Sometimes extended hospitalization can lead to a need for different kinds of therapy. Like I mentioned earlier, N needed occupational, speech, and physical therapy while he was recovering in the hospital. However, he still needed professional help even after we got home.
When his neurologist told us he still needed therapy, I was hurt. No one wants to hear their child is developmentally delayed. I took it as a personal insult, even though N was very clearly “behind” from lying still in a bed for 11 weeks. At five months old, he could barely move his arms and legs to swat at dangling toys. It felt like my fault, like I hadn’t been doing enough to keep him caught up while we were at Shands. Which is absurd, because there’s only so much he can learn while he’s almost completely sedated. But my rational side couldn’t quite overrule my emotional side on this one. I still took it as an assault on my parenting skills. I knew he would need help, but I was arrogant enough to think that I could help him all on my own. I didn’t need a therapist for my son; I was going to be his therapist. I was going to fix this.
Our transplant team and our neurologist told us that we should connect with a program in Florida called Early Steps. Early Steps is a state-funded program that pairs therapists with children under the age of three who are developmentally delayed due to medical procedures and prolonged hospital stays. I begrudgingly agreed to meet with them.
They came to our home, so that N could be more comfortable being surrounded by familiar objects while being evaluated. We were given goals for him to achieve by certain ages, and we were given a plan to help us succeed. Then we set up a time to meet weekly so they could continue to evaluate him and give us new “homework” for the week. At first they came to our house, but now that N is in daycare, they meet him there.
I was floored at how he immediately began to progress. Sure, he was learning from us at an accelerated pace, because everything was new and something to learn. But when we followed their advice and used their tricks and suggestions, he really thrived. In no time, he was sitting on his own, bearing weight on his legs, and really catching up to his peers. After just a few months, even our transplant team and neurologist were blown away.
I highly encourage you to seek out programs like this in your area if your child was delayed from his or her hospital stay. You can usually obtain information for them through your transplant staff or your local pediatrician. Don’t be like me and try to avoid them. Embrace them! It’s absolutely worth it to seek help from professionals. Ultimately I would have done N a disservice by not getting their help, and he certainly wouldn’t be where he is today without them.
There are also special daycare facilities who have nurses as the care providers, and these nurses are qualified to administer medications and are familiar with the nuances of transplants and other medically complex cases. In Florida, these care centers are called Prescribed Pediatric Extensive Care, or PPEC (think “pea-peck”). Unfortunately, the one near us is too far out of the way from our commute to work, but it is a last-ditch option if we ever needed it.
If your child is older, ask them if they want to speak with a psychotherapist. Going through a transplant is traumatic for all involved. I have anxiety and OCD, and when everything was happening with N, it sometimes became debilitating. By talking to a professional, you can take control of those things. They don’t have to hang over you. It may also help them to talk to their school counselors. That may feel like a more controlled and familiar environment for them, and less like they are being evaluated by a shrink. Either way, sometimes it helps to speak to a third party, and not your parents. Because it can be difficult to be open and honest with your parents sometimes. A professional may be just far enough removed to allow them to open up. Seeking help is not an admission of failure; it’s the ultimate sign of strength.