A Little Taste of Home

Friday was a pretty typical day around Rehab. We had our usual therapies with a walking trip down to Starbucks on the third floor and a card game thrown in by Recreation Therapy. Alistair is getting better and better in his walking; very stable and balanced. Grandma came midday to stay with Alistair overnight while we went home to get the house ready for him to come home for the night! We spent the evening working on installing banisters on the other side of our stairs so Alistair had lots of support to go up and down. My brother came over and he and Seth ran to Home Depot and then came home and worked. We took a break for dinner and to watch a bit of the UW game and then finished up! They definitely came in handy over the weekend, so it was good we got them in! Thanks! Jeff!!

Saturday morning we arrived an hour before he was to be done with therapies so we could maximize the time we could take him home. They had decided to run an EKG on him as his pulse has been a bit higher the past few days. The EKG was done right after PT and then we had to wait around to find out the information. An hour later, the rehab attending finally went and tracked down the cardiology attending to find out the results. They said they would also like to get an echo, but could wait to do it until we got back as they didn't want to intrude on our overnight pass any longer. We were just sent with the instructions to not be super active (easy) and keep an eye out for symptoms associated with a racing pulse. We had no issues over the weekend. They were planning to do all this stuff this week before his discharge anyway, so we will get the echo done and go from there sometime this week.

We headed home via stopping to pick-up lunch from Ranch Drive-In! Yum! Alistair got around the house wonderfully! He walked around, sat down on furniture and even got on the floor with little to no assistance. The real work was navigating the stairs and of course we were right there to help him up and down. He enjoyed being able to get to his room. He spent much of his time home playing his new racing game. Jeff brought a steering wheel with foot pedals and it proved to be quite successful to use for Alistair. We had also brought home the adapted Xbox remote, which he played Minecraft on with his buddy Logan who came to visit. 

Making pizza!

We had lots of visitors Saturday and Sunday. Many neighbors popped by to say Hi, a few family members came by for a visit and a few of Alistair's friends came to hangout with him. We also went for a walk around the short block in our neighborhood via the park. It took him quite a while to do it with lots of rests along the way. When he is home, we will be walking a lot to build up that stamina. He will have lots of outpatient therapies as well, but we will also work on stuff here!

Gillian seemed to really enjoy having Alistair home. She was wherever he was and did anything for him when he needed help. He would call for help with something downstairs and before we could answer, she would say, "coming!" and run down to see what he needed. They had wanted to have a slumber party in his room with her sleeping on the top bunk. We thought it might not be a restful night for her as we suspected he may not sleep great and didn't want to disturb her. She was a little disappointed, but I think she understood, especially when we told her the next morning how much he was up! Alistair slept similarly to how he does at the hospital, about every two hours he wakes and needs something. But this time it was also too dark and quiet for him. After 2 1/2 months of sleeping in a hospital, I totally get it and was prepared for him to feel that way. Luckily we have a night light available in his room and we used it. We also have an Alistair Monitor (not baby!) still and had it on. It has worked for almost 10 years now and Saturday night is when it decided to not anymore. Alistair came wandering into our room about 3 hours after he went to bed and was mad at us for not coming when he called and called. We felt bad but at the same time were totally excited he got himself out of bed and walked down to our room all by himself. That was lost on him at that moment (but he did mention it later and thought it was cool!). So the rest of the night we had our doors cracked and heard him when he called. Thankfully Halie has a monitor she was just going to get rid of that still works...so we will have a different Alistair monitor when he comes home!

Seth took Alistair back to the hospital last evening, he had to be back by 8pm. It's pretty quite in the unit right now, only 5 patients! I guess they really missed having Alistair around! Today is a short day, they treat holidays like Saturdays. So has half the therapies and then we are going out. Not sure the plan for the day, but no need to sit around the hospital if we don't have to! 

Having Alistair around for 20 hours was wonderful. It felt normal and comfortable and nice to all be under one roof. There is definitely more work involved with having him move around the house, but that will get easier as he gets stronger. We also have to remember he gets tired easier and have to plan the things we do around giving him time to rest. We will have to ease back into our crazy weekends slowly as we aren't great at doing nothing! This hospital stay journey is about to end. 63 days inpatient. A whole new journey is about to start, but at least we will all be under one roof and in the comforts of our home, neighborhood and city! Seattle Children's has been great, truly, and we are grateful we have this extraordinary institution in our backyard. But it time to go home!