In summary from Part 1:
- Drew misses his friends and school miserably.
- We drove 1063 miles and 17 hours from Kentucky to Florida. It sucked, but didn’t go as bad as I had thought it was going to go.
- We love our new condo and had a day of fun before the real business began.
Monday started early with pre-op at the hospital. Originally, we had planned on all of us coming along, but after further consideration, I suggested Husband stay at the condo with Holden (he would be ineligible to take Drew because he (Husband) is recovering from hernia surgery so he is on strict no-heavy-lifting orders from the doctor. I just knew that Holden would do nothing but run around exploring and would constantly keep one of us separated from Drew thus one of us at any given moment wasn’t participating so why even bother with the hassle? And, I’m glad that I considered this because the day ended up turning out way more stressful than I had though it would.
First, we went downstairs for vitals and paperwork. It was pretty standard. The nurse mentioned we’d be seeing hematology later in the day, a routine step when you’re challenged with a blood disorder and a surgery on the docket, who would do a finger prick for a platelet check and a blood draw through his port for a CBC. This means two sticks. Albeit one is a finger prick, but don’t try to justify that with an 8-year old. This is a basic rundown of the conversation:
Me: “Can the platelets just be checked from the blood they collect for the CBC?”
Nurse: “No, platelets are typically checked via finger stick.”
Me: “I know, but instead of doing two sticks, can y’all just do everything in one stick?”
Nurse: “hospital jargon….blah blah…jargon jargon…avoiding question…”
Me: “I’m not saying NOT to test the platelets, I’m just saying since they’re planning on accessing the port and collecting blood for the CBC, can y’all just take a little extra blood to test the platelets and collect whatever you need for the CBC? That way Drew only has one stick instead of two.”
Nurse: “Hospital jargon…not really answering my question…jargon jargon…nonsense.”
Me: “I’m just so confused. I’m not really following.”
Nurse: “Continued jargon…”
Me: *Starting to feel like I’m just being bitchy* “Well, OK…I guess if it’s just too complicated, I guess we have to do both. I have no idea.”
It was like the idea of minimizing the stress and pain for a child patient was SO foreign that they have a mental block. Perhaps there was a medical reason to do both, but she was talking me like she thought I was graduating member of the College of Nursing. It seemed so simple to me. Not only is Drew’s experience improved slightly by not having to endure another needle prick, but I would think there would be cost savings as well. But, I guess then hospitals can’t charge you $470 for a finger stick.
Then we went upstairs to see Dr. Paley. They took x-rays, of course. Then we visited with Dr. Paley and John R., one of Dr. Paley’s PA’s. They discussed amongst themselves a few things about Drew’s leg. Dr. Paley then said he’d be placing a rod in his left leg to make it straight again. He was also going to shorten the femur by a few centimeters, which would also help with getting it straight and maybe he mentioned a couple of other things he would do that I didn’t really catch. But the big bomb was that he hadn’t decided yet whether he would take the rods out after 8 weeks or 12 weeks. And, that makes a huge difference because I already have the condo reserved for a period based on 8 weeks and Drew will miss much more of third grade if it ends up being the full 12 weeks.
After Dr. Paley, we went to another building for his third and final appointment of the day, Dr. Gowda at hematology. Because of Drew’s blood disorder associated with TAR Syndrome, his platelets have to be checked prior to major bleeding events. A higher platelet count means less bleeding so they must be checked and possibly transfused before surgery to minimize heavy bleeding. The last time Drew received platelets before a surgery was his first surgery with Dr. Paley and every following surgery, even those not involving the legs, his level was high enough that it wasn’t of concern. In fact, for the last couple of years, his platelet count has been almost normal so I was even thinking perhaps a platelet check was unnecessary at this point.
But, lo and behold, his platelets were actually on the lower end and need a transfusion! I was shocked to say the least! Darn it….we were both starving and this was supposed to be the end of our day, but now we had more to do. I quickly applied some Lidocaine (numbing medicine) to his port with anticipation of accessing it as it needed 45 minutes to an hour to work.
So, we went back to the main hospital. It was a long process of contacting the blood bank and requesting the platelets and then he hadn’t received product from this hospital in six months or more so they had to do all of this extra stuff. Then, they needed to access Drew’s port to do the transfusion (and get the CBC while they were at it.) By this point, we’d been at the hospital for seven hours or so so Drew was just done. Accessing the port was traumatic because Drew was tired and bitchy and hungry. I did my best to comfort him, but I couldn’t help but feel sorry for him because he was just so over it.
After about an hour, they finally started the transfusion process. It was an hour-long transfusion and then we had to stay for 30 minutes for observation afterwards to ensure no adverse reactions.
