A quiet day here, which is what we want...no more bleeding...Noah is content on his CPAP. We did try about a 1/2 hour off the CPAP today. Noah did fairly well, but was definately working to breathe by the end of the trial period and his sats began drifting down. But it is a good start to weaning, and hopefully tomorrow we can do a longer period off the CPAP. There is more serious talk once again about the need for CPAP at home. It obviously seems to help Noah so much...perhaps having him on it at night would allow his lungs some rest, give him more daytime energy and hopefully improve his overall respiratory status. We have some doctors advocating for us, however, he does not fit the normal criteria for home CPAP, so it seems there may be some hurdles to get past. However, we are getting quite used to jumping through all the hoops to get Noah what he needs.
So we are settling in for the long weekend...the kids get to have Easter with my parents...for which I am grateful. But once again, our family is separated for another holiday and I can't help but feel disappointed, knowing that we are missing out on so many memories we will never get 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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4 comments:
Hi Nichole,
Glad to hear Noah is doing better, and also sad for you that your family is not together. Praying that the Lord will hold you close and encourage you today.
Heather
I just wanted to stop by and wish you a blessed and happy Easter. Sending many prayers your way!
Amber
Wishing you a Happy and Blessed Easter in spite of being in the hospital again. Glad to hear that Noah is doing better. Love and Prayers, Grandma L.
When I think of al the hurdles yo have had with Noah, and how God has always opened doors for him, we know that he will also answer this prayer to have the CPAP at home. We are praying specifically for that. The kids are having a great weekend with their cousins, and they will be comng back with Joel and Laura Monday morning. Maybe we will talk tomorrow. mom
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