I was going to wait to write about our appointment until after we returned back to Kentucky, but I just tried to summarize our appointment, which ended about an hour ago, to my mother-in-law and had already found myself hazy on some details so I figured I better document now so I can refer back to this post to refresh my memory if the subject comes up again.
Well, after a night of anxiety and dread, we got up hours before the sun and began our long-haul to West Palm Beach, Florida for Drew’s 6th follow-up with Dr. Paley. I procrastinated packing just about as long as possible and when I did finally breakdown, gave up on the idea that my bag wouldn’t magically pack itself, it occurred to me that here we are packing for a trip to Florida, but not with excitement for a much-looked forward to vacation or pure giddiness in anticipation of all of the fun to be had. It has been a long time since we’ve actually travelled for fun and enjoyment.
My main anxiety stemmed from how Holden will tolerate the trip including an obscenely early morning wake-up and a dramatic change to the routine. This is our 6th follow-up with Dr. Paley with Holden at our side and the previous five times he did great, but within the last few months Holden’s calm and observatory demeanor has changed to active and not-easy-to-restrain. I have discontinued taking Holden to the movie theater due to his dislike of sitting quietly and contentedly in my lap and now prefers to explore his surroundings for endless minutes. I was near panic attack thinking how awful he’d be being denied his freedom in the crowded airports and no-tolerance-for-two-year-olds-running-down-the-airplane-aisle policy. After briefly reconsidering my no-medicine-inducing-coma policy, I just sucked it up and to my surprise he did pretty well. He slept for a small portion of each flight and did very minimal fussing, much to mine and every other passenger’s delight. But, this doesn’t mean that this anxiety will be subdued for our return trip and won’t have to go through the same talk-myself-off-of-a-ledge moment.
So, we got our rental car and checked-in to our hotel uneventfully. Nathan took Drew to see a movie while I stayed behind with Holden (because of the aforementioned “Holden does not sit quietly for movies”). Around 7 pm, 1.5-2 hours prior to his desired bedtime, Holden basically just collapses into an uncontrollable deep sleep. No amount of distraction or entertainment would keep his eyes open so I stopped fighting it and committed myself to another early wake-up. I did go to sleep immediately knowing that my sleep clock had been dramatically decreased. I only managed to get about an hour of sleep before the boys returned from their movie, and then I fought off restless leg syndrome and general discomfort and insomnia to finally squeeze in maybe another two hours.
But, those two hours, even though I was asleep, seemed to last an eternity….and not in a good way. The minutes craaaaaaaaaaaawled by so miserably slowly. When I initially woke, my internal clock felt that it must have been 5:30 so imagine my disgust when I looked at the clock to see it was 2:23. It was an absolute nightmare. Holden woke an hour later and I spent the next excruciating two hours feeding and entertaining him. Even these minutes were miserable. I don’t know what it was about this morning, but I literally thought that the morning would never end.
But, alas, it did. It had occurred to me on Sunday that I wasn’t quite sure what time our appointment with Dr. Paley was so I attempted to send an email to the personal email box of someone in the office hoping she’d have access to the schedule, but no luck. At 8:00 am, the answering service was still answering and there I learned that nobody would be present to ask until 9:15 so on the dot, I called and was surprised to hear that our appointment was in 15 minutes. Doh! Rush to get ready (luckily, we had a lot done with the awful awake hours and we are just a mile or two from the hospital.)
It was the same ol’ song and dance: complete a consent form, take x-rays, and a lengthy stay in the waiting area. I was excited to meet a fellow TAR family who happened to have an appointment set up in the same office and was anxious to meet the family as we’ve never personally met another person with TAR before. Drew finally got to meet someone like him and we talked, shared stories and she even gave us a pair of unused shoes her little could no longer fit.
Finally, we got to see Dr. Paley and a team of about six people. Dr. Paley examined the x-rays, dictated some abstract information to anther making notes, used the touchscreen monitor to measure points of interest in the x-rays. So, in the end, they decided not to do surgery on Wednesday to remove the internal fixator on his left ankle. Dr. Paley wants to wait the full two years of the work the 8-plates in each knee need to continue doing what they need to do. There hasn’t been any improvement in extension in his left leg and he feels it’s because the soft tissue in his knee is too tight and even though the 8-plate has appeared to have altered the femur, his leg isn’t actually straightening so the plan is to shorten the femur a few centimeters and place some…and this is where it gets a little hazy…wires in each knee that will need to remain in one leg for 6 weeks and the other for 8 weeks. He would also shorten the femur bone on the right to ensure that each leg was the same length (because his left leg is indeed shorter as I had self-induced and his plan was to shorten the femur would further increase the gap). They strongly recommended us to have a port surgically placed for easy IV access given that this will be three back-to-back surgeries and short arms always prove troublesome for IV access.
We then asked about his arms, just for the sake of a second opinion. He said that Drew would benefit from an ulnarization which would rotate the hand in order to line up better with the ulna. He said Drew would definitely benefit from an ulnarization on the right side and would have to investigate further regarding the left. He also suggested taking one of the two tendons from the index finger and placing it in the thumbs to provide more range of motion as well as cutting his tight webbing on his thumb. We haven’t committed to anything on the arms as we still have the Cincinnati trip to Children’s Hospital next week, but it will serve as food for thought for the specialists to consider. Again, we really hope we’ll be as confident with the Cincinnati team (or any local specialist) to eliminate any additional travel to Florida. But, whatever is best for Drew will be what we accept.
So, with no surgery on Wednesday, we remain in Florida for the next three days with no obligations or appointments so now we get to pick a few things to do for fun. We plan on visiting an outlet mall down the road in hopes they have a deal like last time to get 100 Lindor chocolate truffles for a bargain! We’re going to go to dinner with the fellow TAR family and maybe even meet up with some friends we made during our main stay. Of course, we have to go the beach and downtown, weather permitting. But, for now, the hotel computers and chairs are very ergonomically-challenged and my back and shoulders are throbbing from this lengthy post so I have to go to sign off and go lay down!