Do you ever feel that way? I don’t think I generally do, but I’ve been bad about that lately. It’s Murphy’s law…when your husband is deployed, anything and everything that could go wrong, does.
Last week Ethan and I went to Ft. Belvoir to have his back x rayed. He’s been putting his hand on his back a lot, but not in any pain, so we just wanted to make sure everything with his rods looked good and this would tell us if we could wait until this summer for his next surgery. No task is easy for Ethan, it breaks my heart. Stepping on a scale at the doctors office completely sets him off and he’s just terrified. X rays were no exception and they ended up having to take double what they needed because they couldn’t get clear images with 3 of us holding him down. I got the disk and mailed off to Philadelphia and have been waiting to hear. The nurse wrote to tell me she got them and would ask Dr. Campbell what he thought, but mentioned how he has grown, asked when my husband will get home from his deployment in case surgery needed to be moved up and that she would ask the doctor and get back to me. Today she wrote back saying that Dr. Campbell reviewed the images and compared with his last and he doesn’t think he will need to have surgery this summer, but wants to see us when Dan gets home. First thing I think is that’s AWESOME! But then worry sets in…why does he need to see us? Does he need to tell us something else? It’s WILD. I think it was just the way it was communicated, there was no reassurance that everything looked great and this was great news, it was just, “may not need surgery this summer, but you need to come in.” The nurse practitioner called to set up an appt and I just got a weird vibe. I’m sure at that point she was just trying to assure me all was well, but it all just seemed a bit off. If there’s one thing I’ve learned, it’s to enjoy each moment, so I’ll shove these weird feelings in the back of my mind and keep on keepin’ on. It’s hard to do, you always have that next surgery looming and creeping into your thoughts. I started worrying about this next surgery shortly after Thanksgiving. He does not do well with the surgeries at all and this next one is a bigger one with his rods needing replaced. His VEPTR’s don’t bother him right now, he’s all boy, jumping, crashing, completely wild and I love it for him, it doesn’t slow him down. WIth a replacement, they have to take everything but the anchors out and replace it all, it’s so much involvement with the skin, muscles and moving his shoulder blade. Much more pain than an expansion, which he doesn’t do well with either. I worried they would damage a nerve or that he would be in pain all the time. It sucks. So much. I do feel relieved that we can push this surgery back even more. Dr. Campbell invented the VEPTR devices that Ethan has, it’s been amazing going to him and being under his care. Not sure when he will be retiring, but I’m hoping we can find someone like him that takes Ethan’s unique situation in mind. Most docs won’t wait longer than 6 months to do surgery, he waits a year and this go round, it looks like it will be longer. Just so exciting and hope this continues throughout the years! Ethan is super tall, so I was literally thinking he’s grown out of them. So great to get good news.
I am very thankful for my little boy. Times get difficult and we have our struggles, but there is always so much to be thankful for! I also can’t wait for warmer weather and Dan to be home and our family to be complete again. Ethan misses his daddy. May can’t come soon enough!