Much of the day was uneventful. Dr. C. made his rounds and clarified his statement after the surgery about how straight she is in the lumbar now. He said he was referring to L3, that it is looking fairly straight now. He’ll still have to see how she looks Monday when he’ll make the final decision on where to stop the fusions, but he promised to do the best he could with it. He also mentioned doing a test to make sure her diaphragm is working ok since it was partially detached and re-attached during the last surgery. Girl Child drank here and there, used the incentive spirometer, though she hasn’t really improved on her previous record of about 700ml. She had a time or two where her pain level was up, but she coudln’t get more medicine yet or it wasn’t yet kicked in, but she looked up for a firefly/star and focused on it to distract her. At some point one of the doctors in charge of ICU came in with another doctor and talked to us about possibly enrolling her in an FDA study of something that’s made and used in the US post-operatively, but that some hospitals want to source from Europe. The FDA requires them to study it on at least 60 kids to establish safety because it’s from outside the U.S., even though it’s the same thing. Girl Child pretty much said she didn’t want to do that, and if she’s that adamant, I doubt we’d make her, but DH and I will discuss.
Her tummy was starting to feel uncomfortable, and they again brought up the colace. I told them how the flavor of the liquid was awful and made her wretch before, and we talked about the possibility of getting a pill in her instead. She’s only ever previously taken pills if she could put them in a spoonful of applesauce, which she currently can’t have. But we hoped we could get it in her in a spoonful of jello or slushy. The nurse tried to find some slushy, but wasn’t able to (the machine is apparently broken or something), but we had success putting it in a spoonful of orange jello. Huzzah! She said her belly was starting to feel a little better, then drifted off thanks to a dose of valium. We had another visit from our friend T. who brought me a sandwich to eat for lunch. Friends T.J. and S.V. sent her some flowers, and she got a big smile when I read her the card and told her who they were from. After T. left and I’d eaten some of my sandwich, the uneventful day ended.
Nurse C. said it was time for her to go down for her fluoroscopy, the diaphragm functioning test. I asked if I could go with her, and they said yes, and I asked Girl Child if she wanted me to, and she said yes. Some other nurse came in to direct her transport down to xray. Myriad wires and tubes had to be undone, detached, and moved various places to get ready for transport. I asked if she would have to be transferred from her bed for the test, but they didn’t know. I really hoped not given that simply rolling her from one side to the other hurts.
When she was born, she had swallowed some fluid and mucus that caused her to spit up a lot, and they told us they needed to take her to the nursery to lavage her. That process involves running a tube up her nose and down into her stomach so they could flush out her stomach with water or some other kind of liquid. It would be uncomfortable, but necessary to help her out. Having just spent 43 hours in labor with her, I was exhausted and didn’t think I could emotionally handle watching my newborn screaming and getting tubes shoved up her nose, so I sent DH to be with her. Today was the day I made up for that. The day my stiff upper lip failed me.
The nurse in charge of the transport hit every bump on the way, and at times it didn’t seem like she was trying to be very careful. When you’re missing most of a rib, have a 6-8 inch incision in your belly, and your back muscles are angry at being cut 2 days ago, those bumps are painful. She cried out every time. When we got to the radiology lab, there was some confusion as to why Girl Child’s nurse didn’t come with her, and why only the student nurse and the transport nurse came from our floor. Sizing up the shape of things with Girl Child saying she was hurting and didn’t want to move along with the very unfortunate reality that she would have to be moved since the machine was too narrow to go over her bed, the radiology techs started gathering up more people to help.
For a moment it seemed a little Keystone Cop-ish, and I was not liking where this was going as they were trying to figure out the best way to get her from the bed to the table. One of them asked me how I was doing, and at that point I was listening to Girl Child crying as they’re trying to adjust things around her and now they want me to think about how I’m doing. Avoiding thinking about how I’m doing is how I’m doing ok at all. How I was really doing at that moment was really freaking sh**ty because my little girl was hurting a lot, and yet she needed this test to be done before surgery tomorrow, and there was apparently no way to move her that didn’t hurt. Having to watch your child in so much pain knowing you can’t make it better and you have to go along with it for her own good is panic inducing. The tech could see how upset I was and gave me a hug as my resolve failed me and the tears flowed . A radiologist came in and started directing things. Initially she suggested maybe waving off the test for today since Girl Child was clearly in so much pain. I mentioned the next procedure tomorrow is the anterior thoracic release, and the radiologist realized delay wasn’t possible.
They wanted to roll her to her left to put a board under her, but that’s where her incision and tube is, and Girl Child spoke up for herself saying she didn’t want to go that way. The radiologist very kindly said that was fine, she could be rolled the other way, no problem. After a very painful roll and board shoved under her, she was painfully slid onto the table where the fluoroscope machine was brought over her, bumping her table in the process. Somehow she managed to calm down and breathe normally for the test, and the radiologist said she got good pictures. Thank goodness, given the whole process sent her into a pain level of 10, which she has NEVER reported before. Another painful slide and roll ensued back to her bed. A woman who had been on the table sliding her over told Girl Child she is a beautiful young lady, at which point I wondered why, exactly, that was supposed to be comforting. Then she said, “Ya know, I wouldn’t get up on this table for just anyone, would I, mom?” Through my tears, I just muttered, “Uh, sure?”. Girl Child asked to see her fluoroscope pictures, and the radiologist adjusted thing so she could look at them. Then we proceeded to the bumpy journey back to the 4th floor during which I let out a, “Hey, can we watch the bumps?!” Once Girl Child was finally settled back into her room, she reported her pain was back down to a 5. They rolled her to her side for her normal every-2-hour roll. The trip and pain had exhausted her, and thankfully she slept peacefully for a long time.
