Yesterday ended for us at about midnight. That's when Adam finally went to sleep....4 hours after he went to bed. He was good and patient and sometimes laughing...watching worship and the annoying ads on YouTube....
Today began at 5:30 a.m. No t.v. allowed. He's descending into whining now as I sit typing. He will probably take a nap soon. It's 7:30 a.m.
Adam has been having all kinds of difficulties lately, which means I have too. Mine are easier...I just have to deal with doctors and meds for him, and trying to get him back on an even keel; no small task, but not as bad as the pain and anxiety he deals with every day.
This season has been unlike the ones in the past......Adam's body is changing and I can't figure out what's going on. His doctors don't seem to be aware of this and just do the same old things they always do. Sometimes that amounts to nothing. That's what's been happening right now anyway. I put a call in to his neurologist for help with med changes. No call back. Thursday and Friday came and went. I needed to make a change so I went ahead and did it. Added back a med we were trying to remove because of side effects. Removing the last dose did not go well, and I needed help with putting him back on it and changing out the new doses of another one. No help, so I removed one of the added doses. He seemed to do fine with it, but his headaches were still bad and getting worse. I called the neurologist's office again on Monday. No call back.
I called the neurosurgeon's office and asked to speak with Adam's doctor regarding the increasing headaches and irritability. They gave me an appointment for two weeks later. I asked if the doctor could please call me as I needed some advice NOW. No call back. Adam's symptoms increased to the point neither of us could deal with them any more, so off to the E.R. we went. He had increasing pain in multiple areas and increasing behaviors that we couldn't help him with; I was having increasing anger at the doctors for being so irresponsible and complete frustration over being unable to help Adam. Not a good combination.
The E.R. trip was the usual nightmare; start an i.v., get blood work done, wait for X-rays and CT scans to be done. Nothing shows anything. Blood work is ok and the things that are off are unrelated to this issue. Follow up with G.I.doctor. We already are, thank you. "Not all headaches are shunt headaches." We know this, thank you very much. Except that the guidance for a person with a shunt is very simply, "It's always the shunt." They tell you this from the time the shunt is placed because it almost always IS the shunt, and you can't afford to miss it. The cost is too high. Unfortunately for Adam, his shunt is often blocked and the scans show normal ventricles. (Where the fluid builds up in the brain.) The last surgery to relieve this found no issue; the shunt was NOT blocked. This has never happened before, and now I am at a loss as to when to push for surgery. So is his neurosurgeon. It's a wait and see game. Did I mention that we waited with headache issues for 10 days? The storms coming and going over the last few weeks wreak havoc with his head and shunt. The low barometric pressures increase the pressure in his head. It can be very difficult to determine what's going on with Adam. So anyway, as far as the tests show, Adam is safe for now. His condition at this time is not life threatening so nothing needs to be done. His quality of life is terrible, but since the last surgery wasn't needed, the risk of surgery is worse than the risk of no surgery. The proverbial "between a rock and a hard place". And by the way, Adam's surgeon was not on call, and I still haven't heard back from him.
Yesterday I called the neurologist again, but I spoke to someone at the front desk instead of following procedure and leaving a voice mail. I told the young man who answered the phone that I needed to hear from the doctor today or I was going to fire him. I told him that maybe it's the phone system that I and others have been complaining about for a long time, but that I didn't care if it was that because if I can't get hold of the doctor when I need him, I will find someone else who can help us. The person was very understanding and told me that the staff has also been complaining about the phones, and he took down information and said he would give it to the doctor. I got a call back after hours. We now have a plan to adjust Adam's meds over time and see how he does. The doctor told me the there is no record of me calling. I told him I left voice mail TWICE. He gave me his email address for future needs.
So the problem now is that I have lost my peace and I am in an angry place. There is too much happening in our family right now, much of which is too personal for another member and I will not discuss in a public forum. This person is important to us, we love them, and we respect their desire for privacy.
And I have chiggers. Lots of them. I called three doctors who were all not in and then went to urgent care. I was the sixth one that morning. I guess September of 2020 was CHIGGERS. Who knew?
Today I am going to try to make the space to spend time with the LORD and get back to my center of peace. I can't stay in this angry place much longer. I keep seeing prophetic postings of the wonderful changes that are here, are coming, are just ahead, and they just make me angrier. I just can't see it. And I'll leave it right there.
Thanks for reading today. Many blessings to you and yours. And mine. God is good, all the time. Even when I'm in a bad mood. He still stops by, even when I'm not paying attention. He's just that loving, just that caring, just the never changing always the same always steadfast One.
