Posted on November 25, 2017
We are so thankful for each and every one of you, and want to just let you know that. Things have been utterly insane being discharged from the hospital, which is why we have been a bit quiet. I wanted to fill everyone in on our plan, and what has been going on for the past week.
So, for the past 3-4 weeks, we were sitting in the TCC (Transitional Care Unit) at Cincinnati Children's waiting for the other shoe to drop, and ultimately trach Nash. His health is continually improving, so together with Nash's physicians, we decided that it was time to transition home. They have instilled so much faith in our capabilities as Nash's parents and primary caregivers. Because of the faith they have in us, we both felt so confident that the right decision was to get him home, and wait to see what happens as there will be many warning signs if things are going crazy.
We have come home with an NJ tube and on bi-pap for sleep/naps. Our goal right now is to see what Nash is capable of now that he is actually thriving. If he continues to get stronger (which he has over the past month), we will keep on this path. If he gets continually weaker, or has a change in status in any way we are heading back for his tracheostomy and GJ tube. He still is continuing to baffle everyone, and the neuromuscular pulmonologist even said he feels as conflicted as us about the tracheostomy. We all agree that he will probably require it at some point, but right now he is doing amazing, and we are trying not to fix something that isn't broken... So keep praying for us!
1 week home, and what a week it has been!
Saturday, November 18- we arrived home with Nash and it was his 1st birthday! He did amazing on the 5.5 hour ride home, and looked out the window a majority of the time, or he slept. It was so cute, he was so excited. When we arrived home, things were super stressful as we had to unload an entire trunk of equipment and set it up at home for the first time. In the meantime, our little friend pulled out his NJ (nasojejunal) tube. We called around to get back in with interventional radiology at Lutheran General and Evanston, and both were telling us we had to be admitted. After 4 months, you can imagine how I handled this news. We called Milwaukee Children's and had an appointment the following morning!
Sunday, November 19- Drove to Milwaukee Children's and spent 1/2 of our day having Nash's NJ tube replaced. He did wonderful. Then, my mom and sisters set up a little birthday party/homecoming party for Nash! We had a photographer and there was a superhero theme- for our little superhero! When we got home, Blake wound up having a fever, and we were freaking out... well, because of the obvious.
Monday, November 20- Such a beautiful day- I was able to take Blake and Nash on a walk, and took Blake to the park. At 1:00, I had a 2 hour meeting with the President of Cure SMA, Kennth Hobby, at Starbucks in Northbrook. Walked in, and Nash's theme song (The Cure) was playing - NO, I am not making this up... and I had a mini-meltdown while he was ordering my drink. Anyways, talk about a wealth of information. We have been so fortunate to have so many people reach out about all of the clinical trials SMA has going on! Unfortunately, SMARD patients do not qualify for any of these trials as they are on a different gene. That said, the AAV9 therapy that is being researched in SMARD and in Phase 3 clinical trials for SMA is being observed as a potential cure for both! Kenneth has given me so much information to chew on, and has also provided timelines, contact information for others and so much more. Not to mention, he is very much tied into Avexis.
Tuesday, November 21- A sorta lazy day. We were reunited with Nash's Physical Therapist! She hasn't seen him in 4 months, and it was so great to catch up and he did so well. After PT, we spent a majority of our day cleaning our house trying to organize 4 months of insanity that looks like a bomb went off. While we were at the hospital, our basement flooded because our backup sump pump was not plugged in (yes, when it rains it pours) so we had to try and get life back to as normal as possible. Oh, and we just finished our basement this past year- haha. Gotta laugh where you can, I guess?
Wednesday, November 22- Cleaning continued...
Thursday, November 23- Happy Thanksgiving! This is where I have to spill my heart out to every single person that has spent so much time, energy, money and guidance on our family and Nash. I have not been very forthcoming in the gratitude I feel to have each and every person on this journey with us and for the funds we have raised in honor of Nash's disease. I can promise you this- we will be VERY responsible with the money, and have already set out a plan (which we will fill everyone in on soon) for the funds. That said, we are beyond grateful that Nash was able to come home and spend Thanksgiving with our family. We had a very uneventful day and had dinner at my mom's. When we got home, Mr. Man himself managed to (WAIT FOR IT....) pull out his NJ tube again! Yippee skippy! We called Milwaukee and had another appointment this morning.
Friday, November 24- Back to Milwaukee to have Nash's NJ tube replaced. Milwaukee Children's has been super accommodating and we appreciate their availability for us more than anyone can fathom. Had lunch with my family, and then came home and interviewed nursing companies.
That's it for now, and I know that there will be lots of new information to share in the next weeks ahead! So, be expecting a lot of posts from me, and thank you thank you thank you all again!
Sorry that my posts are never short :-)