Our Teddy Bear's Journey

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

We almost didn’t come home Thursday

on August 8, 2013

So, our first Transplant clinic.

Teddy’s been having some concerning symptoms. First, some darkish urine. Not super dark, but not clear. His poop is still pretty runny and VERY VERY frequent. (I changed 12 diapers yesterday, every one of them with poop in it. Most of them with LOTS of poop.) Second, I don’t think he’s peeing enough, and I don’t think it’s just paranoia. Third, inconsolable crying in the evenings. Fourth, a few times when I saw him pee without a diaper, he kind of grunted and then out came the smallest, most pathetic few little drops of pee. Yes, welcome to the life of a kidney mom- it’s ALL ABOUT PEE. That said, I didn’t think anything was really wrong. Maybe a UTI, maybe just dehydrated (I don’t think 1 liter of fluid is enough, but that might just be the pre-transplant, high output experience talking).

Despite my earlier comments about taking siblings to appointments, I took all my kids this time. We were not anticipating the 7 hour horror show. 🙂

So, we arrived at the hospital about an hour before our checkin time, which was PERFECT. A half hour to get out of the car and to the bathroom. And a half hour to play at the playground to get out the Car Ride Wiggles. Awesomesauce.

Checked in.

Went for the blood pressure, temp, weight, length. Commence hysterical crying. Because of the length measurement. Everything else, he’s cool with. But when took his onesie off, I noticed… green discharge in his dressings. Ugh. His incision looked BEAUTIFUL last night when I changed the dressing, what happened?!?

So I knew that was pretty bad.

And he’s losing weight, which I knew from doing his weights at home.

So we head to the lab. That took about 30 minutes, three pokes, and she nearly gave up. He was hysterical from the second we walked in until we left. This gave further credence to my Dehydrated theory. He’s a hard poke, but he’s been getting easier, particularly for just labs. (IVs are another story.)

Then back to the waiting room. This is where the big kids started driving me crazy. I never feel like I can dig out all of our goodies in the waiting room. My bags are carefully packed and you can’t just throw stuff back in. But Wally had his DS out and Genna had an iPod, but Wally was shaking his legs and pacing back and forth, and Genna was having a very loud battle with the bean bags. Then she slammed her head on the floor. And Teddy was playing the charming game of Throw my toy across the room, Mom go get it. Argh. HATE the waiting room.

Once we got back to our exam room, Genna was seriously obnoxious while I tried to have a social discussion with Teddy’s old nephrologist (sniff), but she calmed down after that and was really really super good the rest of the day. Wally, too.

So… the good news. Creatinine (how we keep an eye on how the kidney’s performing) is still GREAT. 0.2

Everything else… messed up. Hemoglobin higher, which seems good, but it was TOO good (I mean, it’s still low, it’s still well below normal, but it just came up too high to be “normal”). Platelets REALLY high (nearly 1200). Electrolytes mostly too low. Various things all messed up.

New nephrologist is very concerned, particularly after I told her about the darkish pee, the crying, the not enough pee in my opinion, and the green junk from his incision. There was talk of admitting him. I’m sure she thought that the idea had not occurred to me, because why else would I bring my other kids, but she doesn’t know me well enough yet. Because OF COURSE I had planned for that eventuality.

Please note, the entire time I was talking to her, Teddy was crying. Not hysterical, but not happy.

So, we had the surgeons come to change his dressing. I think that took about a total of 45 minutes, and he was either hysterical or sleeping. I mean, he cried himself so exhausted, he fell asleep with me crouching over him, buck naked, on the exam table. The sucky part was, he kept falling asleep while they waited for supplies to come in, and then waking him up to work on him some more, and then wait for more stuff and fall asleep, and then wake him up. Poor kid. I felt so bad for him.

Remember when we had the surgeons come in and do some stuff to his wound and we had the sedation team in to sedate him for it? When he was still inpatient? Did I blog about that? I don’t remember. They did that again, but no sedation this time. OMG. So they basically used tweezers to pull out the “stuff” that grows in between the open skin – the stuff that’s supposed to be there. To make a big hole into his body. And then they fished around inside him for a while, pulling stuff out. EW. I stopped watching at some point. Then they irrigated the whole thing with hydrogen peroxide. Then they packed the gaping wound with silvadine (a salve) and gauze, and redressed him. The good news is, the top 1/3 of his incision looks GREAT and can be left uncovered now. The other 2/3 is horrific.  (before you get too concerned, I don’t think this process hurt him so much as pissed him off and traumatized him a little. I’m not downplaying that, but the nurse said that when she worked with adults when they had stuff like that done, MOST of them reported that they could not even feel it.)

Hey, guess who gets to pack the wound at home twice a day? THIS GIRL. OMG. I have to STUFF GAUZE INTO MY KID. Remember when I thought it was bizarre to flush his Broviac on a daily basis? Geez.

So, that was terrible. The big kids were pretty wide-eyed, too, but they stayed VERY quiet and VERY out of the way. Genna snuck over during one of the down times to hold my hand. 🙂

We ran and got some lunch at this point, before heading over to ultrasound. Dr. Zepeda wanted to make sure everything still looked ok and that there weren’t any big clots in there. Genna did her best to keep Teddy happy – she sang to him, bonked his nose, fake sneezed, zerberted him, and let him pull her hair. It was soooo sweet. She loves to try to make him happy during medical stuff. That said, he was still unhappy for the vast majority of our time in there.

We also got some urine.

And got his tacro level back, it was TWO. We’re aiming for 10. He was holding at a steady 5 when we left the hospital. What on earth?? So we’re upping his dose and checking tomorrow morning, too.

The long and the short of it is that everything looked ok ENOUGH to come home in the end. We’re to come back immediately if he gets a fever, has more dark urine, etc.

Oy.

The big kids were GREAT, and Teddy is still miserable this evening. 😦

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One response to “We almost didn’t come home Thursday

  1. Nicole Swanson says:

    I pray that this recovery road is short, straight and no more bumps along the way – or tiny ones. You are a very strong woman. Wishing you guys the best.

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