Trauma Hospital to Community Hospital = very stressful! Shawn had spent about 6 weeks in the Trauma hospital and it was their policy to repatriate patients back to their home hospital within 4 weeks of their arrival. Nobody told us this was going to happen until about the 4-week mark and we fought that happening until about 6 weeks. It is not that I had anything necessarily against our community hospital but I just felt that Shawn would have better care staying on the Neuro floor. I seemed in his best interest to be dealing with doctors and nurses that specialized in brain injury. Not only did our home hospital not have a dedicated rehab centre but it also had no neurologists. While in the trauma hospital, Shawn was visited by the Neurologist that ran the Slow to Recover program. She oversaw brain injured patients and basically determined if the program will benefit him or her and then places them on a waiting list. The Slow to Recover program for our city was located about 45 minutes from our house but it is also the only program in the entire province and there are a total of 6 beds only. The program is different from other brain injury rehab programs since the patients that enter it may or may not still be breathing with trachs, could still be minimally conscience but all are considered “slow to recover”. This is where Shawn fit in. When we left at 6 weeks, Shawn still had a trach, non-verbal and was awake a small portion of the time. Even though I was still very nervous to go to a hospital that I felt wasn’t as “experienced” as dealing with brain injury it was not overall a bad experience. In a way the events that played out were helpful in Shawn getting into rehab sooner. The standard to be accepted into a Slow to Recover program is generally 6 months post injury, so at 6 weeks we knew we a lot of time to wait.
Once we arrived the accepting physician, who was a surgical doctor because they did not have any Neurologists or Neuro Surgeons, saw Shawn. I wasn’t sure how to take her at first because she seemed pretty blunt and upon meeting Shawn and I the first day, she wanted to let me know how bad his injury was. Right away I was thinking…here we go again!!! However, once spending more time with Shawn and seeing the alertness in his eyes when he was awake she became more optimistic. It was fairly early on that they had OT and PT start doing some exercises and various therapies with Shawn. They did not have much experience with this type of injury but that didn’t stop them from getting right in there and doing what they could. They worked at tracking objects and did range of motion and also made sure the nurses had him out of bed and in a wheelchair daily. He didn’t have much tolerance to sit for a long time in a wheelchair but it gave us a chance to go on walks and get outside and look at other things other then a hospital room. There still wasn’t a lot of rehab going on and I was getting very nervous about losing valuable time. Along with Shawn’s sisters , I would do my own rehab with him. I would show him pictures and talk about people in the pictures, lay out large puzzle pieces and he would work very hard to put them together among a few things. One thing that was very irritating was that they seemed so nervous to make any changes to the way his care was when he left the trauma hospital. For example, we desperately wanted the trach to be taken out but first they had to “cork” it for several hours a day to ensure he could maintain breathing on his own. Even though he was breathing with no problems once we started this, it was weeks and they still didn’t want to remove the trach. It was when he went back to the other hospital for some specialist appointments and follow-up that they just removed the trach. Protocol is usually to remove within 5 days once a patient is breathing on their own with it corked and like I said the community hospital had let it go for weeks. Another issue was with Speech. I knew she was very out of her league but she took no real interest in finding a way that Shawn may communicate or even access his swallowing for that matter. When nobody was looking we would put a tiny bit of pudding on his tongue and he would swallow it with no difficulty. I have to say that this could be dangerous because he could have aspirated, however his sisters are both nurses and knew by watching him that he would be able to swallow the small amount. One of the biggest screw-ups that actually haunted Shawn for months but on a positive note landed him in rehab sooner. Shawn was suffering from something called “drop foot”. This happens when someone is not only in a coma for an extended period but also when they are immobile for a long time. Your feet just drop due to weakness, muscle/nerve damage and/or paralysis. What should have happened early on is that he should have been fitted for splints to hold his feet up but that didn’t happen. With a lot of persistent we were able to have the staff order in some leg splints for Shawn that he was suppose to wear periodically throughout the day. They are never intended to be worn for long periods of time especially when you first get them because they can cause blisters and skin breakdown from the pressure. All it took was one nurse to put them on him incorrectly and he ended up with a blister on his heel that took him over 4 months to heal. While he was a rehab he was under the care of a wound nurse, that is how bad and deep that blister became. In a way that skin breakdown was one of the factors that lead to him getting into rehab quicker then expected.