My son’s skull no longer has a large hole in it.
His surgery on Wednesday was a success and he is recovering well. I want, as always, to offer thanks to all my friends and family who sent messages of love and support and who have been with me not just during the last two days but over the last four years.
When a much-dreaded event has finally passed, it is only then that you realize how it has been haunting you. Jerking you awake with a start of fear in the middle of the night, anxious little voices worming their way into your conscious thoughts at any moment throughout each day. This surgery has now been booked for a couple of months, and not a day has gone past that I haven’t thought dire things about it. But it is over. Having leapt hand-in-hand over this particular hurdle, we are collectively moving on and hopeful that this will mean good changes for the Bean.
Wednesday morning Craig woke him at 4:45 to give him his last drink of water before his 8:00 am surgery, and soon we were all heading in to hospital in the darkness before dawn. Gav himself was in great spirits – we had spoken a lot about post-surgical expectations and he seemed to view it all with his typical adventurous spirit.
Check-in and pre-op went smoothly – with many activities provided by Child Life and Mummy, he was too busy to worry as we dressed him in his surgery jammies. We met quickly with Dr. Dirks, Gav’s neurosurgeon, who would be onsite just in case. The consult with anaesthesia went well, I’d had some concerns that a slight cold would postpone the surgery but his lungs sounded clear. After signing the consent, I got geared up in OR duds, hair in a cap, and accompanied my beloved child to an event that every motherly instinct was telling me to carry him screaming from. Gavin skipped and sang songs on the way, in the brightest of moods. He chose watermelon scent for his gas mask and climbed up on the table with no hesitation.
Once we had him comfortable and the mask fitted on his face, he began to slowly drift off as I gently talked to him, telling him I would see him on the other side. He cuddled Minnow as he went down. The moment he was out, the anaesthesiologist said, “Thanks, mum.” My cue to leave. I was escorted out by one of the nurses and headed to the surgical waiting room to meet Craig and check in with the teal-jacketed ladies of the Women’s Auxiliary.
The surgery was booked for four hours, so we went for breakfast. I always amaze myself that when I am at my most stressed and worried, I can still chat, laugh, or eat a sausage breakfast sandwich. But I have learned how to worry when worry is necessary. There is no point in getting worked up at the beginning of this kind of surgery. The absolute majority of the time these procedures go well, and spending the whole time believing that it won’t go well is definitely not the right attitude to cultivate. So we spent some time talking, and tried to sort out where we would sleep that night.
Gavin was booked to spend the first night in the ICU after his surgery, for observation. Unfortunately, there is no place in the ICU for parents to sleep – except these secret sleeping chambers that must be reserved ahead of time. Many times I have put our names down on the list, but never in all our stays has our case been deemed acute enough to be granted access to one of these. So we have propped on couches and benches, gurneys and chairs. And had some fairly horrendous sleeps. Staying by your child’s bedside overnight in ICU is a bad idea. You become exhausted and leave yourself with no reserves to battle on the next day. Sleep must be had, although it can be hard.
In this respect, we were lucky. The plastic surgery unit was not full, and I found out Gavin had already been assigned a room. There would be a bed for one parent, but not both.
After sorting out sleeping arrangements, I went the the special place I pray during each of Gavin’s surgeries. I must, extremely superstitiously, go there each time or I feel that I have failed in some way. This task aside, I felt ready to wait out the time in the waiting room.
Craig and I were both shocked to see Gav’s surgeon walk in the room at 10:30, when we’d thought the surgery would take at least 3 or 4 hours. I love surgeons who tell you what happened as they walk up, instead of ushering you into another room to chat. Dr. Phillips is a kind, incredibly reassuring character whom Gavin thinks looks like Kenneth Branagh, aka Gilderoy Lockhart from Harry Potter 2. He quickly told us that the surgery had been very easy, the PEEK implant had fit perfectly in place and they had also repaired with titanium mesh another area of his skull. He had called in Dr. Dirks to look at one area of concern, but he felt that everything was okay, so they quickly finished up and escorted Gav to the ICU.
