Sometimes, I just don’t have a beautifully thought out riveting opener to my posts to pull you in.
And, this one won’t be an exception.
I’m just going to jump right on in like you would a pool after a few cool evenings.
After much hassle and many miles, we finally got Drew’s hip piece fixed up. In the past, the hip piece was permanently attached to the leg braces (to keep Drew’s feet facing forward thus encouraging proper alignment) via screws. When we got word from Drew’s surgeon that he can start wearing the hip piece only at night, it became a problem when the screws and their receptacles became stripped out preventing replacement of the hip piece at night. So began my search for a better solution and after a few misunderstandings, we finally managed to have a snap on/snap off system installed onto his braces to make daily removal and replacement easier.
It started out really difficult. First, Drew had gotten spoiled by the many consecutive nights without the restrictive hip piece due to our inability to attach it. I do admit, it does look to be a very uncomfortable experience to be so restricted during sleep so Drew didn’t complain a bit for the month without it. But, once we got the hip piece put back on, the sudden loss of freedom was difficult for Drew to accept. The first night was the worst. In fact, he didn’t even wear it but three or four hours before I stormed in there in exasperation and ripped it off of him. The second night and every night after was better. It’s important to remember that whenever any type of change is made to orthotics, no matter how trivial the change is (not that this hip piece was trivial, but I speak of other minor adjustments we’ve made to the braces that were, to my surprise and confusion, met with the same disgruntled attitude)…not matter how trivial the change is, it takes time to adjust.
While we don’t have to worry about screws becoming stripped out, the snap on/snap off feature isn’t as convenient as I hoped. It’s a little bit of a task that requires pushing a button in and then down and then you have to PERFECTLY line up the “teeth” and snap it in to place. It sounds simple, but working with rigid metal and plastic and having to have two pieces line up perfectly and facing the right way is only easy on paper. Really, I guess, the only benefit is we don’t have to worry about constantly replacing screws. I’m still hoping that with practice and once the gears are broken in, it’ll become easier.
Drew just completed his 11th leg surgery last week with Dr. Paley. As I said before, Daddy escorted Drew to Florida for this surgery despite my prayers that Daddy break his right foot requiring us to switch roles so he stay home and *I* take Drew. And, though he did a fine job (He gets a B-. More on that later), I won’t be so quick to agree to let Drew outside of my reach for another surgery again.
Drew and Daddy left on Saturday morning, staying the night in Georgia less than an hour from the Florida line and making it to West Palm Beach around 4 pm on Sunday.
Monday, Drew had three doctor appointments: the hematologist for a platelet count and two pre-ops. I anxiously waited by my phone for updates and Nathan’s strict instructions to take pictures as I’m an avid scrapbooker (not to mention this blog!)
First up, the hematologist. Drew requires platelet checks for any surgery due to his syndrome. Early in age, they were much, much lower at any given time, but around 6 years old or so, Drew started maintaining over 100K on a regular basis (normal is between 150-400k). Drew’s levels were uncharacteristically low last year during his leg surgeries, but we shrugged it off as perhaps a virus he was getting over (viruses can drop your levels). Then, this summer they were checked and they were 70-something. Hmph. Odd. And then this appointment, Drew was 76K. He hasn’t maintained levels that low since he was around four. So, a platelet transfusion was needed.
TAR comes with many different challenges, but the worst, in any 9-year-old kid’s opinion I think, is the desperate and repetitive search for a good vein and how they search for a vein? By sticking you a bunch of times. I remember as a kid having to go for vaccinations and I can recall with great emotion exactly how terrified I was of shots. It’s no lie that I could have lost my arm in a horrific accident and I would have hidden it from my mom for fear of having to get a shot at the hospital so to put myself in Drew’s shoes, having to be subject to not only regular vaccinations but frequent blood draws, makes my inner child absolutely reel in horror.
In the end, they only attempted once and failed then decided not to continue the torture as Drew is that hysterical child anytime a needle is in the equation. It was decided to just do the transfusion while under anesthesia before surgery starts.
By this point, Drew and Daddy had been in the hospital the greater portion of the day. Finally, they went to clinic and got x-rays and a quick in-and-out visit from Dr. Paley. Nathan assured me it was all routine and Dr. Paley wasn’t even in there long enough to take a picture of any examination, a shot I always make a point to get when I’m with Drew.
After hospital chores, Daddy took Drew to putt-putt golf for some much needed entertainment.
Then, Wednesday was surgery time. The surgery was outpatient and typically hardware-removals are very minor in nature so we didn’t anticipate any difficulty recovering from this surgery. Drew has had surgeries in the past – minor ones – in which he was like a normal boy, activity and everything, within hours of the surgery being completed so that’s what we expected with this one.
But, we were a little taken back when they said they were going to admit Drew overnight. Nothing had happened, but I guess they just wanted to monitor him due to his tendency for bleeding. So, the plan was for Nathan and Drew to get discharged the next morning and start their long journey home.
Only, morning came and his hemoglobin was low and they needed to do another blood transfusion. Drew was also heavily reliant on serious pain medication so they decided to keep Drew a second night.
It was really tough being at home throughout this period – not being able to comfort Drew during his shots, not being able to give him hugs and cuddles in real-time when he was scared or in pain. To listen to Drew in pain and see him look so helpless in pictures Daddy sent was unbearable. Not to mention that I have a need for more reassurance and detailed information that Daddy is. What I want to know any given hour: what is Drew doing right now? What would you rate his pain? Have any doctors come by? What did they say word for word? How long were they in there? Did they seem nonchalant as if nothing is out of the ordinary or did you pick up on any weird vibe? What did he eat? Did he eat? Do the nurses seem happy and ambitious or just doing the routine? What did you and Drew talk about? Has he said he misses me? etc. What daddy texts: Drew is fine.
