Well, surgery was completed Tuesday in a 5-hour procedure and Drew was admitted to the hospital for two nights as expected. I don’t know what is worse: the actual surgery or hospital stays.
Nathan and I constantly took turns staying with Drew. Nathan would sleep over in the pull-out recliner in Drew’s room each night and I would relieve him about 10-11 am each morning. He’d meet me up front in the parking lot, he’d give me a run down of all the night’s events and instructions for the day, we’d quickly hug and I’d go upstairs to Drew and Daddy would come home with Holden for the day. And, then, about 7:30 pm, Daddy would return to the hospital and we’d once again meet up front in the parking lot where I’d give him the same run down, quick hug and I would return home with Holden while Daddy stayed with Drew. It was a constant shift rotation. The 1-3 minutes at each shift change was the only time Nathan and I were together and I really began to miss my husband!
Holden has been doing better than expected. As I’ve explained before, Holden has a predictable and consistent routine at home, but problems manifest in sleep disruptions when outside of the home. He goes to bed late, he has frequent mid-night wake-ups, and too early wake-up calls. I dreaded nighttime routine with Holden each night in our new condo unsure of whether I’d get any sleep. But, he goes to bed cooperatively. However, unlike at home, he wakes up between 1:30 am and 3:45 am and because we don’t have an actual crib, I pull him into bed with me where he finishes his night asleep. This seems to be the new consistent routine and I’m nervous that this will become a new habit that will carry over whenever we return home to Kentucky. Our bed is much smaller at home and not that I have opinions about co-sleeping, but nighttime is pretty much the ONLY time that I have a lot of personal space and lack of dependents begging for my attention so I kind of want to keep my nights sacred.
Hospital stays are exhausting. The furniture is uncomfortable. There is no storage space for personal belongings so everything is frustratingly haphazardly placed about the room and constantly tripped on. Hospital rooms have a distinctive smell that is on everything: your pillow, your chair, your cups and then it sticks to you. Constant interruptions from nurses coming in for vitals. The food….well, there is just nothing I could say that would accurately illustrate how unfortunate it is. Then, you have your son, in pain, who groans and whimpers and you just sit next to his bed helplessly unable to make it better for him.
The first day at the hospital was pretty good. I was relieved to see Drew so agreeable and pleasant, seemingly not in as much pain as I anticipated. But, early Wednesday they worked to begin weaning him off of patient-controlled morphine (where he’d click a button to administer medicine as he desired) with hopes of him taking slightly less serious pain medicine orally. Drew’s pain wasn’t quite as controlled with the new medicine as before so Drew slowly went downhill. He had a pretty restless night of sleep on Wednesday night.
Thursday, as I was present with him in the hospital, they decided to move him out of the bed for the first time. All of his blankets and sheets he was laying on came with him from surgery so they were covered in iodine, blood, discharge, urine, and everything nasty and smelly so it was imperative that they change the bedding. Of course, moving Drew would be beneficial for him as well, but Drew was adamant to not be moved. His leg was extremely sensitive and he was pretty vocal in his disapproval to move. But, we did manage to get him into a wheelchair, but not without dramatic outbursts, understandably, from Drew after which he emphatically said he wanted to stay in the wheelchair forever and never return to the bed.
We took advantage of his new-found freedom and wheeled him and his IV pole to the playroom, but, as is my luck, the air conditioning had broken, naturally, right before we nearly killed ourselves lifting a very heavy and very inflexible Drew into the wheelchair and Drew, with his outbursts, had gotten quite worked up so we were both sweating uncontrollably in this sauna. We retreated back to the room quickly where Drew napped in his wheelchair.
Shortly after, PT returned to get him back into the bed. Drew had made it very clear he didn’t want to be moved in the first place and once he was moved, against his will, he was even more emphatic about not moving again, but alas, he didn’t really have a choice. He became hysterical and he actually started shivering uncontrollably, despite not being cold. His whole body shook involuntarily and Drew gasped for air in sheer terror at the thought of the oncoming pain. I wanted to chase the staff away and shield my child, but I knew this was all part of the process. We did manage to get Drew back into bed where I sat next to him and held him as he cried uncontrollably and begged to never have surgery again. He’d whimper, “Mom, why did this have to happen?!?” and he’d collapse into my arms and the pain in my throat from withholding my own emotions was almost too much to bear. Thoughts of being right back in this very same place two weeks from now doing his other leg flashed in my mind. How can we possibly survive this?!?
It was overwhelming cradling Drew as he fought these emotions of pain and fear and exhaustion. He’s eight and while his peers are in school at the moment, learning about math or visiting the library, here Drew is, 1000 miles away from friends in a hospital bed with unbearable pain and drain tubes and IVs and morphine enduring surgery after surgery. Everybody else gets to walk without having to endure this struggle, but not Drew. Drew was dealt a difficult hand and in this moment, he’s taking it personal. He’s feeling his weakest and wanting to give up, not sure if he can do it anymore. And, there’s nothing I can say to make the pain go away. Nothing I can say to make it better or easier. I must simply carry forward with this plan knowing just how difficult this is on Drew. To cause your child so much pain is excruciating. And, through all of this, I must contain my own emotion so I can remain strong for him, so he doesn’t worry that something is wrong. My remaining strong is the only positive light he has to understand things will be alright eventually, but it’s physically painful to not cry. It’s physically painful to breathe in my stress and emotion so it doesn’t come pouring out.
