Drew had a follow-up with Dr. Paley yesterday to evaluate both legs’ progress. I was a little anxious at first because just as we started to enter the building, Drew started complaining about pain in his legs and I had forgotten the pain medicine. And, Drew was already disgruntled having to be there as I had warned him that he would have to have a blood draw today (for cardiology) and he was dreading that. Luckily more than cry and scream, just wanted to cuddle and he tried his best to convince me to go home and forget the shot. He doesn’t realize how hard it is for me as well having to put him through that stuff.
But, all in all, he behaved very well for everything. He was a little upset during the x-rays mainly because I can no longer stand by his side and hold his hand since I’m pregnant so I have to leave the room. But, I convinced Drew to be very still and to listen to the techs so they ony had to do one shot of each leg and can get it over with faster. Not long after, we were escorted to an exam room to wait for the doctor.
I was pretty worried about both legs for two different reasons. I was worried about his right leg, the leg with the brace and the leg with the femur fracture, because he previously had a cast on it to keep it completely immobile removed because of a suspicion of infection (which turned out to be unfounded) and in our impatience and frustration with the cast, we asked if we could use his brace which keeps his knee locked in a straight position, which is what they felt was most important, and allowed Drew a little more freedom in being able to sit straight up. They didn’t have a problem with that. But, after a little bit taking care of his leg in his brace, I started to worry that removing his brace for showers or the movement that was allowed in the hip (that was greatly prevented by the cast) actually would exacerbate the problem. I just envisioned Dr. Paley (who was not present during the “can we just use the brace and discard the cast?” conversation) condemning me for all the damage I allowed to happen to Drew’s healing leg because I was so selfish as to not want to use the cast. What can I say, I’m a worry wart.
I was worried about his left leg, the leg with the fixator on it, because it was incredibly swollen. It’s nearly twice its size. I was actually so concerned about it that I had brought Drew into the office in the middle of last week, unscheduled, just to have a PA look at it and tell me whether something was wrong or not. Drew has a pin that hovered above his thigh that I used to be able to stick a finger up to my first knuckle underneath, but his leg is so swollen that his leg actually pushes against this very pin so I can’t even get gauze underneath. The top ring of Drew’s fixator isnt’ a complete circle like the bottom two rings, it’s in the shape of a horseshoe (kinda) and his leg is so swollen that he no longer has space between the ends of the ring and the ends of the ring are actually digging into his skin. Drew says it doesn’t bother him pain-wise, which is good, but with Drew’s leg so swollen, needless to say, I was worried. But the PA looked at it for three seconds and said it was fine and nothing to worry about.
But, I did worry about it and it was one of the first things I asked about when the doctor finally came in. He looked as his leg and noted that it was consistently swollen all throughout the leg which is a sign of extra blood flow. He said the real problem occurs when the swelling is isolated to only one part of the leg. He was pleased with the healing of Drew’s right leg, the brace leg, and pointed out on the x-ray all of the nice new bone that has developed. So, I was relieved to hear that I had not further screwed Drew out of his walking future. Dr. Paley soon came in to evaluate Drew’s left leg to confirm his satisfaction with the placement of Drew’s leg after all of the corrections. I was really hoping that his leg was perfect and we were done with adjustments, but Dr. Paley said that his foot still needed 12 degrees rotation externally so we have about 2 more weeks of adjustments. It’s actually not a lot of adjustments and it’s only on the bottom portion of the fixator so it shouldn’t be too much of a problem for Drew. It’s the top adjustments that were really painful for him.
Dr. Paley also said that I should go ahead and schedule the surgery for the removal of the pins in his right leg and he would also remove one pin from the left leg that was not necessary anymore. So, that will be done February 25th. Depending on Drew’s pain and comfort level, we’ll be able to pack up and head back to Kentucky the very next day if Drew is up for it.
During the appointment, it was noted that the struts on the bottom portion of Drew’s fixator needed to be moved. Because of the massive rotation that Drew underwent, the struts were starting to get too close to his skin, one even pushing into his skin and starting to create a pressure sore. If you think about taking a wet towel and ringing it out to try to dry it, the center of the towel experiencing the most rotation gets smaller in diameter so this is the effect that was happening on Drew’s fixator. So, we had to have all six struts on the bottom portion moved to increase the room between his leg and the struts. This took about 20 minutes and Drew’s patience was getting thinner and thinner.
After that, we had to return to the clinic to get our new schedule. Hot doctor spent about 20-30 minutes with his handy calculator and keen eye to visualize the correction needed, he entered measurements in the computer software and it generated a new adjustment schedule. Dr. Paley came in to finalize the day and seemed to happy with things.
