Here’s another pre-written post. Mike’s back getting a test done and apparently this part of the clinic has no wireless. Sad!
Yesterday we got to Mayo with just one appointment on our schedule (neurologist), then we were supposed stop back by the GI’s desk to see what he had scheduled for us. When we got to the neurologist, the reprinted our schedule and it had more stuff on it.
The neurologist rocked! We don’t even feel like it’s worth it to go back to McFarland anymore. Everyone here has looked at him once and had multiple ideas of tests to try, or meds to try. We saw Dr. Singer, a German guy who was so helpful. He did a very thorough evaluation of Mike’s hands and feet. (We were sent to him for the neuropathy – nerve damage in his feet that makes it so painful for him to walk.) He checked reflexes and how well he could feel stuff (hot, cold, pointy, dull, etc.). As he left for Mike to change he said, “Well, I think we can help you.” After seeing him for like half an hour. So far everyone has seemed like they don’t know what they’re doing and eventually give up on him.
We ended up leaving with 2 or 3 tests to check our how bad his neuropathy is and how well the nerves actually work. Dr. Singer said Mike’s neuropathy isn’t as bad as previous doctors had thought. This doesn’t mean he’s not in as much pain. He explained it like a tv. If the cable is kinked even a little bit, it can make the screen super static-y. It the cable is just unplugged, you have no tv and you’re fine. So if we apply that, if Mike’s nerves are “kinked” even just a bit, he can still be in tons of pain. But if they were totally blocked, he’s be numb (I’m guessing on the second part!). That was a good thing, though. So he already completed his lovely 24 hour urine sample in which he got to carry a jug around with him everywhere. He also had labs drawn right after that appointment.
Then we headed to see Dr. Kudva (endocrinologist/diabetic dr) again. This was added on since the day before when we left. We waited forever and a day, and go figure he walks in after 45 minutes when I finally decide to pull out my lunchable and start chowing. He didn’t do or say much, other than he wanted to do continuous glucose monitoring the rest of the time we’re here. Also, he is very nervous about the tube site and it getting infected if Mike were to have a transplant, especially because of the anti-rejection drugs. He made it seem like it may be a deterrant to him. We told him Mike would be willing to get rid of it in order to get the transplant. It just makes sense, thinking long term. He said he doesn’t want to take it away if Mike needs it. According to him (which I haven’t heard from any other dr. and need to research a bit) gastroparesis (the stomach nerve damage that gives Mike troubles) lessens over time. He said if Mike doesn’t get approved for the pancreas because of the tube, the thing to do would be wait until it lessens enough to take it out, then try again. Stink! We didn’t like that answer.
Dr. Kudva then sent us next door to a nurse (I think) to ge the continuous glucose monitoring set up. This was the only part so far where I have liked Ames better. She had no clue what she was doing and it took forever and multiple tries to sync it! (Barb in diabetic education is so much better.) It’s a small site on his stomach, kind of like an insulin pump site. It’s about the size of a quarter, but thicker. It checks his glucose level every 5 minutes. They’re trying to see how fast his sugars go up and down and what they’re like overnight when he’s not testing. He still has to prick his finger a bunch and chart it to compare. The site in his stomach goes into tissue, which isn’t as accurate as blood. Dr. Kudva said it had a 15% error either way and it lags behind the blood readings a bit.
After that we stopped by GI like we were supposed to do after our first appointment, but never had time to. We didn’t really even need to though. They had added tests and they were already on our newest schedule. We seem to get a new printout at each appointment.
We decided to try to get in early for a test. We have stuff scheduled today and tomorrow, then next friday (Oct. 2). We really don’t want to have to come back. We waited around there for about an hour and a half, but they couldn’t fit us in. Se we went back “home” and rested a bit.
Mandi and her boys drove over (they’re just under 2 hours away) which was awesome! Mike had been getting down yesterday, so I think it was good to have some little boy distraction. And they’re so cute. We hung out with them all evening, then they had to go. Sad! (Thanks for the gum you left, Mandi! It’s delish and I’m chewing it now. Hope you didn’t mean to take it with you. Hehe!)
Today we got up and drove around the ramp forever, slowly going up to 8 (the top) and back down to find a spot. We were a bit late. We dropped off our lovely jug of sample on the way to Mike’s test and now he’s back and I’m killing time. He’s back getting sensory testing done. I’m assuming on his legs. Oh! Dr. Singer also gave him a script for some cream for his feet. It’s pain killers and numbing meds mixed together that he rubs on his feet twice a day. If it works, he can get off the morphine. It also has no side effects! It’s just silly to be on pain killers when it’s such a small part of his body he’s trying to help with them. Plus, they can make stomach issues worse with nausea and such. He was also talking about a drug we haven’t tried. (Remron I think. Just for you, Mother) It’s technically an antidepressand, but really helps with nausea and has a side effect of weight gain, which wouldn’t be bad. (P.S. Mike’s gained about 15 lbs in the not quite 2 months since he got out of the hospital.)
So after this test he’s in, I think we’ll try to wait and get into the Oct. 2 test early again. Then later this afternoon he has a colon test. Won’t go into detail on that one. After that he meets with Dr. Szarka (GI) again. Tomorrow he has another leg test in the morning, then an appointment with Dr. Kudva in the late afternoon. If we don’t get in early for that test today, we’ll probably hang out most of tomorrow trying to get in.
In other news, the couple we’re staying with is having a neighborhood party at their house tonight. Also, there’s a new CSI on. That’s about all I have. My Mike is in a better mood today, after realizing if he doesn’t get the transplant, it’s in God’s hands and we need to pray for his will. I like the better mood and the right heart. And the Mike. And now I’m going to post this (internet magically appeared) and mess around online.
One more thing. My son makes me sad. He’s having too much fun to talk to me on the phone for more than 30 seconds. I suppose it’s a good thing he likes being with his Nana and Grandma, but it makes me sad! Day before yesterday our conversation went a bit like this:
C: Did you go to the library?
K: No! I not at the library.
And that’s about all. Apparently the had just left the library and he was with Grandma watching them make pizzas at Papa Murphy’s. More entertaining than Mom.
The day before?
C: Hi Ki!
K: This Mommy?
C: Yeah, this is Mommy.
K: I playing. Bye!
Little skunk. Oh well. I don’t have to worry about him at all. That’s nice. We have awesome moms!