We seem to have made it over the hump and Noah was back today. Much less pain and many more smiles. We got him sitting up for short periods and he is looking very well. Still lots of respiratory stuff with wheezing and secretions, (lots of ventolin, suctioning and a couple doses of lasix) but we were able to move out of the constant care room and back into our old room. CCRT continued to follow him closely today, but we are all much happier with the way he looks. We took his NG tube off suction today, and again had a huge increase in secretions and suctioning. This has the team scratching their heads, however, we decided to leave him off suction and see if things settle down. Tomorrow the plan of the day is to start a trickle of feed into his J tube.
Tomorrow it will be 4 weeks since we came. The plan was that 4 weeks was the longest we would be here. Now it seems as if we are just beginning. The bright spot is that Brad and the kids are on their way and at least we will be together.
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:
Glad that Noah is back today! Hope you will feel better about being there once the kids and Brad arrive!!
Still praying.
This is good news! Praying that Noah will continue to improve and things will work well. I am so glad that Brad, Kailyn and Josh can come out to be with you for awhile. Hopefully, you will all be able to enjoy some touristy stuff while you are there and then come home together. We also continue to pray for your strength and peace of mind. Love to you all, Grandma L. and Great-Grandma S.
Praying that Brad and the kids had a safe trip. Enjoy your time with them. Hopefully, Noah is on the mend and will be able to enjoy having everyone together. Blessings on your family and hugs to my Bean...
So good to hear Noah is sitting up andsmiling. We are praying all these other things will settle down, and that they will beable to try the j tube today. I am sure you are so relieved to have Brad and the kids there. I cannot imagine how difficult it has been for you this past month. Love mom.
I'm so glad that you guys can be together!!
Hooray!!! that Noah has come over the worst of it. I just love how Kim always calls him "my bean." I'm starting to think of him in that way too. He's such a cute "bean".
Treasure your family as you will all be together for awhile and praying that things will progress for Noah in such a way that you will be able to come back sooner than you think. With God ALL things are possible and we will be praying for exactly that. Greetings to Brad, Kailyn, and Josh. You are always in our prayers too. Love Auntie Hilda
Erik and I are back in Abbotsford now and I'm all caught up on Noah's last few days of surgery. It's hard to believe you've been there a month already and, like you said, it's still just the beginning. I'm happy to hear that he was more himself yesterday - that must be encouraging. I hope Brad and the kids are already there with you and that you guys can enjoy the next couple of weeks together as a family!
Hello! I'm late to post, and I hope by now Brad, Kailyn and Josh have arrived, had a grand reunion with you and Noah, and Noah has continued the upward swing - long may it continue. I hope the j-tube feedings were tried today and were successful.
I'm glad the Toronto weather was better than expected today, but sorry that some of our Canada Day celebrations are cancelled because of the city workers' strike.
I'll try and reach you in the next day or two - eager to redeem myself as tourguide and Toronto ambassador after I completely forgot about the Riverdale Farm!
You are all in my prayers,
Alison
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