A very quiet day today. Really nothing happened today. Although, talking to the team, they were very happy that we had gotten so much done this week. So now it is the weekend, and everything grinds to a halt. After some pushing today again with the powers that be, we were able to organize passes, as long as I hook Noah up to our pump tonight and take over his care for the night as they don't know our pump. Of course, that is not a problem, so tomorrow we should have the day free to wander the city.
We are going to push Noah's hours off the TPN to 6 hours tomorrow. They are hoping to get him to 12 hours on, 12 hours off TPN. We've never been able to get past 6 hours without Noah dropping his blood sugars, but he was alot smaller back then, so we are going to try again. It would be very nice to gain more freedom.
Test results are slowly trickling back to us...bloodwork looks good...Noah's heart looks good...gallbladder ultrasound shows some sludge (risk of gallstones)...kidney GFR was ok, with the right kidney emptying much slower (there may be a partial obstruction from the stone that we already knew was there)...and ultrasounds of his major vessels look much better than we thought, so it looks like Noah has more options for future central lines, which is very good news.
Next week will bring some intestinal tests and perhaps a biopsy. But we are looking forward to having the weekend off!
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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6 comments:
More options for future central lines!!!! That is fantastic news. Sounds like you guys are doing really well over there. I hope you have fun going around Toronto tomorrow! What do you guys plan to do? I am so glad you guys are doing so well. :)
More options for future central lines!!!! That is fantastic news. Sounds like you guys are doing really well over there. I hope you have fun going around Toronto tomorrow! What do you guys plan to do? I am so glad you guys are doing so well. :)
Glad to hear it was a good day with some good results. And weekend passes are wonderful. Enjoy some time checking out the city. If it is nice tomorrow, Centreville on the Island is great for kiddies Noah's age. I'm sure about accessibility. But the ferry ride over is fun. It is supposed to be 20 degrees and sunny tomorrow.
j
I'm glad to hear you had some good results today - more options for future central lines is such great news. And more good news on the weekend passes - I know the weekends can be so l-o-n-g and quiet down there.
Given that you've got a big Tigger fan there (not to mention the princess and pirates fans at home), I should at least mention that there is a Disney store in the Eaton Centre, only a few blocks away from the hospital.
Jules mentioned Centreville and the Toronto Islands. She's right - the ferry ride over is fun, and gives you a great perspective on the city. Accessibility is good (Mark would go with his wheelchair), I haven't been in a year or two so I'm having trouble remembering the rides for the little ones - my guys were into the biggest they had last time we went, but I know they are there. They do have a policy re: attendant care and (unless things have changed), given that Noah requires an "attendant", that adult will be free. If you go, I'd have the other adult just the tickets you think you'll need to give access to anything you decide to go on together, like the train etc. Also on the island, they often have a kids show of some kind, there's a new Franklin's Children's Garden (Franklin as in the turtle from the books and TV).
You might enjoy a walk down at Queen's Quay, and Harbourfront, just to get some fresh(er), further from the city air (OK, it's not really away from the city, but...). Public transit to get there is not bad, and there's always something going on in the summer.
Enjoy your exploring! Reminds me that we have a great city and we just don't take time from our busy lives to explore it more. One of our neighbours is showing at Riverdale Art Walk, and I really hope to have some time to check that out.
Thanks again for the updates!
Alison
Great news about possibilities for future lines! Enjoy your day in the city. We continue to pray for you all, and we are praising God that everything has gone so smoothly so far!
So glad you get the weekend free!! Enjoy it!
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