Another busy day of tests. Today brough an ECG and a renal GFR (to test kidney function) and we are waiting for another ECHO of Noah' heart to be done yet today. The transplant team is also doing a pre-transplant workup on Noah. No, there is no transplant plans right now. But since many kids in their program end up with bowel and liver transplants, they start the workup in case it is needed in the future.
Good news...after a talk with the team, Noah's ethanol locks will restart today. Our doctor is very on board with them, and managed to get it all sorted out with the powers that be. In fact, the team is very excited about the results we have had. They are hoping that Noah's presence here will allow them to forge ahead and try the locks on other kids. Who knows, perhaps this is our sole purpose for being here! A huge relief for us and it has boosted our confidence in the team here.
There is also lots of discussion regarding what to do with Noah's prolapsed stoma. No final decisions yet, but the surgeon is leaning towards doing the surgery here in the very near future, and he has some ideas of what to do after Noah's abdomen has healed. Today was his first good look at it, and he was surprised to see how big it really is. We can't wait to have that taken care of.
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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8 comments:
Praise the Lord! I am so glad that you have been able to restart the locks, and that the doctors are being so proactive about things!!
Great update Nichole. Sounds like you are being heard and that the doctors are willing to work WITH you! Awesome news about the ethanol locks. How is Noah doing with all the tests? We continue to pray for you guys. Hugs to my Bean...
Wow! That's great news. It's wonderful that you have confidence in the team! And I'm so happy about the ethanol locks... I was thinking really positively about it this morning. I hope you and Brad are settling okay in Toronto.
jules
There was never a doubt in my mind. God will use this in a mighty way. mom
I am so thankful that worked out. We love you Noah and will continue to pray for you.
Laura
Noah continues to amaze me. God has such cool plans to use Noah around every corner! Praise God!!!! I am praying for u guys!
Great to read your update. I'm glad you are happy with Dr. Wales, and that through working together, the ethanol locks are a go. Hopefully you are building trust between you.
You are an amazing advocate for Noah's needs, as evidenced by your results with the ethanol locks. I don't know the medicine here, but I do know how important for parents and medical team to trust each toehr and work together.
I had errands to do downtown today and realized as I was driving down Bay Street near Gerrard that I was literally a couple of blocks away from the hospital. I'd love to come and meet you if you're up for that. I know your days have been full with testing etc, don't know when a visit might be a welcome distraction. Up to you of course, just want to offer support in whatever way I can.
Alison
It sounds like the staff is really on your side there. That must be reassuring. I hope your stay there continues to go smoothly and that you can still go home as planned in a few weeks!
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