SDR Recovery Day 2: First PT Sessions, Itching, and an Unexpected Transfer Delay

Quick Stats

Age: 3 years old
Diagnosis: Right Hemiplegic Cerebral Palsy
Procedure: Selective Dorsal Rhizotomy (SDR)
Post-Op Day: 2
Pain: Moderate back pain
Appetite: Improving
Mobility: Wheelchair transfers and standing practice
Sleep: Poor
Mood: Frustrated but improving

Today was our first full day after SDR surgery.

The overnight hours were tough.

Amri experienced quite a bit of back pain and very little sleep. We are also navigating knee immobilizers for the first time. Anytime Amri is lying flat or sleeping, he must wear them to prevent stretching his hamstrings while his body heals.

Needless to say, they are not his favorite accessory.

Since Amri had a poor reaction to Gabapentin before surgery and we decided not to use it, we’ve been staying ahead of his pain by alternating Tylenol and Motrin on a schedule rather than waiting until he asks for medication.

The morning started with visits from both physical therapy and occupational therapy.

The therapists completed their initial evaluations and began teaching us the safest ways to move Amri.

We learned how to have him roll onto his side, sit up, scoot to the edge of the bed, stand, pivot, and safely transfer into his wheelchair.

Another important milestone happened early in the day when Amri’s catheter was removed.

One thing the team closely monitors after SDR is bladder function, so we were relieved when he was able to urinate on his own shortly afterward without any issues. It may sound like a small thing, but after major surgery every milestone feels important.

One of the biggest highlights of the day was receiving his wheelchair.

Not because we wanted him in a wheelchair, but because it finally gave him some freedom to leave the room and explore.

After what felt like an endless amount of time staring at the same four walls, that freedom was huge.

We were also encouraged to see his appetite beginning to return. After having almost no interest in food on Day 1, he ate a small breakfast, snacked throughout the day, and nearly finished an entire dinner of chicken broccoli Alfredo.

For hospital food, I’d call that a major accomplishment.

One thing that has helped tremendously is that we came prepared.

Before leaving for Houston, we stocked up on a collection of small toys from Dollar Tree. We’ve been using them as rewards for participating in therapy sessions, trying difficult tasks, and pushing through hard moments.

It’s amazing what a tiny dinosaur, surprise toy, or Hot Wheels car can accomplish when you’re asking a tired 3-year-old to do things that are uncomfortable.

Later in the day, PT returned for our second therapy session.

Unfortunately, it happened right in the middle of nap time.

Anyone who knows Amri knows he still very much needs his daily nap. Missing it turns him into a completely different kid.

When PT arrived, he was not interested in therapy.

At all.

The goal was to practice moving from sitting to standing.

Despite lots of encouragement, support, and a few attempted bribes, it just wasn’t happening.

Instead of forcing the session, we changed the scenery.

And honestly, it was probably the best decision we could have made.

We headed up to the playroom on the 10th floor.

The playroom is incredible.

There are toys, games, giant Connect Four, air hockey, books, crafts, and activities for kids of all ages. There is also a teen room and a library.

For a little while, Amri got to be a kid again instead of a patient.

Later, he drew a picture and wrote a letter for Dexter, one of the hospital’s service dogs.

When we learned there was a special mailbox in the playroom where children can leave drawings and notes for the service dogs, we made another trip upstairs so he could deliver it himself.

Those small moments of normalcy have become some of the brightest parts of our day.

Around 5:00 PM, we received a phone call from Children’s Health in Plano regarding our planned transfer to inpatient rehabilitation.

Unfortunately, we were told there was a “snag.”

Because of ongoing system outages affecting insurance authorization processes, everything has been placed on hold.

For now, we are in a waiting pattern until more information becomes available.

As the evening went on, a new challenge appeared.

The itching.

Amri’s back and legs became intensely itchy, especially during the evening and overnight hours.

Without Gabapentin, which is often used to help manage nerve-related sensations, the team believes much of the itching may be related to the nerves adjusting after surgery.

Many SDR parents refer to it as the nerves “waking up” or “rebooting.”

As uncomfortable as it is, it can be a normal part of the recovery process.

By bedtime, the itching was becoming just as disruptive as the pain.

It took until nearly 1:30 AM for everyone to finally get some sleep, and that only happened after Amri received IV Benadryl.

One thing that deserves special recognition is the incredible team caring for us.

The nurses have answered countless questions, checked on us frequently, and have been so patient through some emotional moments.

Christy from Child Life and Dexter have already become highlights of our stay, bringing smiles during some difficult days.

The therapy team has also been wonderful, taking time to explain what they’re looking for and helping us understand what to expect moving forward.

Day 2 was filled with small wins, new challenges, and an unexpected delay in our rehab plans.

Recovery is definitely not a straight line.

But we’re continuing to take it one day at a time.

Current Status

• Catheter removed and urinating independently
• Appetite beginning to return
• Back pain still present
• Significant nerve-related itching
• Transfer to Plano on hold pending insurance authorization issues
• Continuing PT and OT daily
• One very tired but very brave little boy
• One very grateful family