I think that we have adapted our lives pretty well to Drew’s TAR Syndrome. Oftentimes, I feel like our lives aren’t much different from the next American family. Obviously these times existed prior to Drew’s leg surgery, but overall I still mostly feel that we are a normal family. However, last night, TAR Syndrome really complicated what could have been a simple process.
As I mentioned, Drew has had a fever and a possible infection. Turns out, he has MRSA, a staph infection. Bad news. And, even worse, it’s resistant to his antibiotics. So, due to Drew’s heart condition and increased risk of endocarditis, Drew’s pediatrician ordered some blood work on Drew. It was necessary, but it didn’t make me dread it any less. I put it off for about as long as I could and finally had enough courage to make our way to the Union County Methodist Hospital. Drew absolutely insisted that he take his wheelchair and it’s nearly impossible to deny him that level of independence so of course I obliged him and loaded it up on the back of the truck. I hadn’t yet had the courage to tell him where we were going or why, not that I wouldn’t have told him the truth if he’d asked, but he didn’t so it was mum’s the word until then.
Even as we arrived at the hospital, Drew thought that he was going to physical therapy. I probably should have mentioned our true purpose then, but I knew if I did Drew would not willingly drive his wheelchair into the building. But, I did tell him we weren’t going to therapy. I just didn’t finish the sentence! We signed in and after a little bit of a wait a lab technician retrieved us and took us into the itty bitty blood draw room. It was here that I finally dropped the bomb and the fallout was as expected. I could tell the lab technician was kind of thrown off by eyeing this four-year-old child with a barbaric device drilled into one leg and shortened arms. He asked, “Where do they typically get blood?” Due to Drew’s short arms, it’s always been through his foot so the lab technician apparently had to have permission from a doctor to do it from the leg as there is an increased risk of clotting.
I didn’t see how we really had a choice, but whatever. So, we waited. And, waited. In this tiny little room and the temperature is getting warmer and warmer. Mind you, Drew is just distraught knowing that he is going to get stuck with a needle. Every once in a while, someone checks in on us and apologizes for the wait while the seek permission. Drew eventually cries himself to sleep. After about an hour of waiting in this small blood draw room, the lab technician comes back. He’s gotten permission from a local doctor but this doctor needs permission from another doctor and offers us a patient room while we wait. My reaction: Uhhh…no. I briskly tell them to just fax the order to Henderson and I’ll run there in the morning and get it done there. Drew was relieved naturally.
So, after the physical labor of loading, unloading and then re-loading Drew’s wheelchair and anticipating driving to Henderson (while gas was almost $4/gallon) I had reached my limit. I had promised Drew a trip to Subway so off we went. Just as I walk around to the back of my truck to begin the arduous process of unloading Drew’s wheelchair, my phone rang. It was the on-call pediatrician confused about our situation. He had been the second doctor they required permission from (and even he wasn’t sure why) and he had everything straightened out. I told him that I was planning on just going tomorrow morning and getting it taken care of in Henderson but he really insisted on us going back. We needed to have the blood drawn before he starts his antibiotics and he needed to start the antibiotics right away. Even after I told him how it was going to break Drew’s heart. But it was very important we get it done. Tonight.
So, if I thought I was dreading the blood draw the first time, I was REALLY dreading breaking the news to Drew that his relief was short-lived. We were already at Subway so we went ahead and ate. By the way, Drew made me unload the wheelchair from the back of the truck (and I really need to video this process because it easily adds 10-15 minutes, each way, to my errands) so he could drive the 25 feet into the store and sit in a booth.
Luckily, my beloved mother-in-law volunteered to go out with me to the hospital and I was very happy to have the company. And, turns out I needed it! At first we were excited that Drew’s own 2nd cousin was going to do the stick and I know he tried very hard. Twice. But Drew has always been a hard stick. In the past, even when they got blood almost half of the time the blood would clot or would just stop flowing. So, I anxiously awaited for the stream of blood through the tube signaling a successful first attempt. No go. Two tries. No go. Drew, of course, was beyond hysterical.
After a break, a second nurse tried. That didn’t go well either. By this time it was 9:00 and we were told about another nurse who was coming in at 9:30. Not wanting to give up and wanting to be sure we did everything we could to get Drew the medical attention he would need, I begrudgingly decided to hang in there. We were able to keep Drew entertained and surprisingly, he was in pretty good spirits. 9:30 rolls around and I’m eyeing the door, waiting for it to crack open revealing Nurse Bloodsucker and Drew reeling in horror. 9:35, no nurse. 9:40, no nurse. 9:45, no nurse. At about 9:51, I committed to getting up and walking out at 10:00 of the nurse didn’t show up and secretly, I was hoping she wouldn’t. But, 9:53, in she walks. All business.
Drew’s second cousin came in once more to help out and they searched and searched for a good place. We all wanted four times to be enough for this poor little boy. They found a pretty good vein below his knee, right were the thigh turns into the knee and went for it. Drew stiffened in pain and screamed. The night’s long torturous events were streaming down my face. And, when we finally saw the red stream flow down the tube, it was like we had discovered water on Mars. Finally. 10:20, we walked out of Union County Methodist Hospital with a Tweety Bird band-aid on Drew’s 4th puncture.
I haven’t heard any results yet and I really don’t know what exactly they are going to tell us. So, we’ll wait and see.
So, all of this happened because Drew’s short arms. Sigh. Of all of the things that we’ve been through, I feel like this has been the biggest hinderance for Drew. Blood draws. And, he has thrombocytapenia, meaning he’s a free bleeder! The irony of it all is just too much.