At this point, I took an opportunity to question Dr. Paley about Drew’s future with braces and what Drew will and will not be able to do with braces. He won’t be able to jump on a trampoline (:'( ) and he may be able to enjoy some “softer” sports. He confirmed that Drew will be wearing braces on his legs until “growing stops” which is about 12-15 years. He reassured me that the braces won’t be restrictive, but it was necessary for Drew to wear the braces because Drew has weak knees and they are likely to buckle. Drew needs the extra support to support his weight.
I couldn’t help but be somewhat disappointed and start to doubt this whole process…
Afterwards, we ventured to the lab for the blood draw. It went fine and Drew even said, “That didn’t hurt!” afterwards and thanked the nurse for doing such a great job. But, turns out the instructions for the blood draw indicated they wanted two blood draws from two different places in his body, but I declined the 2nd blood draw because Drew lacks the places in his body in which blood can be drawn. Only his right hand is available for blood draw and most often, nurses even fail getting to it successfully before blowing the vein. His left hand is just too difficult to work with. Neither of Drew’s legs are accessible for blood draw so Drew only has one area. So, they’ll just have to live with one sampling of blood.
We finally made it home after a dinner break at Chick-fil-A (yummy!). Drew was happy to be back playing with his toys and I collapsed on the couch and the day’s events ran non-stop through my mind, mainly the 12-15 years that Drew will apparently be wearing braces. Dr. Paley said that the braces wouldn’t be restrictive, but I just don’t see how they couldn’t be restrictive. I can’t imagine anybody being able to run a marathon in braces. I can’t imagine that they’ll be so “restrictive” it’s like they aren’t even there. I mean, if his knees are so weak then even with braces, wouldn’t he get exhausted more easily? He won’t be able to run as fast as everybody else. At least I assume he won’t. I really don’t know what type of braces is required as Dr. Paley isn’t forthcoming with a lot of information, so maybe I’m overreacting. But, I can’t help but worry that Drew won’t be able to do as much after these surgeries as I hoped.
I’m glad that Drew will walk, but 12-15 years of wearing braces, which I’m trying to take Dr. Paley’s word in will not be restrictive, just wasn’t in our plans. Our dreams for Drew included joining a soccer team, running around the neighborhood with friends, playing kickball, climbing, etc. just like any other “normal” kid does. We didn’t do these surgeries just so Drew could technically walk. Drew could get around from point to point just fine before. Yes, it was on his butt, but if the only result of this surgery is that when Drew feels up to it and for short spurts of time and short distances Drew can put one foot in front of the other in a standing position, then that’s no better than getting around on your butt or being confined to a wheelchair. I’ve questioned Dr. Paley on multiple occasions and you just have to work closely with him to know him, and I still dont’ feel like I know how to communicate with him, but he has reassured me that Drew will be “normal”. Obviously, nobody can accurately predict the future, but I think I’ve asked so many times that Dr. Paley knows what I expect at the end of these surgeries.
However, I’m still very disappointed that braces are required for so long. I just don’t see how this fits into our goals and dreams for Drew. And, I started thinking: if Drew’s knees are so weak and likely to buckle that we are looking at 12-15 of wearing braces, then why are we not doing something about Drew’s knees to make them stronger? I hated to think about it, but people have knee replacement and knee prosthetics all of the time. Could we not consider the same for Drew? The thought of additional surgery for Drew is almost unbearable at this point. I said before how exhausted I was and how difficult and trying these times have been. Do I, much more Drew, have the strength to pursue more? But, Drew is obviously very important to us and we don’t want him to have to go through all of this for being confined to restrictive braces for his young life. If there is a chance to further enhance his capabilities, we must seek it out regardless of how tired we all are. So, after Drew’s current leg surgeries are done and a likely heart surgery, we are probably going to get in the market for a pediatric orthopedic/prosthetics expert, hopefully within 200 miles of our Kentucky home, just for a consult. Just for information. I can’t say we are going to immediately jump into more surgery, the mere thought of it is painful, but I want to know what can be done. It could be something that can wait a few years to give us time to decompress, recover, and even then Drew can voice his unbiased opinion on whether or not he’s interested in these enhancements (right now, I don’t think Drew would allow a doctor to surgically do anything, regardless of what he can do later with it lol) I will go to the ends of the Earth for Drew. I may kill myself doing it, but I will not stop until Drew gets everything he deserves.