Our Teddy Bear's Journey

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

Liver Biopsy and Home

on June 1, 2013

The short story is: Teddy’s liver biopsy went fine and we’re home now. We anticipate results  mid week.

The middle length story: Wow, it’s so much harder being in the hospital with Teddy NOW than it was when he was just 1 and could only sit – and barely. His anxiety level was higher, as well, and it just took basically continual effort on my part to keep him happy. He won’t watch TV. He doesn’t really like to read books. He really just wants DOWN. on the floor. And not to stay on the blanket I put down for him, either. Sigh. I took over 13,000 steps on Friday.

2013-05-30 15.46.29
This is Teddy playing in his custom hospital gown from the June Brandy Foundation. 🙂

The longer story: We had a few humorous – and not so much – moments involving the general Nobody Knows What’s Going On shenanigans that seem to happen lately. We showed up when and where we were told to be admitted and NOBODY was expecting us. 3rd floor sent us to 2. 2nd floor wasn’t expecting us. We were told to wait in the lounge for a while. Half hour later, someone from Patient Relations came to talk to us and apologize. She gave us a gift card to the cafeteria and said the room would be ready in an hour or so. Which I thought was a nice gesture, until I got downstairs and found out it was $5 and didn’t even cover chicken strips and a drink. I was pretty pissed about the whole thing, but followed my own advice and, recognizing that it wasn’t THAT big of a deal but that I was mostly just anxious and all out of Roll With The Punches, I called Randy and my sister to get my complaining out of my system so I could be polite to the people who would be providing care for my son.  They figured it out, but we ended up in a shared room, which kind of stunk (for both of us, Teddy was no treat as a roommate, I’m sure).

But I think everyone we saw apologized to us over it, where I didn’t think it was *that* big of a deal. The resident said he was supposed to offer us something as an apology and asked if I’d take parking passes. Well, hell, yeah – I’m not turning that down! And then the Nurse Manager came in and gave me a pass good for three hours. Hm. That’s worth $3. NOT that I’m not grateful, but I know that Free Parking passes exist. They gave them out in the peds infusion center last year. So… Sorry for the great inconvenience about which we’re making a big deal. Here’s $3. I should’ve asked for a free surgery or something.

And then his biopsy. I thought we were supposed to be doing it down in the Clinic, but Pain Management and the nurses and Child Life were all getting ready to use the treatment room on the floor. We just go where we’re told, and they told me Treatment Room. Teddy was getting ready to fall asleep, so I was sort of wandering around when I caught wind of the fact that SOME of the GI doctors and at least one of the pain management people were down in the clinic, whereas the rest of them were up on the floor. The GI doctor called up wondering where we were.

Other highlights: Transport couldn’t get an IV placed after 4 tries, so we called NICU to send up a nurse to give it a shot. They didn’t come up until after 9 pm. 10 minutes AFTER Teddy fell asleep. That wasn’t a good time. He was then absolutely hysterical until 11 or so, at which time our roommate started getting social calls from her girlfriends. I fell asleep around midnight when she was still talking, only to be awoken shortly after because his Potassium was too low and they needed to do a potassium bolus thru the IV, which involved 15 minute vitals for 2 hours. I nodded off at a few points during that whole thing, and then was up again at 4 when Teddy woke up because the nurse changed his diaper. I would rather have slept in a puddle of pee than risked waking him up at that point. Finally got him settled back down around 5 and slept for an hour before I had to get up to pump at 6. THAT was a WONDERFUL night.

He fell asleep in the wrap shortly before his biopsy was to start, so the gal from pain management just adminstered the IV drugs while I held him and then I laid him down and he was OUT. So easy. Everyone else in the room thought it was OK if I stayed, but the GI doctor said no. I think I made him nervous. He did confirm to me that the labs results he had seen from Teddy suggested autoimmune hepatitis (which I had already figured out on my own) and the biopsy should be able to confirm or rule that out.

The wrap came to our rescue again after the procedure, when I was tasked with keeping him still for 6 hours. HAHAHA. He was miserable with a dry mouth and hunger and just general getting the anesthesia out of his system, and he had to be NPO for 4 hours after (making it about 12 hours NPO). But we did give him some moist mouth swabs, which he LOVED. He was actually gagging himself on his own dry tongue, but he was pretty funny trying to figure out what was wrong with his mouth. 🙂

2013-05-31 10.06.34

The rest of our stay, we just tried to survive.

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