Kyle's NICU Story in Pictures

Wednesday, January 16, 2008

Early Wednesday Morning - Kelly

It is 4 a.m. again and I am ....  milking myself (I am so NOT a fan of this - but must admit - it has been good for little kyle!)anyway just talked to Amy, Kyle's nurse.  and he has had a couple more of these large de-sat episodes that he had a hard time coming up from.He requires extra oxygen and stimulation to come up.  Then he does wean back down and it has only happened 3 or 4 times since the nasal cannula.BUT he is still on it and they are watching him.  One of his NPs wants to wean him tomorrow down on the flow of his nasal cannula?!  not sure about this - so I am going up there at 7:30 a.m. tomorrow to plead our case and see what is going on.

had our EEG today - uhhhh.  met with a new neonatologist that wanted to load Kyle with Phenobarbital again!  this would be the third loading dose.  and this Doctor talked about the injury to kyle's brain which we DON'T know if there is one.  but he is saying that there probably is and he is concerned about kyle being at sub-theraputic levels of the medicine when his brain, b/c of the grade 3 inuury, is more likely to misfire (seize).  But like I pointed out to him "it has been this way for a month!  so if you didn't follow the neurology recomendations = it is kinda late to cover their buts.  part of me worries that they are just covering them and not thinking about Kyle.  but he says they are not doing.  Dr. Fant (i think is how you spell his name) He was very concerned and he did the EEG at sub-theraputic levels and then loaded him again!  3 of his 4 big desats were after this!  that medicine makes him sleepy so he has a harder time remembering to breathe.  I asked why other docs would leave him there - he did not comment and said that is why we want to all get on the same page while he is hear and so we have a BIG meeting with neurology soon. I am dreading that - they are so negative - they don't think they are but to me they are.  VERY.

anyway - no primary nurse tomorrow so I will be there bright and early to listen and comment on our thoughts!

I am asking that God you grow his lungs to where he doesn't de-sat and have to work so hard to breathe.  Would you give him rest and cause him to grow.  Would you heal his brain that when they do the MRI and this EEG they only see perfection that you created and have restored.  I now you heal - I now that - one thing I know - I know you do this. Please.

4 comments:

Anonymous said...

I will be praying for his brain today and his lungs.

Still praying, still believing and still expecting contiuned growth and healing and praising God for what He has already done!

Candy Humber

Kim McDonald said...

I will be praying that the Lord gives you wisdom and the words to speak on Kyles' behalf. I am sure that meeting with a team of doctors can be overwhelming, but I know the Lord will cover you with His peace. I am so happy for you all with Kyles' progress and I will continue to pray that He only gets stronger with each day!!

Anonymous said...

I will pray has hard as I can for you and dealing w/ this meeting. Good luck! Hug that baby for us. (and jack and jadon too).
Stefanie

Debbie J. said...

I'll be lifting you before the throne as you meet with doctors. This is just a short valley in the rollercoaster ride... the uphill peak is coming! Continue to trust... when you get tired, remember there are hundreds of us out here keeping the trust for you!

Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!