Well…that was something.
Wow. Hip surgery. We are over three weeks out from the procedure and I feel like it’s been one very, very long day. For most of the month, sleep hasn’t been divided between day and night, but rather hour by hour, shift by shift, hot coffee by iced coffee, and one very loud song after another (Abi’ choice.)
Tuesday night (day of the procedure) was horrendous. While we are always SO thankful to be at the most glorious of children’s hospitals – truly- if a hospital can be welcoming and warm and safe and pleasant and everything you could possibly hope for your child (and YOU while you’re there) – this is it. HOWEVER, surgery is surgery.
Immediately after the procedure, Abi woke up well(!!!)… and even smiled(!!!!!!!) Considering our awful history with anesthesia this was an incredible feat. We were even able to wheel her bed out of the post-op area, up 5 floors, and into her private room without any fuss. Amazing! By the time my family got to the room, she was still calm. Incredible! But then the fog subsided and the pain rushed in. Abi began crying and it was uncontrollable. By 9:30 she was still screaming and we were all talking to the nurses about what pain meds we could give, how to best position her body cast, etc. etc. The wonderful nurses kept saying, “This is to be expected. Don’t panic.” And Sean and I kept nodding and saying, “Okay- but surely there’s something here that can just knock her out and let her sleep.” But turns out, all those “drowsy inducing meds” had already been given… and since there’s a limit on what a 37pound body can take- this current screaming was just our reality. [Deep breath.]
About 9:45 I got a call from my father. Sean was beside Abi so I stepped into the bathroom to try to hear my dad speak over Abi’s screams. He told me that my beloved grandfather had just passed away.
I hung up the phone and the intensity of both events, ran over me. Sean told me to take some time to go to the chapel downstairs, while he stayed with Abi. I boohooed my way down the hall, past the nurses, through the empty 8th floor lobby, and into the elevator heading down to the hospital’s beautiful all-night chapel.
When I got there nobody was there, but the lights were still on, and the candles still lit. I’m so thankful for that chapel. After what felt like a lifetime, but was probably only about 15 minutes, I pulled myself together and headed back up to the 8th floor. When I entered our room it was a no better a site than when I left. But now the muscle spasms had set in. For sake of not writing an entire novel, I’ll limit it to this: a body that has just undergone major surgery + muscle spasms occurring in 2 second intervals + body cast = fresh hell. With every spasm came it’s own scream. Scream. Quiet. Scream. Quiet. I had been warned about ‘the spasms” but I hadn’t prepared myself for this type of intensity. I now see why the surgeon wanted to get Abi’s high muscle tone under control before the surgery, because having spastic muscles adds a new flavor to this spasmic nightmare. It was so constant and frequent that to the average passerby it might have looked like a seizure.
Sean and I took turns laying in bed with her, holding her limbs as tight to her core as possible, so that when the spasm would come her arms wouldn’t flail completely out, causing more pain. Every two hours we changed positions, and this continued through the night. Eventually, the screams turned to grunts. And then the spasms would stop…for up to 30 minutes. Then someone would open the door or come to give a med and then BAM. Spasm. Scream. Spasm. Scream.
In the days that followed, the spasms became less and less and we saw our first smile. We were ecstatic.
Sleep continued to feel like sensory warfare. The nurses were so wonderful to work with our requests of “Can we not get blood now? She just fell asleep” and “Is it absolutely necessary we take her vitals at 2am? She just calmed down.” Pediatric nurses deserve a gold medal for being the first line of defense on the frontlines of trauma. Parents are stressed, kids are screaming, and the first person you talk to for any and every need is a nurse. I imagine that’s a lot of pressure. At one point I asked one of our fabulous nurses if she would consider coming home with us. And later when another nurse got Abi’s blood drawn on the first try (a monumental task) I asked her what she would like for Christmas.
Sean and I decided the only way to get through the nights was to take turns. Every two hours our phone alarms would vibrate and one of us would tap in while the other tapped out. The parent on duty kept the headphones out of their ears, and the parent “off-duty” curled up with their headphones blaring so loudly that even a scream wouldn’t wake them up. (Thank you Beyonce.)
Props to parents who are running the hospital nights solo. Honestly. All the gold stars, fairy dust, and primal courage belong to you.
Throughout the week, I was also wrapping my mind around my grandfather’s passing. I was so fortunate to be able to attend two services for him. The bonus of being in the hospital was that I was already downtown and only minutes away from the services. At one point my mother stepped in so Sean could attend the burial with me.
