Houston chronicles

I'm back from Houston! My quick one-day trip turned into a two-day trip, so I was there Wednesday and Thursday. Late Monday night I got an automated email from MD Anderson with my schedule for appointments on Thursday. What? I have appointments on Thursday? No one told me! So anyway, a quick change of plans and it all worked out. The nurse from MD Anderson did call the next day to tell me about the appointments, so all is forgiven. Actually, I wasn't upset at all, just glad to get these things out of the way!
Ben was going to go with me on Wednesday since we thought it was just a one-day trip, but instead he stayed home with the boys and I went out there by myself. I finished my steroid course on Tuesday and I was already much better-- able to drive and walk short distances, so I figured I would be ok by myself.
So I left Wednesday morning and got into Houston just before noon, in time for my 12:00 appointment with the neurologist. I had to have a lumbar puncture (a nice way to say "spinal tap," even though spinal tap is actually a much better description of the actual procedure). In MS, there is a classic pattern of protein banding in the cerebral-spinal fluid, and the study protocol requires these results, just for completeness. I've never had a spinal tap before, since my other MS symptoms and diagnostic tests have been so conclusive. The procedure is similar to having an epidural placed-- I sat on the exam table leaning over against a table. The doctor inserted the needle in the lower back, below where the spinal cord ends so there's no risk of nicking it. Then the spinal fluid just dripped through the needle and the doctor collected it in a couple of tubes. It really is like tapping the sap out of a tree, which is why "spinal tap" is a better term than "lumbar puncture." The needle wasn't painful, but as the procedure went along I got a really terrible headache. Apparently this is pretty common, and is just the result of the loss of fluid. As soon as he got all the fluid (32 cc's) and took out the needle and cleaned up my back, I could lay down and the headache immediately went away. I guess sitting up, gravity kept the reduced amount of CSF in the lower part of my back, leaving my brain a little low, which is what causes the headache, and once I lay down, the fluid could get back up to my brain. The doctor told me your body replaces all the CSF 5 times a day, so it doesn't take long to replenish what was lost. I lay there for 20 minutes or so, another nurse came in and took blood, and then that was it! I don't have to go back to that office until after the transplant.
I went straight from Baylor to Texas Children's Hospital for the MRI. I got there at 3:00 and my appointment wasn't until 4:45, so I had a while. I don't like Children's Hospitals. They are too sad for me. I sat there in the waiting room watching all the parents with their kids waiting for an MRI and just wondered what all of their stories were. It did help to remind me, though, how grateful I am that it is ME going through this stuff, and not one of my boys. It would be a million times harder if it were one of my children. The MRI machine was decorated with Mickey Mouse, though, which was a lot cuter than any of the other MRI machines I've been in!
The MRI itself was fine. It was just a brain MRI, so it took just a little over an hour. Spine MRI's take a lot longer. The only bad part was placing the IV. You have to get an IV because half-way through they inject you with this contrast dye stuff. I had just taken out my IV from the steroids the night before! I should have just kept it in. Anyway, I don't mind getting IV's, I'm pretty used to it, but on the first attempt the nurse "blew out" the vein. I'm not sure exactly what that means, but it HURT. And then I had to get another one. And the next day I had to get more blood drawn, so in the course of 48 hours I had 5 holes poked in my arms. Waaahhh...
I stayed the night in the Sheraton which was nice! I got a pretty good deal on Hotels.com. I am tired of staying in cheaper, crummier motels, and I figured if I have to go out there all by myself and do all this unpleasant stuff, I'm going to treat myself and stay in a nicer hotel! And it was nice, I'll probably stay there again. And it was really only like $30 more than the crummy Days Inn, so not too bad.
Thursday I had an appointment for lab work (i.e. blood) at 8:15, so I was at MD Anderson bright and early. Then I had an EKG at 9:00. Last time I did these tests, the Cardiovascular center was not busy, so they just squeezed all my appointments in together and I was done in like an hour. But yesterday was really busy (getting everything done before the long weekend), so no such luck. My next appointment wasn't until 1:00, so I went downstairs to this nice waiting area with couches and chairs and tried to sleep a little. I went back up to the waiting room at 12:30, and told the lady at the desk I was back. She was a little confused because I had already checked in, but I just wanted her to know I was back in the waiting room!! And then I waited and waited and waited and waited. Finally at 2:15 (remember, my appointment was at 1:00), after seeing a bunch of people who got there AFTER me, getting called in BEFORE me, I went up to the desk again to ask where I was on the list. The lady was confused and went back and talked with some people and then assured me I was "one of the next patients." So then I waited for 25 more minutes. Finally I get called back for the echo cardiogram. The technician asks if I've already done the respiratory test. No, I tell her, my echo was supposed to be at 1:00, and the respiratory test was supposed to be at 2:00, but I haven't even done the echo yet. She acts really confused too, and said that there was a note on my chart saying I'd already done the respiratory test. What? No, I hadn't! Then we pass by the white board in the hall where they have all the patients names, and I see a note next to my name which said, "Not in waiting room." That really ticked me off. What, I'm supposed to wait in that stupid tiny waiting room for FOUR HOURS?? Of course I wasn't in the waiting room. But I told them as soon as I got back, and I was back 30 minutes BEFORE my scheduled appointment! Anyway, I guess they had an earlier slot available, and called me, but I wasn't there, and then just crossed me off the list, in spite of the fact that I had an appointment already set at 1:00. Anyway, the echo tech was really nice and she made sure I got right into the respiratory place after the echo. So I guess I could have been done earlier after all. Next time I'll be sure to ask if there is any chance of getting in to an earlier slot, and if so, I won't leave the waiting area!
So I finally got done about 3:45 and was on my way home. But traffic leaving Houston was horrible. I didn't even get past the tollway (runs in a big loop around Houston) until 5:30. I never want to live in Houston, I've never driven out of there, at any time of day, when the traffic hasn't been bad. So a 3 hour drive back turned into a 4 1/2 hour drive back, but I did eventually get home.
Ben had taken care of things nicely. The house was cleaned up, the boys were happy, it was all good. The boys were happy to see me, which was very heart-warming.
So today was Mosey's last day of preschool. He came home with an alligator hat that they made out of green construction paper ("see you later alligator") and he hasn't taken it off all afternoon. It's been really HOT here (upper 90's), and I guess Mosey spent most of the last two days in the pool, and this afternoon was no exception. I just can't stay out there for too long before the heat gets to me, so I have to sit in the couch and keep my eye on him through the kitchen window. He's getting tall enough that he can actually touch the bottom of the pool, and he wears this floaty half-wet suit thingy so he's pretty safe, but still. I hope he learns to swim this summer.
Joseph lost another tooth last week. So he has three in a row missing on the top. He's so cute and funny-looking. His two front teeth are just starting to come in, so he won't be toothless for too much longer. It's a little sad that he's getting those big grown-up teeth. Kids really lose that baby look once the adult top teeth come in, I think. Brigham's still got all his top baby teeth, though. They're getting so tall, though. Even just being gone for 2 days, I come back and it hits me how BIG my boys are. Brigham came and curled up on my lap, and he hardly fits anymore!
Ok, that pretty much chronicles the past couple of days. I haven't taken any pictures in a few weeks, so I'll try to take some this weekend to post.