Sunday, May 25, 2014

Post-surgery update

Sorry for the long delay in an updated post. X has been recovering from his surgery and getting back into his therapy routines. He's needed extra one on one attention and snuggles. That's perfectly fine with me. :) I love my X snuggles!

How is he doing post-surgery? Overall, he's doing REALLY well! He's stronger and making more progress than he has in a long, long time. It's a little strange to see a symmetrical little tummy after not ever seeing one for his entire life leading up to the surgery. It's strange to see a scar where there wasn't one before. The surgery was still worth it, though. 

At this moment, we're still working through some anxiety that's left over from the surgery and time in the hospital. He struggled with anxiety when he first came home from the NICU at 3 months old. We were expecting something similar again after surgery, but nothing could have prepared us for how severe it actually was. 

This time, his anxiety was severe. REALLY severe. The first few days he was home after surgery, simple things like his sock falling off during play would cause him to cry and shake for several minutes. He would be completely inconsolable during that period. 

To see your child be in intense pain - whether physical or emotional - and having very limited things you can do to soothe them, comfort them, and make it better is heartbreaking. There was more than one occasion when all I could do was hold X close and whisper to him that we were here until he calmed down again. 

We've learned a lot to be able to help him through physical pain. We know what medications to give, when to use heat or cold, positioning, stretches, etc that will help relieve the pain he feels. It's always sad to see him hurting and I often tear up right along with him. The emotional pain, however, is something we haven't had much experience with. We don't have the same tools to be able to help him...at least not yet. 

More than anything in the world, I wish I could spare X all the pain he deals with. He rarely shows how much discomfort he's actually in. Sometimes we don't even realize it until something changes that makes us look back on past events and realize that he MUST have been uncomfortable. For the most part, X is just his normal, happy self. So when he does hit a point where something hurts enough to make him cry, it's usually pretty severe. The crying is usually sobs mixed with screams. We often cry with him; especially about emotional pain when we're so unprepared to help him. 

Hopefully this week, we'll have more ways to help him. X will be going to his first therapy appointment. Due to X's age and limited physical abilities, I don't know how much a therapist can do even in play therapy to help him with his anxiety. Still, I'm hopeful that they can help US learn more about how to better help X through emotionally painful situations. It will be an interesting and educational opportunity for all of us. I'll update again after our appointment. 

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