Friday morning as I was getting dressed for the funeral, I went over to change Abi. We were hopefully being discharged that day so Sean was staying back to deal with the details while I went to the final service. The nurse was giving morning meds and Sean was sleeping… And then I saw it. Abi had gotten sick and ruined her body cast. Ruined it. The sweet older nurse heard a slew of words come out of my mouth that aren’t what I’d imagine typical of how she begins her days, but never-the-less appropriate. Sean kept saying, “Get dressed, I’ll figure this out. Go be present with your family, we’re in the right place to handle this. GO!” I kept cleaning her up and saying, “We need a new cast”, and Sean kept looking at the clock telling me I was running out of time and to stop and get myself ready. And so I threw on my dress, grabbed a granola bar and as I walked out of the room to attend the funeral, I looked back to see Abi completely asleep in Sean’s arms, sitting in an entirely soiled body cast, with Sean motioning to me to hurry and not worry. (And all the awards from all the places go to Sean McConnell.) Shortly thereafter my mother arrived at the hospital to help Sean, and before I even got back, Abi was in a new cast. It was Good Friday. The fact that the surgeon was even there in the building is a miracle to me.
This new cast looked a lot different and felt like a major adjustment. Rather than being able to turn her nicely and keep one leg totally free, they voted to go with a different design that would allow us more freedom in case she got sick again. This was oh-so-wise, because she did. The bonus of the new cast is that it doesn’t go up her whole torso. The downfall is it’s on both legs, is as wide as a doorframe (I’m not kidding- We literally turn her sideways to go through doors), and has been more difficult to position her comfortably.
Regardless, I’m just so thankful we were there when the problem arose. By nightfall the memorial services were over, the new cast was done, and we were ready to go home. Since all of the pain meds were being administered via Abi’s feeding tube at that point, (and not IV), we requested allowance to discharge at 4:30 (the doctors agreed) and by 7:00 I was closing the hospital pharmacy down with all of our new meds. (23 doses a day when you include our typical meds to be exact.)
They even locked the doors with me inside at closing time and had 3 pharmacists working on transferring all our meds to liquids, as it somehow slipped through the cracks that crushing tablets and getting them through her tube (that many of them) would be a logistical cluster. Thankfully Sean noticed this blunder around 5pm when he originally went to pick up the meds. He mentioned his concern and the person on staff said, “Haven’t you crushed tablets before?” I wasn’t there, but whatever Sean said or did in response to that absurdity made all the tablets start turning into liquids very quickly. When I returned at 6:30pm, EVERYONE the doctors, nurses, pharmacists, were working overtime to help us get what we needed. I was so glad Sean caught the issue and the entire staff stayed to make it happen.
By 7:15 I was leaving the closed pharmacy, running upstairs with the meds, and at 7:20 my mom and I grabbed all the bags, Sean grabbed Abi out of the hospital bed, and we bolted. We waved to the nurses and thanked them as we trotted to the elevator. Sean held Abi down the 6 floors and out to the van (which is no easy task), I threw open the van doors, Sean and Abi slid inside (thank God my friend Alison had told me beforehand to take a captain seat out, making that back bench more accessible) and we high-tailed it home.
From that point on- it was a mishmash of good days and harder days.
On day 3 (or was it 7? I don’t know.) We rushed to the doctor because Abi was not feeling well and signs were pointing towards a serious GI infection. The doctor got us in immediately, and Sean wheeled me in the rented wheelchair, while I held Abi in my lap through the building. When blood work was needed, they did it right there in the room and hand delivered it to the lab. (Rather than sending us to the lab that was in a different part of the building. YES.)
At one point the pediatrician asked us if we would like a drink. Sean and I both agreed, and ten minutes later she returned- purse in hand with cokes. She had LEFT THE CLINIC AND GONE TO BUY US SODAS.
No words. So thankful.
On the spot they were able to tell us the bloodwork looked great (this was I think to everyone’s true surprise) and we were able to go home and monitor from there. I was ecstatic. I had it in my mind another hospital stay was looming and this wonderful surprise had us all cheering.
Since then each day has gotten a little easier, and as soon as we finished all the pain meds the signs of her GI infection (which turned out to not exist) ceased.
Sleep remains a challenge, but is ENORMOUSLY better than it was a few weeks ago. For two weeks we were averaging around 2 to 4 hours of sleep a night. (Broken up- not all at the same time). But as of last night, I slept from 4:45am to 8:30 STRAIGHT (all the hallelujahs). Thankfully my mom came for a handful of nights after Sean went back on the road, which helped with the post-surgery-life-at-home transition.
The first afternoon that it was just me and Abi, a torrential rain came that lasted for three days. It was the perfect way to totally hibernate-to sink into the current situation, find new movies on Netflix, let the dogs curl up at our feet, relish in the fact that our chickens had just started laying eggs (YES!), draw the curtains, listen to the rain (do I hear a Judd’s song in there?) and sleep when we could.
And now, 3 weeks later, Abi’s comfortable when she’s still but enormously uneasy when she’s being moved. Even an inch to the left is an effort we have to prepare her for, count down, hold our breath, and make as quick as possible. The nurses I’ve spoken to feel this is due to the nature of the cast we are in- and that seems about right.
Hopefully we will see the surgeon tomorrow and get an update. Am I looking forward to the car ride? No. Am I looking forward to getting some answers on where to go from here? YES.