Thank you for the flood of encouragement and love after my last post... it helped restore a little strength and hope in my spirit after a really hard and long day.
Our computer issues continue which leads to my infrequent posts... the battery on our laptop will not charge using our power adaptor so we have to use it sparingly throughout the day. Josh snagged an appointment at the Apple Store on Thursday to see if they can help us solve the problem.
But on to what you really want to know...
Little Noah Man came off the ventilator today!!! Hooray!
After a good chunk of sleep last night, he was in a much better mood today. We were able to distract him from the breathing tube by playing with him and that allowed his respiratory rate to stay in a much more normal range. They weaned him from a little of the support the ventilator was giving him and then took his breathing tube out around 5pm this afternoon. After a little coughing and sputtering, he took off breathing like a champ!
They currently have him on the BiPAP machine to try to support his respiratory system a little ... he looks like a cross between Darth Vader and Snuffaluffagus when it is on. He has a black skull cap that covers most of his head down to his neck and then a blue mask over his nose that connects to a long tube that goes over his head. Pretty funny looking. I'll try to snap a picture of him at some point as my description doesn't quite do it justice.
He was much more tolerant of the BiPAP machine this time around and seemed to be in good spirits. He has been playing with his toys and interacting with the doctors and nurses. He is still having a hard time resting as his current bed in the ICU is in a high traffic area, but he has taken a couple of catnaps over the course of the day.
A couple of specific prayer requests for the next few days:
-We want to have a pow-wow between the doctors we work with in the ICU and the pulmonary doctors who will take care of Noah when they move us back to the 5th floor... there has been a communication gap between these two teams that needs to be filled before Josh and I will feel comfortable with the plan for Noah's care.
-Noah will begin receiving formula through his g-tube tomorrow. Please pray that he digests this food easily and that there are no respiratory side effects, specifically with any feeds that take place while he is on the BiPAP machine.
-We need Noah's carbon dioxide levels to stay in the normal range.
-We need answers as to what is causing Noah's respiratory difficulties... no one seems to be able to tell us this at this point... and a course of treatment that will not dramatically affect his quality of life (freedom of movement, ability to go to Rise, etc).
Thank you, thank you, thank you, for joining us in praying for our sweet little guy. He steals my heart every time I look at him and I just want to scoop him up and take him home.
12 comments:
love and hugs and prayers for you all! I am exhausted just reading this- hope you can get some rest. Hug that precious boy.
Our prayers are always with Noah, you and Josh. Try to get so much needed rest.
The Cooks
Thanks for keeping us updated in the midst of all of this. We are praying.
Lots of prayers for all three of you. So glad today was better and hopefully they will continue to get better each day forward. Love to all three of you...you guys are wonderful parents to your sweet little boy!
Hi Deb and Josh,
This post is a perfect way to end a hot, muggy, rainy St. Louis day! Now, if the Cardinals can just pull an extra-inning victory out of their hats! :) I will pray tonight for Noah's continued improvement. Good idea to schedule a meeting with the whole "team" involved with Noah's care. Write down all your many questions and make sure they are answered to your satisfaction. I hope Noah has a peaceful night --- and the same goes for both of you! Take care and thanks for keeping us updated.
Love, Kathy
Just wanted to let you know that I'm keeping up and I'm continuing to pray for you and the little guy. I know He has you all in His hands.
So glad to hear that he had a better day. We will continue to pray for his steady improvement and for you and Josh to get some much needed answers. I know it is really aggrevating when the doctors have no explaination. There are times with my dad's health that I had to go to the batting cages when I lived in STL to relieve the stress. Now I have to settle for a really brisk walk. Take Care!
I've been waiting for this post. So glad to hear your good news. I'm amazed at you and Josh, what encouragement you are to me. And yes, little Noah is sooooo cute, I'd like to see the Darth Vader, snug... attire. Praying for food, breathing and teams to work together, also for your wisdom and rest.
YAY!! So happy for good news!
Thanks for passing on this wonderful news! You are such wonderful parents. It is so true that you can't just trust the medical team. Being proactive really makes a difference in the quality of care. Though I'm sure it's hard to keep up with that level of assertiveness when you're so emotionally exhausted. I'm very sorry there are still unanswered questions.
Will pray as you requested. Bless you all!
So relieved to hear Noah is improving and that you are having a meeting with the medical team,you are such great parents, just keep on gathering informatin and asking questions. God will lead the way. Hugs to all of you,give Noah a BIG one. Much love.
Prayers and smiles that your road leads you ALL home very soon.
Thanks for sharing your story; this is a true love story of a very powerful family.
God's peace to you all.
Lynn
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