thomas and mari update

So, we’re home. Yesterday was a long day. I didn’t sleep well the night before, and gave up around 5am; I got up at 5:40. We hit the road and were at the hospital at 8am – an hour early, but it was to our advantage, really. At the elevator in the parking garage, we all tore off a “reminder slip” – so cool they have those – so we would remember where we’d parked; that’s the biggest, deepest parking garage I’ve ever been in!

On the main concourse, Jan, David, and Thomas went around to Nephrology, and Tayler and I went to radiology. Because it was so early, Tayler and I went straight back. Unfortunately, I didn’t get to have my CT angiogram due to my iodine/seafood allergy. The radiologist said someone should have spoken with me about that when the appointment was made. She did, however, go back to talk to someone about me taking a mega-dose of Benadryl (which they’ve had people do before) and seeing if I could get squeezed into an appointment later in the day. Unfortunately, the only other opening they had yesterday was for 10pm – which, if we’d been staying over until today, that wouldn’t have been a problem. 😦 So, she wrote me down a list of instructions and the phone number so I could make another appointment. What a bust! On the upside, however, the contrast was going to be done via IV – I don’t have to drink the icky stuff!!

We went out to the main concourse to one of the information desks (there’s one at the entrance to each building), and I asked where we could find vending machines or a cafeteria or something. The guy smiled and pointed down the hall. “Keep walking,” he said. “You’ll find a food court on your right.” Food Court? “Sweet!” Tayler said. Forward we went. Along the way, we passed this little grocery store type place – it had a teeny-tiny Starbucks inside. Tayler wanted coffee. No. He’s the last person who needs coffee! But the food court! I almost fell over. There was a pizzaria, a Mexican place, something else that I can’t remember, a salad bar, and a Gold Star Chili. Down the middle was a breakfast buffet (which became a huge salad bar at lunch). We got trays and attacked the breakfast buffet. I got a stack of pancakes and a ton of scrambled eggs; I was starving from not being allowed to eat (can’t eat for several hours before a CT!). Tayler got sausage and two biscuits and gravy. A sign on the wall of the dining area said it holds up to 565 people. This isn’t counting the outside seating area, which was beautiful; it reminded me of a small park. (it was inexpensive, too! i fed us both for $6)

So, after, Tayler and I wound our way back around to the main concourse and down to nephrology. We didn’t see Dr. Goebel because he’s at a transplant seminar, but we saw Dr. Dixon. Thomas hadn’t grown nor gained weight; and here we were all certain he’d gotten taller than me!! :harumph: His blood pressure is still terrific – 102/68 – height and weight still the same as it was June 5th. Dr. Dixon was a gem; he wrote out the prescription for the Predisone I need for my CT angiogram – now I won’t be out for a doctor’s appointment just to get that done. He had Thomas’ usual blood draw done, and we all sat around talking about the imminent transplant and introducing ouselves to Dr. Dixon (we’d not met him before). He’s a young doctor and very kind.

From there, we went upstairs for our consult with Dr. Alonso, one half of our surgery team. She’s awesome and made us all feel at ease with both surgeries (mine and thomas’), even though Thomas slept through most of the discussion (poor kid!). Even though I knew this, she explained how we’d come to the hospital butt early the morning of the surgery. I’d go in first, and while I was in, Thomas would be prepped. If my body is able to do it this way, I’ll have two small incisions and then a bit larger one – just big enough for Dr. Alonso’s hand! I asked her about my c-section scar because that’s something that had been on my mind since almost day one with all of this. She said that it shouldn’t be an issue, even with it being a long vertical. That lifted a weight!

At the end, I asked her where she’d found her green ribbon lapel pin; I’ve been looking for one for five years. She said she couldn’t remember and took hers off her nametag and gave it to me!

The meeting with Dr. Alonso ran over, so we rescheduled our 11am meeting with Debbie for 1pm. Then, we went to lunch – in the food court. I shouldn’t have, but I had Gold Star. I’d not had Gold Star in a while, so it was more like a treat. Tayler, being himself, forgot to buy a drink and had to go back through the line! Silly.

At one, we went back to the complete other side of the hospital to Nephrology to see Debbie. Most of the stuff she talked about, I already knew – mostly from all the time I’ve spent on the website, the website, UNOS, and such. I’ve done a lot of research and networking since ’01. I know more about the inner workings and function of kidneys than anyone ever needs to know! But we mainly discussed the medications Thomas will be on post-transplant and what happens if I’m unable to be a living donor.

We did find out that if I’m unable to donate, because Thomas is still under eighteen and therefore considered a child, he will go to the top of the donor list for a cadaveric kidney. But if this happens, as we knew, it’s likely he might have to go on dialysis for a while before a kidney becomes available. Too, we found out that if I am able to give, if for some reason I ever need a transplant, I go to the top of the list for a cadaveric kidney.

For all of that discussion, I was glad David was there. He needed to be; he needed to hear what Debbie was telling us, especially about Thomas’ medications. For example, Thomas will be on Prednisone for life post-transplant – plus a slew of other medications. (Me? I’m pretty much given a pain reliever, some antibotics, and told “Thanks!”)

At two, we went up into another building for the anesthesia consult. The waiting room was cool – they had these strange consoles that had Playstations, X-Box, etc, built into them for the kids to play with. Overall, I think that was the easiest appointment all day. She basically explained to Thomas how the anesthesia worked and what would be going on before, during, and after his surgery with that. And, like everyone else, she asked him if he had any concerns or questions. I’ve been under three times; it’s really no big deal to me.

And at five was Thomas’ psychology consult; that ran right around ninety minutes. And if we weren’t tired when we went in…Mercy. This was all mostly background. David and I had to fill out a wad of paperwork the night before on Thomas’ early development. I had to call Preston and have him get down Thomas’ baby book! I knew he did everything ungodly (or seemed like) early, but then at a point, his development slowed. He was held back in 3rd grade because, like me, he has trouble with numbers – and he has reading comprehension issues. I have the same problem, but not to the large degree that he has. He can sound out a word and get it mostly right, but at the same time, he can read something, look at you, and not have any idea what he just read, or what it mean, or what it was about. He does better if someone reads to him.

The biggest thing about this consult is to make sure that the child receiving the kidney is going to be able to keep up the responsibility with taking his medications and understands what a great responsibility it is. The doctor wanted to get some alone time with Thomas, but we ran over; so I look for that to be something they do next time we go back up there. He’s likely going to be getting some extra counseling through his main psychiatry doctor in Casey County along with a medication re-evaluation. (Thomas calls his Abilify is “anger pill”; every time he’d say that yesterday, I’d crack up.)

So, that’s that. We pulled out of the parking garage headed home right around 7pm yesterday, dog tired and frought with information overload. Dr Goebel will call Jane with the results of Thomas’ blood draw later in the week when he’s back into the office. Dr Dixon said that he wanted Thomas back in the office in six weeks. He wanted next month, but Jane is going to be in Connecticut all through August, so that was out.

I tried to call Debbie today and kept getting the voicemail at Nephrology, but I left her a message; she never called back (unusual, unless she calls back tomorrow morning early). If she’s not called by 10am, I’m going to call her back so I can set up my appointment for my CT angiogram and see if there’s anything else at all I can have done while I’m up there again. Kathy and Ralph said they’d take me back up there to have that done.

Here are pictures of our adventures.