Thursday was a very bad day.
We were all looking forward to being discharged eventually. His drain tubes were still too full at each emptying to be discharged so we continued to manage the pain as best as we could while we waited. Finally, Friday, Drew’s drain tubes had almost completely stopped draining so it was time to remove them. Anytime anything is pulled off or out of Drew, whether it be tape or drain tubes, it is a trial. It wasn’t without tears and anger when the doctor removed the tubes and the same for Drew’s port IV and IV in his ankle. By the end of it all, Drew was disgruntled and over it all. But, we were finally going home.
Nathan came to the hospital to pick us up. We got Drew into the wheelchair, with many objections from Drew and rolled him and all of our stuff to our awaiting truck and then I nervously looked at the empty back seat just wondering how we were going to do this. Drew’s leg, one, is extremely sensitive to movement or pressure. Plus, it’s stuck straight out, unable to bend due to the new rod in his leg. He has no ability to lift his leg voluntarily. Drew weighs 63 pounds, but I swear this rod must, in itself, must weigh 20 pounds because Drew was so utterly heavy to carry, but I’m sure his inflexibility and sensitivity make it seem as if he’s heavier than he really is. With the help of a nurse, we kind of danced around trying to find an optimal strategy for lifting him out of the wheelchair and into the back seat causing as little pain as possible, which would still be a LOT of pain. By the time we got him in there, Drew was crying and groaning in pain, I was out of breath, and Nathan, on strict “no heavy lifting” orders due to a recent hernia surgery had no choice but to take the risk of lifting Drew when there was no other choice. And, then we had to get him OUT of the truck, by ourselves, once we got home where Nathan, once again, had to assume the risk and causing insurmountable pain for Drew once more. By the time we were home, I felt like I had just competed in a Strongman competition.
We’ve been home from the hospital for a day now and so far so good. Drew has taken his pain medicine every four hours, the earliest as dictated on the prescription, up until this morning when he was able to go six hours without complaint so we were encouraged that it seems as if they pain is getting a tad easier.
We haven’t exactly figured out how to dress him yet. One leg is stuck straight out and the other is OK and shimmying a pair of underwear and shorts up a log of a leg that causes pain at the slightest movement seems too overwhelming right now. I guess I’ll wait a few days until the pain subsides before we take on that challenge. We have five days until we’ll be forced to bring him in public for a doctor appointment so hopefully it’ll be manageable then.
During our hospital stay, Dr. Paley asked that we come two weeks prior to Drew’s third surgery, which is planned to remove these rods being placed. So, for the first time, I pulled out my calendar to decide how this would affect our agenda. Currently, we’re planning on staying in Florida until a week after surgery #2 so we have our condo reserved until June 13th at which point we were going to return home to Kentucky for about a month while we wait for the weeks to pass to remove the rods then drive back down to Florida right before surgery #3 and stay for six weeks. So, I pull out my calendar and now that we’re being asked to come two weeks earlier than expected, that only leaves us being in Kentucky during that downtime period two weeks. So, we’d make a miserable 1000 mile drive back to Kentucky and then a mere two weeks later repeat. I made no secret as to how much I hated and dreaded the initial drive down here so I threw my head back, facing the skies above me and mentally shouted, “NOOOOOOOOO!!!!” to the heavens above.
I cautiously explained our dilemma to Nathan expecting him to reject a notion of nixing the return trip to Kentucky in favor of just staying, but I was delighted when he agreed the return trip to Kentucky no longer made sense. We calculated the financial impact of extending our stay in our condo and if we change our plans of paying off some debt we had earmarked a sum of money for, we could make this new plan work. So, now our plans are to remain in Florida the entire duration of Drew’s surgical process which puts us back into Kentucky around mid-August, assuming things go as planned. And, you see just how well “planning” goes for us so far so who really knows.
One other battle we’ve had to endure while here is this drama with my truck. We drove down here in my truck not thinking it would mean anything, but apparently there is a rule that trucks, even personal trucks – not just commercial, are not permitted to park overnight on these grounds. Don’t ask me why. I have no idea. But, the first few mornings here in Florida, I woke with a warning attached to my truck indicating that I needed to resolve the issue or be towed. I immediately escalated with our landlord who has been working with management to get a special exception made for my truck which involved a letter from Dr. Paley and a trip to the management office for an official document, etc. I thought all was well as I’ve gone a few days without a ticket on my window until this morning when Nathan finds a large red WARNING sticker on the window, complete with the annoying glue and shreds of paper that aren’t easily removed from glass, which indicates being towed is imminent. An emergency text to our landlord who quickly escalated and resolved it once again. But, I still fear that one day I’ll wake up and my truck won’t be there one day as perhaps one security person was left out of the loop of this unique situation with my truck. This is a perfect example of how my life goes: absolutely nothing can go as planned and must be as f&*king difficult as it possibly can as if I’m a tiny ant under some magnifying glass being wielded by the neighborhood Helion.