Yesterday, a rather serious, bespectacled OT showed up to take a look at Bob's shoulder and neck problems. Her conclusion is that Bob has a nerve impingement in his shoulder caused by either a "brachial plexus injury or thoracic outlet syndrome" which is "possibly caused by a kyphosis deformity (in process) due to repetitve positioning concerns." Those are her words.
And don't ask me what the heck all that means! Though the one thing I do know is the "repetitive positioning concern" is that Bob must sleep with the head of his bed elevated due to the all night feeding pump. And he's been sleeping in that position for over a year.... And when he sleeps, his head leans to the left and his chin rests on his chest and this is exactly the position his head is now "stuck" in....
So it does make sense. More sense than the gloom-and-doom neuro doc's diagnosis of CIDP.
The OT is coming back tomorrow to begin stretching/strengthening exercises with Bob's neck and shoulder. Which sounds terribly painful, if you ask me. But fingers crossed and I do hope this will help him.
And now I have to figure out a way to run that feeding pump earlier in the evening and once again early in the morning so that Bob can have some "down time" lying flat at night... I just consulted with an infusion nurse about flow rates on that pump and cutting his dosage in half to split it up and I have a plan to try tonight---which is going to be rather a pain in the butt, as I will have to flush out the bag to be able to reuse it, but what else can I do?
Meanwhile, it's been a stressful couple of weeks here at The Pink House. Bob has had a runny nose for about two months now and I've already consulted two different doctors about it, the first one told me it was allergies and the second (just three weeks ago) told me not to worry unless the mucous/phlegm turns colors and if that happened he'd order an antibiotic, and just this weekend Bob coughed up gobs of brown stuff so on Monday I called the doctor's office and told them the situation and asked if the doc could order an antibiotic, and a while later the nurse calls and tells me an order for an antibiotic has been sent to the pharmacy. Later on, I call the pharmacy and the automated message tells me we have one prescription ready to be picked up, so I dash over there to get it, only to find that the pharmacist has put a hold on it because there is an interaction between that drug and Bob's warfarin and they are waiting for the doctor to call in a different kind of antibiotic. So I go back home and the nurse calls and tells me that now the doctor wants to see Bob back in office! Of course, I argue but noooo, we have to go back even though he was just there three weeks ago and just had a chest x-ray which was clear, we have to go back so the doctor can see Bob---so we go tomorrow. I tell you, these people do not understand how difficult it is to travel with a severely disabled person in a wheelchair...
On top of that, this same doctor's office totally screwed up Bob's home draw. "Home draw" is the term used for when a lab technician comes to your house to draw your blood. Bob has to have monthly blood tests for his blood thickness and having a home draw is a incredible blessing. Before anyone told me about home draws, I was pushing Bob in his wheelchair six blocks to the nearest lab in 90 degree heat and one day, one of the technicians at the lab (seeing me all sweaty!) asked why the doctor hadn't ordered a home draw. And that's when I found out there was such a thing. Well, since then, we have had the luxury of a technician coming to the house when just this month, no technician showed up, so I called the lab and asked what happened only to be told the doctor's office CANCELLED IT. So I call the doctor's office up and they tell me that someone named Angela (who I have never met) cancelled it because "Robert should come in to the office for his monthly blood test". GAAAA! So after a few more phone calls, and a lot of arguing with various people, I got them to set up another home draw, but they changed companies on me, which meant I couldn't use the second lab slip (from a different doctor) and had to push Bob six blocks to the lab for that doctor's test and then when the technician from the new company finally arrived, I find out some idiot at the doctor's office ordered the blood test WEEKLY instead of monthly which was another big mess to fix.
Meanwhile, I called around and found a place that carried the "Headmaster" neck brace that Bob's neuro doc ordered. At least, they told me they had it in stock when I called. So I get Bob all already, dressed and shaved and hair washed (and that's another fiasco, imagine trying to wash his hair with his head in this position) and we take the wheelchair transport to this place and when we get there the sales guy tells me he has never heard of a Headmaster neck brace. So, since we are there, I ask him what do they have in stock and he brings out several neck braces, all in pieces and sealed up in plastic bags. So I ask if we can actually see one of these, you know, put to together and if Bob could try it on, but he tells me that HE CANNOT OPEN THE BAG UNLESS WE BUY IT. What is with that? So that was a big wasted trip. He's going to order the Headmaster and call me when it comes in. (I wonder if we'll be able to try it on before buying it....)
And we're still waiting on the botox injection insurance approval which is taking forever. And Bob's arm is still giving him a lot of pain.
So if I sound completely stressed out, it's because lately, there are days I just do not even want to get out of bed.... And I ask you, is it just me? or are people purposely trying to make my life harder?