Home modification, support agencies, funding

In terms of 'support agencies',, at this stage Mana Whaikaha  have actually declined funding his needs. WINZ have also declined financial support, and the Ministry of Health have 'indicated' (whatever that means) that that they will not approve modifications based on his current condition, as there are still changes taking place. Unfortunately we are sitting in a bit of a holding loop because they cant determine the reason for his paralysis, and therefore, the treatment options they are trying might work, or they might not. 

So basically we are stuck in this loop of no diagnosis, treatment trials, and and change in his movement levels, dependent on his reaction to the current drug treatments... All of which so far have been short term....  None of which have given him any significant mobility. His condition has continued to worsen over the entire 5 months he has been in hospital. However with each new treatment we still cling on to hope. For example the day after his first chemo treatment he could lift up one leg! However, the next day it was back to being completely dead, not even able to flex a toe.  This is why the funding has been declined. No one is really sure what level of care he will need long term.  The doctors have said (in writing) that they have seen evidence there is permanent damage.

The medical & support team at the Palmerston North Hospital have started talk about getting him home and just coming in as a day patient to do treatments. But I don't know about the reality of this. Sometimes I think they just tell us what we want to hear!   The OT has been in contact to discuss bathroom and home modifications. Even though we have been declined funding so far, the people at Midcentral are working on our behalf to try and fight these decisions with the appropriate agencies.  We also have an incredible group of friends, family, and community members that have been fundraising to help us with the modifications needed. 

There are so many options to consider. It is very overwhelming! It is also difficult to know what level of care Dee will need in the loooong term. Of course we are still praying for that miracle that he will walk again, in spite of the doctors saying that there is permanent damage! (Who are they compared to God?!)

There is so much new equipment Dee needs to just live his life now.  Things like the morning routine (toilet, shower, dressed) is such an ordeal for him, and he needs at least 2 people to assist him to move between the different equipment.  There must be adequate space around him to get a sling hoist and wheelchair or commode chair next to his bed. He needs everything on wheels so he can use his one arm to pull things close to him, rails at the top and both sides of the bed to help adjust himself and roll over so he doesn't get bed sores. His bed needs to move up and down in all the different positions so he can stretch his body and not get sore, and it needs to have access to both sides so people can help dress him, slide him up the bed, get him in the hoist, etc.

The OT has recommended a few things to consider when Dee eventually comes home. 

1. Bathroom facilities
2. Dee move to lounge for space
3. Widen doorways
4. Ramp into house

A complete bathroom overhaul is the best option, but wont be funded, she said. She predicts they will likely do some modification, but she said it will not be the best option, it will be the cheapest. She also said there is a more than 2 year waiting list. I am not sure what this looks like while we wait?? A few options we have to consider are; 

1. Renovate the house bathroom, remove the toilet wall and combine toilet and bathroom into one accessible area. Also needs hallway door moving. 
   
   
2. Create an accessible 'bathroom trailer' that can be parked anywhere and semi-permanently plumbed into the existing drains & water. 

Some of our doorways are too small in the house, and we have some corners that are difficult to navigate with his height (which equates to length in a wheelchair). She has recommended some doors be changed to sliding doors too. 

The main entrance we use to access the house is too difficult for Dee to access in his chair, so they want to put a ramp at the lounge door. For him to access this we will also need to modify the front fence and the path so he can get there. The other option would be to modify the little porch at our main door so a ramp could be installed. 

The lounge: One of the downfalls of living in the lounge is that there is no privacy. Or family space. For example, when he transfers to the bathroom he completely naked, and is unable to clothe himself. We would like to create some sort of dignity in his life still... Shame when visitors come over and he has to do all this in our only public space in the house. (1 bathroom, 1 lounge, etc in our house) So we have to be creative and solve this problem.... some ideas we have come up with; 

1. Remove the wall between the lounge and small office and replace it with bifold doors that we can close when he needs some privacy.  
2. Turn the garage into his new bedroom, replace the roller door and side windows with ranch sliders so he can access the house and the driveway with ease. He is keen as on this idea as it gives him ample space to play with. 

Of course, all of these home modifications are dependent on money and approval from the LAC Property Committee (we live in a school rental!). And, most scary for me, if we get it wrong and it doesn't work for him and we've spent the money...  ??

So many decisions... 

Lord, give us wisdom. Guide us.