I have been feeling a certain amount of irritation with the lack of hands-on rehab that Gavin has received, both inpatient and out. After his first surgery, we never seemed to be able to connect with his therapists, as it was always naptime or there was some emergency going on, or Gavin was feeling terribly unwell during chemo. I knew then, and recognize now, that he was not one of the patients with the direst need, but at the same time, he needs help and guidance too.
We did a few physio sessions in the gym at Sick Kids, and Gavin loved it and got along well with his physiotherapist. However, once she left on mat leave, we never again had a physio appointment. The other physiotherapist who was “following” us for our time in isolation was lovely but didn’t see the need to work with Gavin at that time, as we were stuck in our room and limited to what we could do. Plus, we gave him little exercises to do every day on his play mats. I hoped that once we were out we could truly begin the rehabilitation process and build his strength. We were assured by a number of people that we could get into the Bloorview outpatient program within a few weeks. I waited two months for our assessment appointment.
We finally went to meet with the Brain Injury Team on Wednesday afternoon after discharge. He was examined by two doctors and we spent a long time (almost 2 hours) talking. Gavin was bored and nap-deprived. Finally, they informed us that Gavin is doing very well, so will be referred to the physio team and feeding team for further help, and we will hear from them in a couple of months! And, we will follow-up with them a year from now.
I know that Gavin is doing well. I know that the range of brain injuries is vast and his is not at the most serious end of the spectrum, but, he still lacks balance and strength, he cannot run or jump, and he falls down a lot. He also still has an NG tube and unresolved feeding issues. All of these things need to be addressed.
I’m frustrated at the number of people who are “following” us. Stop following us and do something practical already!
Sometimes you have to take matters into your own hands, and can’t rely on a strained health care system to do it all. I decided yesterday that it may be time to get Gavin back into some of his old activities. He used to have a blast at a great neighbourhood gymnastics school called T-Dot Tumblers, so I am going to sign him up for one of their spring classes. I’m also thinking that we may just have to reach deeper into our stretched pockets and pay for private physio. Time to check how far we can ride the coattails of our insurance policy!
I am not a patient person. I like to see results now, now, now! (To echo a certain toddler) In this case, I feel that we’ve all been patient long enough and it’s time to get to work.