We have been rolling along, but the last few weeks have kept us on our toes. Sam has had moderately high blood sugars during the day but enough lows to keep me from changing his 24 hour insulin he takes before bed. Last Saturday, he complained his stomach hurt all day. He would get up to play with the dogs or his Legos and end up back on the couch. Finally, at about 8:30 or 9:00, I thought what would Carla say if I called her with his symptoms? I immediately thought she'd ask if I had checked him for ketones. Nope! His blood sugar had not been that high. So we checked and found they were really bad. So there was another bit of time to get them gone before we could go to bed. It usually entails drinking a lot of Gatorade and water and checking every hour to make sure they are getting better and blood sugars are not worse! We got him settled down within a couple of hours, thankfully. But we still battled them off and on for a week. He had two places on his leg that we treated with antibiotics, in case they were something worse than staph; so that could have affected him - fighting infection. He seemed better on Saturday after having some weird numbers on Thursday and Friday. He seems better still. But I did go ahead and change his Lantus last night (24 hour insulin) and sent him to bed at a good number. Not long after, I was reading in bed; and he slipped in to show me a 42 on his meter! So I rolled back out of bed and fed him every snack he wanted until 45 minutes went by, and we had a reading in the 140's. I slept through my 1:15 am alarm and checked him around 4:00 am. He was a tiny bit high, but at night that is more of a relief after lows!
We went to an outside wedding near Charlotte on Saturday. I kept telling Andrew and Sam to drink water and stay in the shade. The actual wedding was out in the sun with no shade, but it was not long. So even though it was very hot, they were fanning themselves and staying under an umbrella or the open shelter. After the maid of honor gave her pages long toast, Andrew came from the table beside me and asked if I could go and see if I had emergency meds in the car "just in case." I looked at him and asked if he was okay. Then Pete looked at him and jumped up. Fortunately, we were at the end of the shelter and could get him away from the reception and in front of the catering van parked in the grass. I was torn between running to the car (parked quite a bit away) and staying but knew I needed to check on the meds, so I started running. And praying. I am not in good shape at all and am working on it, but I will need to work faster and harder now. I was able to run down the hill and then walk fast. As I got close to my car, Pop came with a golf cart and helped me search the car. I felt sure the medicine was under the seat, but I could not find it. So I got into the car and drove it up to the shelter to help. By the time I got back, the seizure was over and sirens were coming our way. Sam helped direct the first responders to Andrew (for the second time in a month). They were so kind and helpful and were great checking on Andrew. There were two fire response trucks and an ambulance. Since we were at a winery, I am not sure what they thought they might find. But we were thankful for them and a recent ASU nursing grad. She and her boyfriend sat at the end of the aisle beside Pete, and they had talked before the wedding. She kept an eye on Andrew and even noticed the cut on his head when they sat him up. Not until we got him situated and then put him in the air conditioned car to hurry home did I know that Pete was really scared with this one too. He watched Andrew go through it and come out of it without any medical help. And it was tough. Sometimes emergency meds don't kick in for a minute or so. But it seems like 10 minutes when you are watching him not breathing. It is so so scary.
We loaded up. Andrew was still so polite. He told his cousin he was sorry he disrupted his big wedding day. His cousin went and got him some water and told him not to worry - that he understood. And then we just went on.
The emergency people told us what to do if he had another on the way home. To keep driving and call 911 and let them tell us to stop or to meet them somewhere. That was good to know. We did not have any problems on the way home, as we hurried home. He slept in my spot again, and he did not have any problems during the night.
Yesterday, Andrew could not make Sunday School; but he was at church doing the sound. We got there a few minutes before church started, and some who knew about his Saturday were happily surprised to see him. I felt good knowing he wanted to be in church.
Since today is Memorial Day, I guess I will have to start all of my inquiries tomorrow. Something is off, is not right. Whether it's still getting his thyroid medicine straightened out (but it's been almost four weeks now, since we corrected that) or getting a new MRI (he has not had one in a while) or something else. He has four specialist appointments in June, so we need to gather all of the information we can before those appointments. We just need lots of prayers for guidance.
Pete started to fuss at Andrew a little bit about not telling us he thought he was going to have a seizure. He wants him to not ask for medicine but to tell us he feels like a seizure is coming. But I told Pete that he has felt bad before and not had one. Andrew and I were on the interstate coming home from UT Knoxville around midnight after he ran a 10,000 and he felt weird. We were on a dark stretch with no exits for a while. Andrew put his medicine on the dash and a blanket on his lap. And we had a plan that if he had a seizure, I would pull over and call 911 on speaker and pull him out and put him on the blanket. I drove as fast as I safely could, and I prayed. Very hard. And then the feeling passed. And he did not have one. So we are thankful when he feels one coming on but are so thankful when they don't get him.
Once again, we are thankful that he is okay. He could have these when we are not there to help. We give him medicine when we can and turn him on his side and talk to him (and sometimes yell to try to get him back) and pray and pray and pray for it to let up and go away. It's hard, but I would never trade that for him being by himself. God is good.
Please pray for Andrew. And for us to seek out what he needs. Thanks so much.
"Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost." Romans 15:13
This verse has been taped to my computer for years. I need to read it often.
UPDATE: I was in touch with Duke today. Andrew has a July 31 appointment with a neurologist who specializes in difficult to control seizures and autoimmune issues. He is also on a waiting list in case an earlier appointment becomes available. Thanks again for praying.
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