The "D" word is finally being discussed! The plan is for a weekend pass, and then if bloodwork looks good on Monday, then he will be discharged. Hooray!!
We are still struggling with weight and watery stools, but it looks as if they will be ongoing issues that we can work on at home. We are doing saline flushes into his GJ every 2 hours during the day and have added potassium to his tube feeds. His IV has been out for 24 hours now, and so far his electrolytes are looking good. So hopefully we have found the right combination of fluids and lytes to keep him stable without a line.
An ultrasound yesterday showed his liver and spleen are still enlarged, however no changes for the worse. His INR and PT (blood coagulation tests) are still high so we are treating with Vitamin K. These are all things that will be followed as outpatient. And no plans for a surgical jejunostomy (J-tube) anytime soon. More discussion as to the benefits of this needs to happen before any decision is made.
Hopefully the next update will be from home this weekend!
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.
Posts
5 comments:
YIPPEE!!!! Here's to the D word!!!
sandie
that's great....hoping to hear from you at home next time. We are so glad you can update Noah's blog often. I pray for you every time I read it. Sorry I haven't been to visit.....I've got a cold and don't want to pass it on.
Erica
That's awesome. We're still praying for you.
Awesome news, Nichole. Praying for a great and stable weekend for all of you! Hugs...
Sending happy thoughts, hugs and prayers from Charlotte.
We pray that Noah goes home soon. May God continue to be with you all during this time.
Take care and God bless!
~Rissa and family
Post a Comment