Josh had his regular fortnightly visit from his therapist from RIDBC. Josh was the most alert and therefore responsive he has been so far with her; it was so good to see. As usual, at the end, she gave us a couple of things to try, or to work on until her next visit. Basically just getting Josh to "track" an object, and waiting for a response from him before doing something.
Next, we took off to the hospital to check out another wheelchair. The last one we looked at, the Panther, folded in half, but is too heavy; I could barely lift it. I don't think actually that it was the weight, it was more the awkwardness of trying to lift it. The one we saw today also folds, and apparently weighs 22kg without the seat. I could lift it, but only to a certain point. It was also quite rickety, and the OT and PT suggested that the more that folds, or can come apart etc, the more that can go wrong with it. Looks like the recommendation will be the initial chair we looked at from one company (cant remember the name), with a particular headrest from another company. Still a couple of months away anyhow, but the chair is also funded which is fab. The OT also had new day splints made up for his hands, so they look fine, and easy to pop on, to keep his fingers free, and thumb more extended.
After that Joshy's physiotherapist checked his feet. Josh had a pressure sore on one of his heels from the other day; I put his casts on with socks, and normally I put them on without. I think that may have caused it. The PT decided to delay re-casting his feet for 2 weeks, because she was also happy that Josh still had good range in both his feet.
She then sent us off to have his hips x-rayed, to note any changes, and later, after the results come through, advise on a management plan for stretching them etc.
Later we met with a Respiratory Doctor, who we hadn't seen before. I liked him; he had a clear and thorough explanation and description for things. He took a throat swab from Josh, and requested that the PT takes a sputum sample the next time we see her, because he is concerned that Josh has a lingering infection. He prescribe a broad spectrum antibiotic until we know for sure. Because of his cold, its been a bit hard to tell whether the Artane medication is working to help with Joshy's secretions; he's currently getting 2 x 2mg tablets in the morning, and 1 x 2mg in the afternoon. He suggested we try using Hypertonic Saline in addition to Artane. This is supposed to irritate the lining, making Josh cough, thereby clearing his chest to allow easier breathing. It's given via a nebuliser. The doctor sent us down to another clinic to do a short trial using both Ventolin and hypertonic saline while monitoring his stats, particularly Joshy's oxygen levels, to make sure he would tolerate it. He was fine.
This is Josh receiving the HS.
We have also booked Josh in for a sleep study in the next few months to monitor his oxygen levels. The Doctor noted Josh has large tonsils and a swollen uvula (the dangly bit at the back of the throat), which I wouldn't doubt, because sometimes, try as we may to not get it, it sometimes gets suctioned! Ick!
I also had a chat with the Biomedical team, and the Appliance Centre (the place where you hire equipment through the hospital) to see if the suction units come any smaller. But no, they don't.
There are only certain meds that can be purchased through the hospital pharmacy, and since I don't own a nebuliser, I hired it for the trial period of using HS (2 weeks) from our local pharmacy. As I returned to my car, the door handle broke. So now, I use the key to unlock the door, and then have to climb through one of the other doors to either reach over to open the driver door, or just climb over the seat in to the drivers seat! Grrr! Silly car is falling apart!
We didn't get home til 5.30! What a day!
Paris' dad took her to the Doctors, who advised that her "thing" is just viral, and so should rest plenty and eat and drink well. That was easy.
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