As we waited to be taken to the ICU, I unexpectedly burst into tears. For like, 20 seconds. And then pulled myself together and ate a Kit Kat. Relief and sadness are close cousins. Finally, we realized that no one was coming to get us and we’d better just found out where they’d put our son. In ICU you must ring from an outside desk for permission to come in. All of that was hauntingly familiar. And it felt hard to walk down those halls that I cried and prayed in so hard 3 1/2 years ago.
We found Gavin in a shared room, already quite awake and apparently telling the nurse, Isaac, about how he’d watched the Olympic gold medal hockey game! He was fairly sleepy but coherent. After each procedure, I examine him carefully to see what’s been done and what other stuff happened to him in the OR. Often there are little things that no one ever explains to you, unexpected scratches or band-aids. And you are left wondering how your kiddo got that little injury. Gavin’s eyelids were (and are) quite bruised from the procedure, which I assume is from being positioned uncomfortably on his face. He had an IV in each hand and a band-aid from a separate poke in each hand as well. His face and ears were slightly bloody, and he was propped on his side so as not to put pressure on his sutures. They had to open the original incision site, so it is quite a large, horseshoe incision on the back of his head. His nose was bleeding from where he was intubated. And unfortunately, he also had a drain next the the site, which is a tube under the skin which pulls excess fluid out of the area.
Our first day in the ICU went quickly. There is always a lot of care to do – cleaning, mouth swabbing, positioning, etc. Gavin is very sensitive about IVs and wasn’t thrilled to have two. Almost immediately, he wanted to play games, so we helped him hold the iPad and play checkers. He didn’t feel able to grasp a marker, so instead dictated what colours Mum and Dad should use in his colouring book. He was on a continuous morphine infusion for the day, which made him quite cranky, but finally in the afternoon, he was given permission to drink and eat. He inhaled a bagel, and then asked for another and ate most of that too. The day is a blur, and we finally tucked him in for sleep at 9:00. His nurse that night was from the plastics unit and would bring him upstairs first thing in the morning if all went well.
It did go well, and he was wheeled up by transport before 8:00. I slept at the hospital alone. It felt very odd to be in the room without my Bean with me. Yesterday, I’d hoped that Gav would feel better than he did, but he found the drain in his head very constricting and wasn’t happy to move around too much. So he stayed in bed yesterday and was demanding. He was very cross with mummy and daddy, but I told him he was allowed to be as mad at us as he wanted, and let him do whatever he liked. He was somewhat cheered by the new game and Lego set I’d bought him. Opening presents always lifts my spirits. But then he immediately wondered why there weren’t more prezzies. Ha. He didn’t eat much during the day and had an epic nap in the afternoon.
Of course this meant that he didn’t go to sleep until after 10:30. I was knackered and kept drifting off, only to be awoken by this little voice saying, Mummy, are you there? I can’t go to sleep. I’m trying and trying but I just can’t. So I would get up and read a few more pages of Harry Potter and convince him to try again.
This morning found him much more chipper, and Dr. Phillips was pleased with him and asked for the drain to be removed. We did that around 10:30 this morning, and trust me, that wasn’t exactly a pleasant procedure. Once it was done, though, Gav finally felt well enough to get up, have a quick bathe and get dressed. He spent the rest of the day doing Lego, playing games, and exploring the play-room. The Child Life specialist brought some visiting volunteers from Home Depot to our room and they helped Gavin build a boat, and gave him an orange apron that he was pretty pleased with. His energy seemed boundless – and I was exhausted, so at one point I begged him to just sit still on the bed and watch telly while I napped next to him. Being the good son that he is, he quietly watched Spongebob whilst I snoozed.
None of this really gets easier. At least now I’m used to it. I know how to break hospital days into half-hourly blocks of activity. I know how to exercise patience, because it is mandatory. I know that my kid can seem really, really bad one day, and I will wonder how long it will take him to get better. And the next moment he will be so astoundingly better that I’m in awe of his resilience.
This has got very long-winded. Bed is calling – we are probably leaving tomorrow. Many thanks again (if you read this far) for the support, prayer, positive thoughts and kindness. We are surrounded by love.