Day 10 today...it's been very long days. Noah's central line was removed on Thursday. The line actually broke that morning, so it was good timing that it came out. The line tip was sent for culture and came back growing pseudomonous. So antibiotics were restarted along with the antifungal. On Friday Noah recieved a blood transfusion for low hemoglobin, which has given him a nice boost. We did manage to dress him up in his Tigger costume for Halloween and the med students came with candy for all the kids in the evening. Of course, I had to help Noah with his candy!
He is tolerating is GJ feeds again, and we are almost back to his full feeds. However, he continues to spike fevers, usually a couple of times a day. Still waiting on the most recent blood cultures, but so far they are negative. The question is whether there may be another possible source of infection in his body. If the fevers don't stop soon, we will likely do a gallium scan. He is still requiring a bit of oxygen, but is slowly starting to look better and spending more periods awake. But he is still so far from his bright, energetic self. This slow recovery is unusual for him, but a fungal infection can be tough to beat.
For now it's a "wait and see" game. Wait and see what the fevers do...wait and see how the feeds go... There are still many unknowns and differing opinions, but the one thing we all agree on is that we need to try and keep Noah line free. The risks of an infection ending Noah's life is very high and right now, this risk outweighs the benefits of TPN. It's a frightening step, and no one can predict how it will turn out, but we have no choice but to try. The next plan of action is to try and figure out a way to get enough nutrition into Noah without having to put another line back in. He has been wasting away these past days and any fat he did have on his tiny body is gone. It's tough to fight without proper nutrition and this has taken quite a toll on him.
I feel like we are in between a rock and a hard place right now with no great solutions. Praying we can make the best choices to give Noah the best quality of life that we can.
I miss my Noah.
On September 21/05 we were blessed with a beautiful son. Born with a chromosome 12q deletion (q15q21.2), the challenges were many...cleft lip/palate, complex feeding issues, developmental delays, failure to thrive, multiple infections, blood clots, asthma, sleep apnea, GI and pulmonary bleeds, TPN dependency and kidney issues. Noah embraced life and taught us how to love. On July 29/09, Noah's journey ended, leaving us on a new journey...this journey on the pathway of grief...
About Me
- Nichole
- I am mom to 3 beautiful children. I also work casual as a nurse. Our life is a crazy one, and nothing like we ever expected it would be. Yet, this journey has changed me and the way I view others. And it has helped us slow down and enjoy the most precious things in life. I wouldn't trade those lessons for anything.
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6 comments:
We have gotten so used to Noah's smiles and his hugs, and hate to see him hurting. I know this is hardest on you, and I am lifting you up in prayer. My heart aches with you."They that wait upon the Lord shall renew their strength. They shall mount up with wings like eagles. They shall run and not grow weary. They shall walk and not faint" Isaiah 40:31 love mom
Nichole
My heart aches with you, as you watch and care for Noah. Your last line.."I miss my Noah" brought me to tears. I miss him too! Know that your family is never far from my thoughts and always in my prayers. Love you Bean!
Praying for you guys lots these days. I'll be praying that God would give you all wisdom as to the best steps to take for Noah in these next days - and for no infections!
I know we have never met, but I feel like I know you both. I witnessed a miracle today with my own son, and I have great faith that God will come through with a miracle for your son as well. Please do not lose hope...God is with you.
Nichole and Noah and family, you continue to be in my prayers.
We've never met but I've been following your blog which I heard about through another friend. I pray for you that you will all have strength in what must be a very difficult time.
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