Friday morning, they decided to give Drew ANOTHER platelet transfusion as he had already eaten up through the majority of his first transfusion so they wanted to boost him one more time and then finally they were discharged and Daddy surprised me by driving all the way through the night making it home Saturday morning instead of evening. He did manage to capitalize on his surprise by informing me that his transmission had failed having deserted him on the side of the interstate in Central Georgia. Just about the time my mind started racing for solutions, the doorbell rang relieving me of my panic as I saw a giggling Drew and a proud Nathan at the door.
This surgery has definitely been much tougher than we thought. Two nights admitted to the hospital, three transfusions. He is definitely not back to his normal self even almost a week after surgery.
Once I had him home, I quickly noticed several things. His left leg, the one that has been the most sensitive and source of most of his discomfort, was significantly swollen. And, most interestingly, he has a whole incision on his knee that I can’t explain. During the surgery, he had an internal fixator on each femur removed which would account for the two bandaged incisions on the sides of the outer thighs. He also had a small rod placed into his femur to provide durability for weakened bones which accounted for bandaged incisions on each hip. He had a bandaged incision on his left ankle where another internal fixator was removed which was expected. But what the heck was done to his knee?!? It can’t be the rod because he had a rod put in both femurs and his right doesn’t have a matching incision, can it? I have no clue.
So, all in all, he is sporting SIX new incisions-soon-to-be-scars. I’m just anxious to know if these new scars will be keloid scars which seems to be the result of all surgeries since 2016 as if each human is allotted a certain number of nice flat scars until a certain number is reached and anything in excess blows up to be this raised, red and bulging scar.
He’s still very sensitive to pain or movement and has yet to walk (well, as I mentioned before, his legs are too swollen for his braces so the point is moot). I sure hope this doesn’t last long. It’s difficult to accept this hard recovery when we went into this thinking it was going to be a breeze.
The most difficult thing to contend with is Drew’s weight. I don’t know if it’s because of the excess fluid and swelling in his body that has made him so much heavier or if it’s just his limited range and ultra-sensitivity to movement, but it is unbearable lifting him. His weight has something I’ve groaned about before, but now it’s almost impossible for me to lift him. I can lift him, albeit he balks in pain as I am not as graceful as Daddy and can’t seem to avoid applying pressure in the wrong areas, but its to the point where I don’t feel safe – like, I’m at high risk of accidentally dropping him as my arms involuntarily collapse or he just slides out of my weak grip. And, dropping him at anytime would be horrible, but with six fresh incisions?!? I don’t even want to think about it. Daddy goes back to work tomorrow leaving me to care for him by myself. I just really do not know what to do. One thing for sure: I’m eliminating baths in the tub as I’m sure I won’t be able to lift him from the tub. I guess it’ll just be sponge baths until Daddy gets home. And, hopefully he’ll bounce back and his range and comfort will tremendously improve thus making lifting him easier.
So, we’ll see Dr. Paley again in a year and other than a few follow-up appointments here and there for heart and for ears in the next 3-6 months, this should be our last big event for a while. I’m anticipating routine smooth-sailing with few medical needs for quite a while! *knock on wood*
Lastly, Drew wants to play basketball this year. And, it’s such a conundrum. I love that Drew is enthusiastic and doesn’t let his disability define him, but at what point do we draw a line? I mean, it’s great he wants to be involved in sports and we certainly want to encourage him to do that – he plays soccer for the YMCA in our community, but basketball?!? I just don’t see how it’s feasible. He can throw light airy balls in front of him with little issue. But, a heavy basketball, into a hoop several feet above his head? Not so much. He’s not the fastest runner nor can he actually dribble a basketball. Drew insists he can “slap the ball out of their hands”.
All I can think of his how his teammates or other players may feel. I mean, I love Drew and there are many things he’s really good at and you know I think the world of him, but I dunno, I’m kind of thinking that Drew might hinder the team a little bit. They’re down an effective player essentially and what’s the coach to do when Drew’s not able to participate in a certain drill due to restrictions of his braces, arms, or other? I don’t want the coach to have to change anything because of Drew and I know that nobody, including the coach, wants to exclude Drew. And, I can imagine that other parents might internally roll their eyes at the parents who just can’t accept the limitations of their child and weight their team down.
I have to admit, I used to be a member of a certain group on Facebook for families with special needs children and tips/advice for accommodations at theme parks and tourist attractions (I joined before taking Drew to Disney World). And, it was the last straw for me when a parent asked for advice for taking their severely epileptic child whose main triggers were heat, flashing lights, stress, and fast/sudden movements to Disney World. Do you get me? They wanted advice to make a trip to Disney World a success for their child who suffers severe seizures due to HEAT (Their planned trip was in JULY!!! in Florida!!), FLASHING LIGHTS (Um, hello!), stress (have you ever BEEN to DW?!?) and FAST MOVEMENTS (at a theme park. Theme. Park.) I have to admit, I was very internally judgy (I didn’t say anything like an internet troll, I just scrolled right on up to the “Leave Group” option.) So, I feel like that stubborn parent is ME considering enrolling Drew in basketball.
We may have an “out” though: Drew has yet to fully recover from last week’s surgery. He hasn’t been able to walk, a key component to playing basketball and applications are due in two weeks so MAYBE he won’t be in good enough condition by then and will be forced to sit this one out. I mean, if he’s walking and wants to join, I’m going to let him because I certainly don’t want to make him feel inferior or incapable and my desire for him to be confident and positive exceeds my unease, but I will be a tiny bit relieved if I don’t have to walk in and face the competitive parents in the gym.