Things have been up and down here with not alot of change. Noah is still spiking fevers, although today he only had one spike, so that's an improvement. He is in a very precarious situation right now. Having yeast growing in his bloodstream is very dangerous, and very hard to clear. But it was almost inevitable though, after all the antibiotics Noah had been on. We have 2 services with completely differing opinions right now. ID (Infectious Diseases) wants Noah's line out. And our surgeon refuses to pull the line. She is not convinced that pulling the line out would help, since we already have an infected clot and possibly a bone infection (still waiting on the final bone scan results). And right now, because of the remaining clots, Noah has only 1 site left to put a line back in. So it is critical that we try and save this line. There is no right answer here, and either way, we may lose this battle. And so it really is a waiting game at this point to see what Noah's body will do and we continue to reassess the line situation daily.
Noah started the Ampho B (antifungal) early Saturday morning. It's nasty stuff that takes 5-6 hours once a day to be infused. It makes Noah itchy, gives him a low temp and basically just makes him miserable. So far his kidneys are handling it ok and they are being watched closely. His platelets and hemoglobin have been dropping and he's been requiring more oxygen, so yesterday evening he recieved a blood transfusion. His hemoglobin is looking better today, however his platelets continue to drop, so he may need another one in the next day or two.
Thank you for all your thoughts and prayers. Please continue to pray for wisdom to make the best decisions for Noah.
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6 comments:
I have been reading your blog for quite some time and praying constantly. My dd was also born with a UCLP and reading Noahs story has been a huge reminder of Gods love. I will continue to pray, through the tears, for your beautiful baby boy and you as parents :)
Jaime
We are praying that God's perfect will and purpose will be done in Noah's life. Although this valley is the darkest it has ever been for you all, God is still in control.Our heartfelt prayer is that Noah is not suffering thorugh all of this, and that he senses Jesus near him. We pray for God's wisdom, not only for the drs. but also for you. That you would sense His peace throughout this journey. "And yea, though I walk through the valley of the shadow of death, I WILL fear no evil, for thou art with me. Thy rod and thy staff, they comfort me" We love you. Love mom
Nichole and Brad my you experience the peace of God in the life that seems so out of control at this time. Also praying for Noah and that he won't feel much pain as
God holds him in His hands in his fragile condition. God has given you an amazing ability to care and cherish Noah and you have been such an example to all of us. We will continue to pray for you.Emmy
Hi family,
I pray for Noah every single day (multiple times). I will continue to pray that God keeps him in HIS care. God is an AWESOME God and Noah will get better!
I pray that you all as a family continue to be strong and blessed in the Lord.
Take care and God bless you all!
We are praying for Noah and peace for you all.
We've been reading about Noah for a while, and wanted you to know that you all are in our thoughts and prayers- that you will feel God's arms around you and have clear heads to make decisions, experiencing His peace.
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