Finally, after a total of eleven hours at the hospital, we were discharged. And, just as I had been the previous two days, I wanted nothing more than a quiet, dark room to sleep. Both of us were physically and emotionally exhausted, but one of us is eight thus have the bounce back of a rubber ball and the other has the bounce back of a lead weight. And, again, this was the final few hours that Drew would be walking, unrestricted and pain-free and preparing to undergo a major surgery so it would be abusive to retreat back to the condo because *I* was too tired and inconvenienced.
So, we ate at Chick-Fil-A and immediately followed by Fun Depot where we rode go carts and played laser tag which was Drew’s favorite parts of the entire day. We played arcade games and I may have spent a little bit more than I wanted, but it was a treat for Drew after all so I dealt with it. Drew had a great time and despite my own exhaustion, I did have fun with Drew and enjoyed making his day. We let Drew stay up as late as possible so he’d have enough time to eat before going NPO (no solids) at midnight and he was really excited to eat cheesecake leftover from The Cheesecake Factory so close to bedtime, another treat reserved for only special occasions.
But, boy was I glad to get home. I was way too happy the day was over. At this point, I hadn’t even had a chance to shower since before leaving Kentucky, but being three-day’s soiled wasn’t enough motivation to risk waking Holden asleep on his pallet to take a shower so I gave the shower a wishful glance as I collapsed into bed for sleep. And, I looked forward to actually getting to sleep in since Drew’s surgery was unusually scheduled late in the morning.
Surely after being so sleep deprived and ran non-stop for so many days, I could get a complete night’s sleep right? Oh no. Holden says, “Screw that mess! I get the feeling she gets to sleep in this morning so let’s get up at 3:45 am!” I stumbled into the living room with quite a low opinion of life at this point.
Husband came and rescued me and took over with Holden so I could return to sleep, but, that didn’t last long because, damn hernia, I have to get Drew out of bed.
It seemed strange taking Drew to the hospital for surgery at sunlight. It’s always been dark, before sunrise before. We check-in and are called back shortly after. They access his port again and Drew does much better earning praise from nurses who declare him “her favorite of the day.” She commented profusely how cooperative and strong he was. It was a few hours wait while we waited for them to take Drew back.
I finally got dressed up in my foot covers, hair net and astronaut-like suit and walked back with Drew to the OR and held his hand as he drifted to sleep underneath the mask. I couldn’t help but catch a glimpse at some of the medical equipment displayed and shuddered. And, then we waited.
There was severe weather in the area and tornadoes were being spotted in surrounding counties. The lights flickered once so that was a little unsettling imagining Drew in a pitch black operating room. But the weather passed without anything else than torrential rain.
We were told it would be four-ish hours so we anxiously awaited updates about halfway through. One by one, patients’ families were called away to visit their loved ones until it was only Husband, Holden and I all alone in the waiting room. Kind of worked out that way because now there was less pressure about what Holden was up to so he could finally play with his trucks on the arms of chairs and peer out of the window anywhere he desired.
When it comes to getting updates, it seems as if we are always shafted. Someone came down and called the last family whilst telling us she’d be back for us, but she seemed to never come back. Finally she did quickly followed by Dr. Paley. He seemed very pleased with his work and said his “leg is straighter than it has ever been before!” He shortened the femur by 4 centimeters, but he didn’t remove the internal fixator on the tibia as planned because it would have been too much surgery for one day. And, the incision went from the hip all the way down to his knee! My eyes nearly fell out of my skull I was so shocked. His colleague was closing up which would take another hour to an hour and a half and then we could go see him.
I did the math in my head which determined that we’d be seeing Drew after Holden’s bedtime so I bit the bullet and decided to take Holden back to the condo to avoid disrupting his routine too much. I hated not seeing Drew right away, but messing up Holden’s routine never ends well.
I began thinking about that incision. He must be in so much pain! And, his poor skin! He’s going to look like he came out of The Game of Thrones. Husband texted me some pictures as requested and I finally went to bed.
Husband stayed the night with Drew and we traded spots early afternoon and here I am updating this blog while Drew watches Rio 2 on his portable DVD player. He is shockingly pleasant and agreeable. He’s woken from way easier procedures more disgruntled and pained than this. Maybe it’s because he’s on stronger pain medicine this time, but none-the-less, it relieved my worries about him. He’s administering his own pain meds with a button on-demand (it’s restricted so he doesn’t overdo it.) He’s been playing video games and he had me bring all of his art supplies that were gifted to him by his school friends and a new family friend back at home! Thanks for your love and support! I’ll keep you updated!