As I mentioned previously, we had some concerns over the number of days Riley was being allowed to stay here at Healthbridge. Although, we'd love for her to be home, Healthbridge provides her the opportunity to have therapy 6 times a week with each discipline. Once we go home we'll be provided with 2-3 times a week. Now, this doesn't mean we won't all be working with her as well but, we appreciate the professionals being able to work with her as much as possible!
Tuesday I brought up the difference in days covered and although my timing was apparently not right with one of the doctors (who isn't even on Riley's care team ) we were able to finally sort out that she did indeed have more days available . So we officially have a going home date!
April 4th!
Now the fun part of organizing everything we need as far as DME (durable medical equipment), medications, therapies, nurses etc. begins. Hopefully, we will be approved for the number of hours we have requested for in home nursing care. Once we know that coverage we will plan on what we would like to cover in addition. Realistically, due to having two other young children, we will need to have 24/7 care for at least 2-3 months.
So we're relieved. I'm happy that I can still add and thrilled we don't have to fight with our insurance company to get more days covered. One of Riley's doctors was in this morning and was just as excited as we are that we have more days here. That alone reassures me that what my gut was telling was right.
Wednesday was Dave's birthday. He woke up with the boys and got cards from all the kiddos. He and Logan shared some cinnamon donuts and strawberry milk. I guess Logan didn't quite share though! I was able to run home to shower and change and Grandpa Hopper stayed with Riley while my parents watched the boys and we headed to a nice dinner together. Mastro's in Newport Beach plus Newport people watching made for an enjoyable evening! We were crunched for time so Dave didn't get any birthday cake but, we'll celebrate with some cake when Riley comes home.
Riley has had a fantastic week and I am so thankful for that. She is doing so well in all of her therapies. During speech this week she has tolerated the passy valve and even had some purees from a spoon! During conference on Tuesday they told us they stopped VitaStim due to her lack of participation. I chimed back with huh? She's swallowing and her secreations are way down so it confused me. Apparently, the VitaStim was stopped because she is doing so well not because she wasn't participating. We were happy to have this clarified by one of our favorite ST's after Tuesdays meeting!
In PT/OT she is awake most of the time and getting in to new positions everyday. They are having some knee orthotics made for her as well to help break the tone that she has in her legs. This is the one area that she exhibits the most toning. The braces will help so she doesn't overextend her knees when resting.
Riley is scheduled to get her mickey button and have a PH probe done Friday (3/22) at CHOC. It will be an outpatient procedure in the new OR. It will be neat to see the new facility as it opened the day after we left. With her button Riley can wear onesies again and generally be more comfortable without the gtube hanging off of her belly!
Overall, it has been a good week. I really hope for more of these! We still realize setbacks are a very real possibility but, we'll take what we can get!
I've been home with the boys this afternoon and will take them to visit sissy tomorrow when we do our switch. Logan can't wait to see Riley and hopefully we can take Riley out on a walk.
We hope you have a great weekend and a safe and happy St. Patrick's Day!
Cheers!
Love,
Dave, Megan, Logan, Mason and Courageous Riley!
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