Finding the Right Team

Having the right support team was such a significant element in making the hospital stay and coming home successful.  Even when Shawn would come for weekend visits we never had access to a bathroom for him.  I am actually so thankful that he doesn’t have much memory about that time because he wasn’t allowed much dignity.  I know that he would still have chosen spending weekends at home, but he was only able to have bed baths and use a commode in his room.  I call it his room but really we just changed the dining room into a bedroom because he wasn’t able to get upstairs to sleep in his own room.  Until we finally moved from our 2-story house to our bungalow, he would ask every support worker to bring him upstairs.  He wasn’t able to understand that he couldn’t get upstairs and that it would be months before we were able to sleep in the same bed.  We were only able to fit a single hospital bed in our small dining room so even though he was home, I still slept upstairs in our bedroom.  I was getting further along in my pregnancy so even if I wanted to try and climb in be side him I was rather large and didn’t fit.  He was so hard to reason with cognitively and would do the most irritating things in the middle of the night.  As much as I was completely blessed that I could hear his voice you don’t really care too much about that when you are woken up in the middle of the night with him calling for you.  He would do this even after the baby was born and I would get so mad because I would finally get the baby to sleep and then Shawn would just start calling out for no reason.  I would give him the remote at night before I would head off to bed and put the sleep timer on his TV and for whatever reason he would crank the volume up.  He used to wear these plastic leg splints from his knee to his foot, almost like a boot, and he would bang them on the wall.  I would eventually move his bed to the middle of the room just so he wouldn’t wake the whole house up.  It’s kind of humorous now looking bad at the things he used to say and do and I would have no idea what he was talking about or why he was doing it.  About a year after he was home we had 2 great support workers that actually made a t-shirt up for him or all the crazy things he would say.  It was several months after he got home because he started talking about 6 months after his accident, but wasn’t saying a lot till about 8 months after.  Even when he started talking it was just whispers and it was months before the staff at the rehab hospital even heard it because he would stay quiet for them.   The days were so long at the hospital so the quietness and comfort of staying home on weekends was a relief.  Since I was in my 5thmonth of pregnancy, there wasn’t much I could do to transfer and move him, since he was dead weight.  The agency that we had doing our case management also provided support workers so they sent out one their staff named Amanda to work the overnight shifts.  She would come around 7pm and stay until 7am and would take care of any of his need at night.  He regularly needed to be shifted in bed and was on G-tube feeds so changing the feed bags at night was necessary.  At the early stages of his recovery, he wasn’t able to swallow so all his liquid “food” was given to him via a G tube, which is a tube that goes right to his stomach via an incision.  He also was given his medications this way and they needed to be ground up and then mixed with water and a syringe is used to push the meds through the tube to his stomach.  Amanda was such an integral part of making Shawn’s visit home a success.  She become such a valuable person in our lives and continues to be to this day even though she doesn’t work with Shawn anymore.  She not only would take care of his personal care needs but once he came home for good she joined the rehab team.  We have had and still have some wonderful people come and go from Shawn’s team but Amanda is one of the few that we will make sure is in our lives forever.  I want to go into more detail about the obstacles of having staff in your home on a continual basis but I’ll save that for a future blog since I have some pretty strong feelings about it.  We have had some treasure, like Amanda, but also some absolute rotten ones, which happened just recently and I am sure will happen again since unfortunately it goes with the life we have now.  So as I mentioned at the beginning having the right team is so crucial and just because someone was recommended to you or your case manager recommends him or her doesn’t mean you have to stay with him or her.  It’s so hard in the beginning because it’s all very overwhelming but looking back I know I made some great decisions and I also know I should have made some changes earlier then I did.   We have gone though so many Personal Support Workers and Rehab Workers that I can’t even remember most of their names but the ones that I do remember are the ones that impacted our lives in such a positive way.  I was very fortunate that not only did I have someone like Amanda helping me through it but we also had the most wonderful, caring legal team that were huge advocates for us.  When Shawn was in ICU, it was my brother that suggested we get a lawyer as soon as possible.  At the time you aren’t thinking about such things like that but it was his strong business sense that knew the earlier you get them involved the better you and your loved ones best interests are protected.  It was probably within the 1st week that we met with several law firms and decided to go with Gluckstein and Associates.  Dianne, the firm’s medical consultant, was such a warm person and I immediately feel in love with her bright personality and kind manner.  I found it very interesting that the nurses in ICU seemed shocked that we found a lawyer so early on.  I mean what business was it of theirs other then they had to start crossing their “t”’s and doting their “i”’s, which you better believe happened fast.  All of sudden Shawn was getting x-rays on his hand and it was being treated for a fracture and we didn’t even know it was fractured.  It was probably a week or more after his accident that this was even addressed by the medical team.  The sad part of this whole thing was that they wrapped and bandaged his hand but kept his 2 middle fingers bent down in the bandage.  So 6 weeks after taking the bandage off , those 2 fingers had contracted so bad from being left like that to this day he is not able to straighten them out.  There is nothing that can be done about it now since they are on his paralyzed hand so surgery is out of the question because he cannot do physiotherapy to strengthen them.   Anyways, having a legal team on board allowed us to push for more team meetings with the doctors in charge back in ICU but it also set the ball in motion for the insurance claim.  Dealing with insurance companies is a nightmare so having strong legal representation makes it a tiny bit more bearable.  Dealing with insurance adjustors is a whole other blog subject!!

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