UPDATE: Dr. Paley thought a little more rotation was necessary so we have two more weeks of adjustments, but they should be easy as it doesn’t have far to go. Surgery to remove the pins in his fractured femur will be scheduled for February 25th and he will also remove one of the pins out of the left leg that is no longer necessary. We should be able to head back to our ol’ Kentucky home the day after. 🙂
As I start to put my thoughts together for this new post, it occurs to me that I have quite a lot to share. I’m not sure where to begin so I guess I’ll just vent current frustrations first and get my negativity out of the way.
I have become so fed up with having to change diapers. Changing Drew’s diapers leaves me out of breath and slightly sweaty after the several minutes of the hard physical labor it takes to change a diaper. Because of his brace, I can’t move his right leg to the side to open up an area for wiping. And removing the brace is a task in itself so no, I will not consider removing that thing five times a day and Drew would adamantly protest that idea as well. I can move his fixator leg to the side, which helps, but neither of his legs easily raise up so instead of the normal position a young child would assume while changing diapers, Drew’s legs must remain flat (or somewhat) on the floor. When it comes to removing the diaper, I used to slide it out from underneath him but that was only successful part of the time because oftentimes the little tab that connects the back to the front would scrape up against the pin in his hip causing him some pain. And, it’s a diaper after all so you certainly don’t want it to touch any part of his pins. So, lately, I’ve starting grabbing Drew under the arms and lifting him with one arm while I pull the diaper out from underneath him. But, he’s incredibly heavy and I’m hunched over while sitting on my knees and trying to maintain this lift so I can wipe him without setting his soiled behind onto the floor upon which he sits (he actually sits upon a sleeping bag for some cushion.) It kills my back, I can’t get a good view of his behind to ensure I’ve cleaned it thoroughly, squeezing my hands between such a small space between his brace and his fixator is awkward and I soil my fingers more than I’d like to admit. And, God forbid it’s a really REALLY soiled diaper! Oftentimes the sock he wears underneath his brace (which is as long as his leg) gets soiled so I have no choice bu to remove the brace and sock, replace the sock, wash the old one and replace the brace. Argh!!! All of this takes about five minutes. To change a diaper. And, that’s if I don’t have to take the brace off. I’m so DONE with it!!! I can’t wait until this stupid apparatus is gone and Drew can once again use the toilet. I said the other day and I’ll say again today as I’m fresh off of cleaning a massively messy diaper, I’m looking forward more to Drew being able to use the toilet and return to underwear more than walking! Whew. OK, feel a little better now.
Other big news are further complications with Drew’s heart. Because Drew missed his regular cardiologist appointment in Nashville, we saw a local pediatric cardiac surgeon who consulted with us and evaluated Drew’s current heart condition. Changes were noted and they weren’t changes for the good. It was thought that some coarctation was noted in Drew’s aorta (narrowing of the aortic valve) so we were referred to another cardiologist for further diagnosis. It is apparent that there is some slight coarctation and we would need to address it fairly soon. It’s nothing so serious that we have to immediately jump into cardiac surgery, at least we can wait until his left fixator is removed, but she said that 4-6 months is the most she would recommend waiting. So, one of our first objectives when we return to Kentucky is to be seen by Drew’s regular cardiologist for consult who then may or may not schedule heart surgery based on his own opinions when the fixator is removed. Poor little guy…get done with his legs and then what? ANOTHER admission to a hospital for surgery.
Just as we started to leave the office of the cardiologist, she noted some patechia (pin-point hemorrhages within his skin that look like little red dots…he has a patch or two here and there – normal for him considering his very mild blood disorder) and was a little concerned about endocarditis since he’s had a somewhat consistent fever for the last few weeks.) She wanted to go ahead and collect some blood, but it was Drew’s birthday and I just H-A-T-E-D to have to do that to him on. his. birthday so I talked her into letting us wait until Monday. Drew takes prophylactic antibiotics to prevent endocarditis and he isn’t demonstrating any of the other symptoms so I figured it could wait.
Drew’s birthday was on Wednesday and we celebrated (again) by enjoying some cookie pizzas. This was after the aforementioned cardiologist appointment which he was forced to visit on his birthday. Several of Drew’s aunts have sent some gift cards so Drew had a lot of fun picking out some toys. Thanks to Great Aunt Peggy and Uncle Johnny, Drew is enjoying a Power Ranger motorcycle action figure and a ray gun. Great Aunt Cindy and Judy and Uncle George and Kenny also sent gift cards or cash which Drew is saving up in his wallet. He has over $40!! Thanks guys! Of course, Yaya sent a birthday package which Drew stalked the package delivery personnel for days for by following them around the complex, “Are you going to come to my house? Do you have a package for me today?” 🙂
Speaking of picking out toys, I visited Wal-mart for some light grocery shopping and let Drew pick out a toy with a little bit of his money. He picked out Bey-wheelz which are little…I don’t know…spinning toys that boys like to play with these days and I think they try to knock each others’ Bey-wheelz out in this arena thing. I guess you can kind of think of it like a more macho and violent version of marbles. Drew insisted on having one but they aren’t really a toy that can be adapted for short arms. It requires two arms to work them and a long reach (it comes with a rip-cord thing to make it spin). But, I can’t tell him he can’t have them because he’s “incapable” of enjoying their true purpose. I am absolutely against giving him any idea that he is incapable of anything, regardless of how outlandish it is. But, on the same token, I don’t want to waste money and get him a toy that will last two minutes or make him feel bad because he can’t work it. What can you say to Drew to deny him the toy? I don’t know what the correct answer is, but I usually wuss out and just tell him “that’s for older kids.” I don’t know why, but I let him buy the Bey-wheel. I wasn’t able to get him to work it with me holding the toy and him pulling the cord, but I did teach him to just toss the wheel with his bare arm and he seems to enjoy watching it roll, even at its slow speed. So, I guess that is how to handle it.
