoicing with you, and continuing to pray for more good news.

Heather

Kim said...

I was so excited to be able to see Noah yesterday...even though he glared at me...that was wonderful too! I'm praying that Noah would continue to gain strength. May you be able to rest a little easier as well. Praising a great God!

Alison said...

Continuing to pray for miracles and praising him for the miracles already given. We pray only the best for Noah for 2009

www.andrewsbravejourney.blogspot.com

The Keowns said...

wow, what a miracle.

Pete and Brenda said...

Wow, Nicole, your smile is priceless! And rightfully so! Praise God for this miracle! Praying for many more! happy New Year!

LuvGoing2Disney7 said...

That is the best news. The picture brought tears to my eyes. We're praying for Noah, what a miracle he is

Jamie said...

Yay for some pictures :) Noah looks so small and frail, but it's good to see him with open alert eyes.
Praying that this line lasts a LONG time...

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