May 1 Colin finally began to have fewer coughing fits, felt better. Now that the cold was over, his bowels began to work again. The pain was still an issue. The next hurdle to jump was the pharmacy. First they refused to fill his sleeping meds since the 2 he took at night were from 2 different doctors. A third was used to help spasms, but in the same class of drugs. Again, a different doctor. Red flags went up, one was cancelled even though he is not supposed to stop any of them cold turkey. The others were not filled. He had 1 to get him though a couple days. We made an appointment with his primary doctor and took him in on the 2nd.
Just as well since the new caretaker A, had asked for the weekend off and I had forgotten. I had to take the day off Friday the 2nd so I was able to take Colin in to his appointment.
Normally D could fill in, but D had his own family health issues to deal with. It is those very issues that made us cancel our plans to go to Greece. D has far too much on his plate for us to go galivanting around.
The doctor went over meds. We agreed we needed to have a single doctor prescribe meds. She called in the prescription and the pharmacy called when we got home. Apparently Walgreens and CVS are no longer contracted with our health insurance. Not only will we pay for his out of pocket, I have to transfer all his prescriptions somewhere else.
To do quickly that we needed new prescriptions written and delivered to the new pharmacy. It took 2 days to get the most urgent filled. After we got all his meds transferred, the insurance starts to call about the changes. Figures.
During this month we finished his ric-shaw for him to increase his shoulder and arm strength, plus his desk. He made his first post to his blog page. The formatting is off and it took him almost 2 hours, but he did it. One day we will get the formatting fixed.
He was able to use the stander regularly again and has increased the weight we put in the ric-shaw box to 1.5 lbs.
He started with a new Physical therapist, one who specializes in his type of injury. She actually trained under his PT from the hospital. She showed him some stretches for his sides that we can do at home on his mat table. We are teaching A how to work with him.
The down side for his new therapist, $48 out of pocket per visit. Insurance only covers 70% and they do not accept Medi-Cal. Mandated 2 visits per week.We had other surprise costs this month.
His alternating pressure mattress pump stopped working. I went in one morning and the mattress was fully inflated, not alternating pressure. I had D call the service place and they sent someone up to look at it. This is when we were told something completely different than what was communicated when the bed was delivered.
We thought the bed was rented for a year, then he owned it. Apparently, the insurance would not rent it, so purchased it. Medi-Cal refused to pay the 30% saying the bed was not a medical necessity. No one ever told us any of this. We owed over $1400.00 for his bed.
I do not understand Medi-Cal at all. The only paper I ever receive from them is a right to appeal a decision and the process to do it. I do not, however, get information on what is not being paid for. Not a single detail. I have no number to call, no case worker and I have no idea how to find out without using up an entire day. I barely have an extra hour and that is always after 5 pm. I worry what is going to happen when the insurance kicks him off at 26. WTF are we going to do to get him the care he needs? I think we will have to fight for everything through Medi-Cal and pay for insurance out of pocket.
On his health, we got good news from his Urologist. His bladder stones are decreasing in size. So we know how to take care of his bladder. LOTS of water, OJ and cranberry supplements. He also had a check up with his orthopedist for his hip. The HO has not increased in size. It is still extra bone growth on his hip and has matured into solid bone, but it is the same size. All good news.
He still has pain issues and wakes during the night regularly. He sleeps through the night about 5-6 nights each month. His pain wakes him, the meds he is prescribed to take in the middle of the night don’t always work. I get up several times to start the TV, cover or adjust him. He then sleeps in the morning after his pain meds can be taken. Too many days he is exhausted from lack of sleep, as am I. But there is nothing we can do.
He has the name of the doctor for the spinal pump. He just has to make the call. Several times he has been ready. He hangs in there, doing therapy in pain, falling into the pain coma. Every day. His fear is the sensations will go away and he will be numb. He thinks the pain is a positive thing, but it sucks regardless.
He has been rubbing his palms on different textures and now he has normal sensation there. He still works on moving his fingers every day. We rub his legs and feet when we do his ROM. He says he can tell where his feet are until his neuropathy turns his lower extremities into one “big leg of fire”. The he cannot envision his feet anymore.
May was better than April. We had good news and planted a small container garden. He felt better and was able to begin different therapy. Costs are increasing, the van is acting up again (no instrument panel, rattling noises, brakes had to be replaced) but we can only deal with so much at a time.
I am off for the summer next month, D will take some time off , and work outside is going well. By next month we should have 2 sheds up, a bunch of things moved and space for the van to be parked in the shade right next to Colin’s entrance. Hopefully, it will get better.