The Hospital Stay
Disclaimer: I am not a medical professional. This post and all my blog posts are my experiences and opinions only.
I also suggestion this great video created by the team at St. Louis Children’s. It is very informative.
Day 0 Continued…
Once we were in our room we unpacked all the items we brought and acclimated ourselves to the room and the floor. This is where we would be spending the next 5 days. There is a family room on each floor, it has coffee, water, ice and a refrigerator.
Seth had to stay flat on his back for the first few days. He could tilt the bed up a bit to eat, but that was it. He was able to resume a normal diet almost immediately – once they saw he could hold down some simple items, juice, etc. Seth was on a regular pain medicine schedule, but do not be afraid to ask for more if you think your child needs it. More than likely, you will have to ask. Speak up for your kid! Seth also had a catheter and epidural for the first 3 days (until PT starts). We got lucky that neither bothered him.
In order to entertain Seth after his Selective Dorsal Rhizotomy (SDR) Surgery and try to make him as comfortable as possible, we brought an iPad holder that connected directly to his hospital bed. We also bought a FireStick TV for the hospital TV. Both were nice to have (for Seth and us). Lastly, we packed a few of his blankets and I am so glad we did. He often wanted us to cover him up, including his head. This was his comfort spot when there was a lot going on, he was sleepy or he wasn’t feeling well.
Day 1 & 2
These 2 days are a lot of rinse, wash, repeat from the day before. We did start to see Seth come to life a little bit more, day by day. He started to get his personality back and started to ask for certain movies/tv shows and a few toys. This was all a relief as a parent!
On Day 2 you also get to meet a member of the PT team and are given your schedule for the rest of your stay. It is both exciting and scary!
Day 3 – Get Out of Bed
On day 3 Seth was finally able to get out of bed after Selective Dorsal Rhizotomy (SDR) Surgery. It was very exciting but also very scary (probably more for me than him). He was starting to get restless and needed a change of scenery. You have 2 PT sessions, 1-hour each. It is recommended to have whatever pain medication you are on about 45 minutes before the session. I reminded the nurse as I know they have a lot going on and I wanted to make sure Seth got the medicine. This is also the day you will start using whatever stroller you brought. During the first PT session they focus on teaching you how to help your child get in and out of bed and the best way to pick them up and hold them. Holding him for the first time in 3 days was the best feeling in the entire world!
I won’t sugar coat it, it was hard, for both us and Seth, but he did amazing. He also loved being in the stroller. The PT showed us a beautiful garden they have on a lower floor. The weather was perfect while we were there and we were able to visit it a few times. Seth LOVED it and it was literally a breath of fresh air for us too.
This day is structured similar to Day 3. You have 2 PT sessions, 1-hour each. Again, ask for that pain medicine 45 minutes ahead of time. They start to push your child a little bit more to move around, but are very careful of their comfort level. Seth did some sitting and playing on a bench, which was amazing to see.
Note, ask your nurse if you can pick up your “go home” medication on this day rather than day 5. It will save you time on day 5.
Day 5 – Discharge
This is the day that we got to go home! On this day you meet with PT one last time to discuss what you need to tell your regular “at home” PT. For us they also recommended knee splints for night time. If you didn’t pick up your “go home” medicine earlier, you know go and get that and then you are on your way home!
We went to the hotel and packed up. We decided to break our drive home into 2 days to make it more bearable for everyone. The drive wasn’t easy, but it also wasn’t as hard as I anticipated. We made sure Seth got his pain medicine on a schedule and plugged right along.
We made it! What a relief to be home and see the rest of our family. I will never forget picking up my daughter from daycare that day and her running and jumping into my arms. It was the most peace I had felt in weeks.
We resumed PT the day after returning from home and then picked up aqua PT a few weeks later. I won’t lie, the month after the surgery was a very stressful time for our family. My husband and I work full time and normally Seth and his sister go to daycare. We decided to keep Seth home until he was comfortable using his walker again, which was about 5 weeks. I don’t regret it for one moment, but working full time with a smart toddler, with an active brain, that needs you to help them do everything physically while they are relearning how to use their body is A LOT. Each week Seth progressed back to baseline and things got easier and easier. We also had help from our family which was very generous, but I can tell you it was a big win for the whole family when Seth went back to daycare and our day-to-day was able to look normal(ish) again.
All in all…
Selective Dorsal Rhizotomy (SDR) Surgery is a hard decision to make for your child, but I truly think this was the right journey for Seth and our family. Seth has continued to make progress and from what we are told will for years to come. I’m in awe of the strength of my son. I know he can and will do anything he sets his mind to and most importantly, we will be here to empower him to do it.
Parenthood is about raising and celebrating the child you have, not the child you thought you’d have.
It’s about understanding your child is exactly the person they are supposed to be.
And, if you’re lucky, they might be the teacher who turns you into the person you’re supposed to be.The Water Giver