Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Today’s Clinic Visit

on October 31, 2013

I might be more hazy on what happened at today’s clinic visit than I am about any other appointment ever in my life. I’m so tired. So tired. It’s been a remarkable week of just jam-packed stuff – stuff out of the house, stuff in the house – and extremely late bedtimes for Teddy, who’s all off-schedule from his ER visit.
Then the big kids were TERRIBLE. I mean, TERRIBLE. And Teddy was all wound up. It was a small room full of noise and distraction.


So we started out by arriving a full half hour early. Usually, that half hour is reserved for playing outside, but it was raining, so we decided to play the computer game in the waiting room. Then they called us back for labs early, totally ruining that plan. Labs were a nightmare, evidently the experiences in the ER made for a huge step back in Teddy’s anxiety about labs – and it took three pokes, mostly because he moved so much, he yanked out the needle the first two times. (I mean, he didn’t yank it out, but he managed to writhe so much despite three people holding him down that it came out.) Then we went back to the waiting room. For an hour. 45 minutes past our scheduled appointment time, we were taken to the education room (NOT an exam room) to meet with the nutritionist, who came in 20 minutes later (1:05 past our appointment time). Kids are being pretty good. Education room has a VCR, they’re watching Scooby and coloring/drawing.

Nutritionist approached me with what she called a “compromise.” That I would start fortifying the breastmilk Teddy gets with infant formula. Um… no. I ultimately told her that I just wasn’t going to, period. Not to make her life more difficult, and I know that she’s in a tough spot between the doctor (who’d like us on formula 100%) and me (who is not going to do that). But, no. She did not seem super happy about that, but I was too tired and pissed about the lateness to really work up too much sympathy. We agreed that I’d switch the water he gets overnight to almond milk or rice milk or some other milk alternative. Not cow’s milk, she did know I wouldn’t go for that. Frankly, ANY choice makes my life more difficult, but I think I’m going to switch to 1200 mL bags (we have 500 mL right now, so I have to do a middle of the night refill) and then I’ll have to rig up some sort of insulated bag for it. Until I get that in place, I’ll have to get up at 3 am when the bag’s empty and get out of bed to get the jar from the fridge.

So after this conversation, the kids were nice and settled in. We had the toys out of the bag, snacks out, coloring pages out, crayons, there were Teddy’s trucks all over. Jackets off. And then we had to move to an exam room. Ok. Pack up everything. Grab everything. Turn off the movie. And then all hell broke loose, essentially. Genna had been absorbed in her Dora activity book, but didn’t want to get back to it in the new room. Wally had been reading, but wanted to play Genna’s iPod now. (His own iPod, of course, I had charged up in anticipation of the day, but he took off the charger yesterday and used and the battery was now dead. Genna doesn’t really have an iPod, but she and Teddy sort of share the really old one we still have kicking around here.) Genna wasn’t using her iPod, but neither she or Teddy thought Wally should touch it. Teddy, meanwhile, had settled in with his trucks, but now wanted to run up and down the hallway. Genna starts playing with the curtain, and demanding that Wally play with her on the chalkboard. Wally doesn’t want to (which is fine, she wasn’t being nice at all). Genna starts making the exam table go up and down. Teddy’s peed in his pee bag, but it came undone – honestly, I knew I’d let too much time pass, but he was so chillaxed that I’d hated to bother him.
OMG.

During all this commotion, I tried to have a conversation with Teddy’s nephrologist. There were multiple violations of the When Mom’s Talking To A Doctor, You Be Quiet And Play Nice rule. Enough violations that they didn’t earn a Lego Minifig (their bribe for doctor visits) and they further are not accompanying me to iowa city again until they can assure me that they can behave. That said, we were now at 1:30 past our scheduled appointment time. They had *really good* behavior for the first hour or more. I wanted to point that out to the doctor, and I think I will if this keeps happening. I mean, I don’t mind if she can’t see us until 11:00. But then I’ll sleep an extra hour and a half and come in at 11, you know? If I can get up before dawn and get my kids up and dressed to leave the house at 6 so we can get there to be on time (which means 20 minutes early – you’re supposed to show up for your appts at least 20 minutes in advance), then I don’t think it’s asking too much for that effort to be respected by showing up ON TIME. How can you be behind schedule at 9 am??

So. His kidney function looks great. Prograf level (one of his immunosuppression drugs) was in target range (after being both extremely low and extremely high in the last week). Electrolytes looked good – sodium’s good, but potassium’s too high. Not dangerous, but high.

Liver function tests all elevated. Not as much as they were in May when his transplant got cancelled, but still high. argh.

Her main concern continues to be his weight. Which, again, I just can’t work myself up about. I’m just not that worried. Maybe I should be, I don’t know. Nobody’s really explained to me how this is an overall bad thing. How will a lack of impressive gain now impact him in the future? I don’t know.

I do, however, agree that looking into possible NON-DIETARY causes of lack of weight gain is appropriate. Really, anything besides blaming his diet is a welcome change. So, the first step was running some labs to look at things like thyroid function. His TSH (thyroid stimulating hormone) is high, with a normal thyroxine. So normally this might indicate hypothyroidism, but that causes weight gain, so I’m betting that’s not it.

So next step is a consult with GI to discuss whether he has some sort of absorption issue or if they have any other ideas for us. And then allergy to see if he tests as allergic to any foods. Good times.

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2 responses to “Today’s Clinic Visit

  1. When my LO was on chemo weight was always a huge issue too, I don’t know why. They wanted me to wean him, give him a g-tube and formula…ah thanks, I think we will pass.

    I suffer from autoimmune hypothyroidism and TSH alone is a useless number. To get a really good idea of what his thyroid is doing a TSH, T3, T4, TPO, and RT3 test should be run. The TPO is probably the most important number because it will indicate if Teddy’s body is attacking his thyroid. I would bet that the unavoidable stress is hard on his adrenal glands as well, you can get a saliva test for that. [You might already know all that, just thought I would share in case is could be of some help 🙂 ]

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