In a fog…

The past 2 months have been tough. As if the move and starting new jobs wasn’t enough, watching Jake suffer trumps everything. If it was just his eye healing from a ruptured cornea and surgery, it would be plenty. The membranes are still being absorbed leaving Jake’s vision blocked. It looks good. Both eyes look good… Dr. Rockstar inserted punctual plugs today. The eyes had recovered from the cauterization, but she wants the eyes to retain the tears. Less irritation. The eye he can see from is constantly sensitive to light. He has 20/20 vision, but it’s often blurry. It leaves him bored and frustrated. She believes he won’t need a corneal transplant now.  The prednisone has wreaked havoc on his body. He is extremely bloated and swollen. He has lost all muscle tone.  It is uncomfortable. They have added, stopped and changed his medicine so much. We spent last weekend at my dad’s. Jake was confused and couldn’t put his thoughts into sentences. We were in communication with his doctor, and we agreed avoiding the ER was best. Sunday night I gave him a medicine that had been stopped abruptly. Scientifically it should have been out of his system, but the addiction was not. Lyrica can be nasty, but once I started it again, Jake was back cognitively. The medicines he is taking all have their nasty side effects, it’s hard to tell what is causing what side effect. Today I questioned one of his inhalers. The doctor was agitated because he couldn’t match the name brand with the generic-he was confused. He had stopped one inhaler a month ago because it was too much steroids. Today he insited he use the fluticasone inhaler because it is a steroid, but he called in the wrong one two days ago. It isn’t called fluticasone, it is called Flovent.  He tried to turn it back on me. From now on, let’s use generic names. Jake was out, the pharmacy sent a refill request, he approved it. Not my fault, but thank God I questioned it. THEN he failed to call in the correct one this evening. I miss talking to Dr. S. on a regular basis. We saw him today and discussed all of Jake’s meds. Even though he doesn’t prescribe them, he considers them all. I’m glad he [the prescribing doctor] stopped the antifungal. It makes the 80 mg of methylprednisolone more like 120 mg. That dose is very dangerous. The prescribing doctor had him start and stop the antifungal 3 times the past 2 months. Dr. S. continued,  I agree with your thoughts that the Lyrica withdrawal caused the confusion. We discussed safely tapering the dosage. It scares me that his prescribing doctor questioned my medicine managing skills. I have called and checked and re-checked his medication many times. The problem is that I don’t know if the nurse even relays the message, and I know without a doubt the doctor doesn’t listen to me.  Today he took so long, Jake fell sound asleep. Jake sat up but was still groggy when the doctor declared,  “I don’t think you are doing enough to get better.” Ok, had we not just established the concoction of very powerful medications were making him feel terrible? As bad as the chemotherapy, I would venture to say. I was mad enough when we left, I vented to people all the way from Indy to Taylorville.  I am thankful the medicines haven’t caused more devastating results. This is not the first time Jake’s mental status and health have been affected by his prescription medicine. Hopefully we will continue to taper and the graft vs host will subside…. 

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