My posts are starting to look like journal entries…there’s just too much information to remember!
Day #2 started off early; one of the residents came in and told us that they were going to take her PCA pump and catheter out today. He said that we were going to try to get her sitting in a chair. That’s when the resident told us that she had a fever overnight, but he didn’t seem too concerned about it. She’s been drinking a little bit of water and eating some ice chips. The nurse said that we were going to try to get some food on her stomach so that she can start taking medicine by mouth.
Tried to eat some applesauce and drink some water. Ate a few bites but then she started feeling nauseous again. Started trying to throw up, so she got another dose of Zofran. I don’t know what they’ll do if she can’t keep anything down. They mentioned Phenergan again, but said that that drug would most likely just knock her out when they really need to get her up and moving. The nurse said that she would give it to her if she really needed it though; I just don’t know what that point is. Her temperature was 99.7. She’s been doing really great with her spirometer (the thing that the patient has to suck air from to make sure their lungs are expanding the way they should). About every 30 minutes she’ll grab it on her own and do her 10 little puffs. Her oxygen monitor keeps dipping to 90 and staying there, so that’s starting to worry me…
She ate some chocolate pudding. The doctor came in to see her, but she was asleep. He said that if she was eating well and her pain was under control that she could go home tomorrow. I’m thinking in my mind that there’s no way she can go home tomorrow. He said that he would leave it up to the nurses and that if she was still here on Monday that he would come see her then.
She ate a little bit more chocolate pudding and then the nurse took out the line for the PCA pump. She still has to wear the monitors for 12 hours after stopping the PCA pump because of the morphine. The nurses/doctor was hoping that by stopping the pain pump, it would help her nausea. They said that physical therapy would be in later to help her get into a chair.
Physical therapy came in and said that the goal for today was to sit in the chair 3 times. They were very business-like and kind of demanding. It was a lot of information at once. They said no twisting, bending, or stretching. She showed us how Mackenzie should get out of bed and after pausing a few times, we eventually got her sitting in a chair! That’s when the pudding from earlier came back up 😦 At this point, my mom and Ethan and Cayden were also in the room with us. After Mackenzie threw up in the bucket, all Cayden wanted to do was see it. She’s so gross like that. The physical therapist was telling Cayden that she was the exact same way when she was three years old, and that’s exactly why she does what she does now, because nothing grosses her out.
Mackenzie wasn’t happy about sitting and was pretty uncomfortable, but they wanted to see her sit in the chair for an hour. Ellie helped her through it 🙂
She made it through the hour of sitting and then her catheter was able to come out. The catheter seemed to be pretty uncomfortable for her so that was a relief to have it out. I was just worried about how she would do when the time would come to use the bathroom. After getting her settled into bed, the nurse finally gave her some Phenergan to try to stop the nausea. After that dose, she fell asleep.
A few weeks before surgery I joined a Facebook group for parents of children with scoliosis from all around the world. After posting about Mackenzie being out of surgery, another parent noticed where we lived and contacted me because her daughter had the surgery 2 years ago and was a leader of her area scoliosis support group. Her daughter is the same age as Mackenzie (they are actually just a month apart) and goes around to talk to other girls about any worries, fears, and questions they might have. So, they stopped by for a visit and Mackenzie was awake for a little bit…at least enough to be able to talk to her some. This girl was awesome; she talked to Mackenzie, asked her how she was feeling, told her how she felt after surgery, etc. The mom gave me some good info, too. It gave me hope that we’ll get there one day!
After they left, Mackenzie’s best friend came up to see her. Mackenzie lit up as soon as she realized she was here! She brought her a big, huge banner that she and her family had drawn themselves. It was so sweet. Unfortunately, Mackenzie was only awake for a few minutes and then was out for the rest of their visit.
I feel like I’m talking about my 3 year old when being excited about peeing in the potty, but I’m happy to report that Mackenzie was able to today! This was a big accomplishment! She had to take her time sitting up out of the bed, but walking to the bathroom wasn’t a problem for her. Then she had to do another hour in the chair. This time it looked like it was easier to her and she even seemed to doze off while sitting.
After Round 2 in the chair, she was in pain and got back into bed. She has gotten up to use the restroom three times so far and it’s tough because each nurse does things differently. The physical therapist says no bending, twisting, or stretching. The nurses say that she has no restrictions; only move how it feels best to her. They each get her out of bed differently so I don’t know the best way to help her with the least amount of pain. This afternoon/evening she has been sleeping a lot. Around 8:30, they took her temperature and it was 101.1. They gave her some Tylenol (first thing taken by mouth that has stayed down, at least so far) to see if it would bring her fever down. It’s 10:00pm now and her temperature is 101.4. So, apparently the Tylenol did not work and I have something else to add to my list of worries.
Hopefully tomorrow will be a better day!