Anyway, sorry, I know this post is all over the place but there is no way to tie all of these things together seamlessly so moving on…
Most importantly, this week, Friday actually, marked the LAST ADJUSTMENTS on his fixator!! I haven’t gotten confirmation from the surgeon expert yet, but his leg looks pretty damn straight and perfect to me! I can’t imagine they would give us additional days of adjustments to correct anything. Which is a good thing because with all of the showers, the diaper changes, the heavy lifting, the pain…I’m just so tired of it all. I’m just physically and emotionally exhausted. You know how when you are working on a project and you’ve been looking at the same thing day in and day out and by the time you get close to being done with it, you kind of want to cut corners and your expectation for perfection is lax because you are just sooooooooo ready to put it behind you and never think about it again? Yeah. That’s where I am right now. I’m just worn. out.
So, the fact that we have made what is probably the LAST adjustment on his fixator is a major accomplishment! It finally feels like the end is within reach. It will be so nice to just take one thing off of our “to do” list each day and not have to look at Drew’s face when we tell him it’s time for adjustments and won’t have to look at him as he struggles in pain. The majority of the pain will be gone with the end of the adjustments. Now, I expect we only have to wear the fixator for about 12 weeks (which is how long it took to get the leg in the correct position) and then he can finally have it removed. If it’s like last leg, he’ll go into a brace but I’m so excited for NO MORE FIXATORS!!!! If I could drink, I would have one the size of my office chair to that!
Seeing as we have come so far in our journey, it got me thinking about Drew before the surgery and Drew after the surgery. Our lives are completely different. I won’t say for better or for worse yet because we haven’t reached the end and my outlook on these last nine months would be biased by stress and anxiety. I will wait until the very end to make a judgement on the worth of these nine months. I wanted to share some pictures to illustrate how our lives have changed and how much Drew has changed. Enjoy!
Before surgeries, we enjoyed many activites….here is what our average day looked:
After the surgeries started, our lives changed dramatically. This is what it looks like now:
Drew has done a lot of growing up in almost nine months. People often mistook him, a four-year old, for a 2.5 to three-year old. But, all of these surgeries, therapies, stress and work has really aged him. Notice too how much weight he’s lost. Currently, he’s 15 lbs or more underweight.
Here is a picture of Drew several months with his classmates at preschool before we left to Florida. You can see how young he looked next to his peers of the same age:
Here is a picture of Drew that I think demonstrates the condition of his legs before the surgery. He is sitting down, but you have to remember that each leg is extended about as far as they ever went. Also, note the rotation in each foot. I could pull his legs and place his feet together so the tops of his feet laid perfectly flat against each other.
Now, here is a picture of his legs at the beginning of each correction and after the correction. His right leg took 10 weeks and his left one took 12 weeks (assuming Dr. Paley says they are perfect on Monday.) Again, note the severe bend in his leg and the angle of each foot.
We have an appointment with Dr. Paley on Monday and he’ll confirm whether or not his left leg is fully correct. If it weren’t for his dang right leg, we could have come home immediately after, but we still have to work on getting his right leg fully healed so the pins can be surgically removed. I’m anxious to know what to expect in the near future. I have tons of questions written down. I’m sure I won’t get most, if any, answers and I’m sure they’ll change over time, but I’m going to ask none-the-less. One thing Nathan mentioned today which I hadn’t come to think about myself, is what type of activities Drew will or will not be able to participate in once all of these surgeries are over with. As we understand it, Drew will be wearing braces on both legs “until growing stops” aka until he’s 17-20 years old. So, he’ll be able to walk, but will he be able to play any sports? (Perhaps he could remove the braces for certain activities) Can he go swimming? And one thought that made mine and Nathan’s heart skip a beat: will he be able to jump on a trampoline? It hurts my heart so bad to think that these activities might be out of the question. It would be so upsetting to find out he couldn’t enjoy these things he once did because of the braces on his legs. I would question whether these last nine months would have been worth it. Before the surgery, he could swim, he could easily maneuver independently from room to room, jump on a trampoline, ride on a skateboard, etc. I’m not sure that giving up these multiple abilities so he can do the ONE thing he couldn’t do before would be a win for us.
I guess it’s just a scary time right now. To anticipate what’s in the future. To trust the word of a doctor. To not see exactly how this is going to pan out for us. These nine months have been so hard, it can’t be over-stated. And, we know what Drew came from so it just doesn’t seem feasible that Drew can go from hopping on his butt to a boy with normal legs. Drew is a strong and determined boy, no doubt, but this boy had some very severe disabilities. It seems like it’s too much to expect him to go from that to what Dr. Paley insists will be a “normal” life. It feels like too much of a reach. We are essentially giving Drew’s future to this surgeon and to give a person THAT much trust is difficult from beginning to end.
I have a video that I made of a strut change that I recorded and narrated, but Drew has been hollaring for me for the last 20 minutes so I’ll have to add that later. Thanks everybody!