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 5th
month 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!!
No comments:
Post a Comment