I've been so busy working on my other blog (Noah's Wish Trip) that I've been neglecting this one. But all is still "ok"...we are still home and hopefully we will not be in hospital for Easter this year. Noah had bloodwork last Thursday, and this morning we had TPN clinic. Bloodwork all looks good, even his liver enzymes are coming back down. And everyone is very happy with his weight gain. So I feel I can relax a bit...
We talked a bit about Toronto as well. We had heard back from them the day before we left for our trip. They wanted us to come to Toronto Sick Kids for April 1st and stay for a month of investigations and testing. With our trip, and then our PICU stay, we decided that we just couldn't do April. So for now, we are asking for a teleconference, in the hopes that we can do some things without having to travel and be away from home in a strange city for weeks. I am having a difficult time with the whole thing. On one hand, I do think we need some fresh eyes on Noah, and perhaps there will be some new ideas out there. But to be away from home, from Brad & the kids, to be in a strange city, surrounded by strangers...well, it's tough to think about.
We also talked a bit about the stoma surgery...there is no way our surgeon will do it anytime soon, with his lungs in such a bad place. So for now we need to live with our stoma and try an ostomy bag to cover it. Noah is still oxygen dependent almost all the time...still wheezy, very much like he was in Florida...which keeps me on edge...my bag is still packed and I continue to wait for it to escalate. No one seems too surprised though, considering all his lungs have been through this winter...apparently the adenovirus can leave long lasting issues. I am just praying that this lung damage is not permanent, and that we will be able to wean the oxygen soon. It just makes it even more difficult to get out of the house when we have an oxygen tank to drag around on top of everything else.
Brad is coming home tonight after a week away in San Diego for a conference. We will all be glad to have him back!
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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2 comments:
I am so glad u r still at home! And that is good news about the liver enzymes. Will pray for those lungs! Thank u so much for the update and the wish trip stuff too!! Thank u for sharing with us.
Hello! I too am glad you are still at home. And I am so impressed that you have started on your trip report...you put me to shame! I am just popping in while we unpack. Now Mark is sick on top of things, hopefully nothing but a bit of a bug. And we have our own version of cold and teeny teeny snow falling but not staying.
If you do end up coming to Toronto for a consult at Sick Kids, I hope you'll pass along any questions about logistics etc. We live about 15 minutes from the hospital, the boys were in the NICU there for 3.5 months and we've had our share of subsequent visits, for clinic, surgeries and the like.
I Noah is a complex child...with whom would you consult? Just wondering if it's anyone we know.
Alison
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