We have been home since Sunday afternoon and I am quite impressed with Nataleigh’s recovery. The first two nights were a bit challenging. The biggest part has been trying to keep her comfortable. However, I must say, it is amazing how well a child having distractions helps. For her, she really enjoys playing with slime. Just folding and kneading it really does distract her. Being distracted equals less pain. You can see she did get quite a bit of new hardware in her body.
Medications have been another big thing. We have kept them going at the frequency were we instructed. She gets percocet and ibuprofen like clock work! Where I am most proud of her this week, has been her ability to get down to lower and lower doses of the percocet. Our goal for her is to be narcotic free by the end of the week. We are really hoping that will happen.
Nataleigh also started her home bound school program. This program is fantastic. She is assigned a teacher who comes to work with her four hours a week and this counts as her school attendance. She is being given homework in her core classes and that too is helping keep her distracted. The school program is a great program for children who are in need of extended periods away from school for medical reasons.
All in all, I think she is doing great. There are some adjustments being made in some of her daily activities, but nothing that she will not adjust to. In the long run, doing this will save her from future complications from the scoliosis because the curvature had continued to worsen. With her having still nearly two years of growth left, there is no telling how bad her scoliosis may have been without this surgery.
It had been approximately three and a half days since Nataleigh’s surgery had ended and we were headed home! The night went well. However, Nataleigh did have some discomfort. She even got upset with us because we let more than six hours elapse between her doses of medicine. Once we got her comfortable, we would be ready to go.
While we waited for her medicine to kick in, I loaded up the car and straightened the room. I had already loaded up a good number of things the night before, but of course there were still things we needed during the night. It took us about an hour and a half to get everything ready, but we finally got on the road about 7:30.
Nataleigh slept some once we departed. We stopped for our first walk and some food at the last turnpike plaza before getting on to I-75. We had Dunkin Donuts to eat. She was excited about getting the donuts. The stop lasted about 30 minutes.
After getting back on the road, we stopped at a rest area just after getting on I-10. This stop did not go so well. She was uncomfortable and felt some nausea. We think it was from the heat! However, we did make it through. She walked again and then we headed on up the road.
The next stop was in Tallahassee for lunch. This stop was some better. I think because we gave her medicine about a half hour before stopping. She was also excited to get a Frosty to eat. We spent about 45 minutes here.
The last leg of the trip went really well. Nataleigh slept almost the entire way. Once we got close to home, she was ready to get there and did not want to stop again. However, that being said, I was not allowed to pass by the Smoothie King when we went through Pace. She didn’t want to go in like normal, but we did go through the drive through.
We finally made it home about four o’clock in the afternoon. It was nice to be home and Nataleigh was glad to be home too. Stephanie and I unloaded the car and started putting things away. We too, were very glad to be home!
I wrote previously to tell about the news of being discharged today. However, we had not made it through the entire day. After the news from the doctor, we continued on with our day. Nataleigh had already been discharged from physical therapy, but we still wanted to keep her up and moving. We visited the gift shop and we did some more walking around. I even think we threw another Starbucks trip in there.
About 1 PM, we were given discharge papers and were told we were free to go. We had requested some supplies for the trip home so they gave us a nice departing “gift”. We had ice packs, hot packs, puke bags, and many pillows for the trip home. The challenging part was going to be getting Nataleigh and all of this stuff to the Ronald McDonald House (RMH).
I made the first trip with supplies to RMH and then returned to the hospital to get Stephanie, Nataleigh, and everything else. Nataleigh was ready to go and would be getting transported by wheel chair. Again, if you know Nataleigh, she has always had a fascination with medical stuff. She has played with crutches growing up and I even created her a wheelchair at one point in time to play with. She was somewhat excited about the ride.
We made the trip to RMH and it went well. We bumped into some things along the way and had some good laughs about it. We then made our way to the kitchen and grabbed a couple of snacks before going to the room. Once settled into the room we had to figure out dinner. I had promised Nataleigh some sushi while we were in the hospital. On Saturday, I planned to get her some, but the sushi place was closed. So now we had to find her sushi. I was okay with that, because that would give us a reason to try out a short road trip.
I located a sushi restaurant and we loaded up. Everything went smooth. Nataleigh figured out getting into and out of the car. We made the trip and she ordered her sushi. While we waited, we walked a little bit and then we headed back to RMH. She did well with the trip.
After we returned to RMH, we headed back to the kitchen. At RMH, you aren’t allowed to take food to the rooms. I totally understand their reasoning for this too, even though it can be a little inconvenient. Nataleigh ate about half her sushi and then had a few rice crispy treats. After eating, we returned to the room to get comfortable for the night because in the morning we would be heading home!!
I wrote this as day 2.5 because we haven’t made it to the end of the day quite yet. However, we did get some news this morning that was just too good to wait to write about.
We had a short visit from the doctor and he asked how things were going. We told him she had a good night last night. Only some minor pain, but the oral meds are helping control that now. I had received a call at 4:45 where Nataleigh asked me to come to her room, but by the time I was there she had been medicated and felt much better.
The good news came in multiple ways. Nataleigh had a great night and the doctor said he would discharge her today. We aren’t in any hurry, so we will stay here in Orlando tonight and head home tomorrow! Nataleigh has been doing great!!