The Surgery And Its Aftermath

*as usual, because I haven't posted very often, this is going to be a long post.  Grab a coffee or a beer, take a break and read away...

When we found out about Joel's surgery, I began prepping myself for what the week-long hospital stay would require...finding accommodations, figuring out our hospital shifts so that someone was always by Joel's side, packing lists etc.  What I didn't prepare for was what would happen when we returned home.  This past month has been the most stressful month of our lives.

Allow me to start from the beginning...

We were told last year that Joel would need back surgery to correct his scoliosis.  His surgeon said it would be sometime in November.  As the months passed, we started making plans for "sometime in November".  Then we received a call saying it wouldn't be until December.  Finally, they phoned and said they had a surgery opening - on December 21st.  Eff that.  We were not about to spend Christmas in hospital.  The surgeon said the next opening was at the end of January.  Again, we started building ourselves up mentally for what was to come.  January came and went without a surgery appointment.

I began to, more or less, harass the surgeon's receptionist on a weekly basis.  We were tired of being strung along and needed to know when this was going to happen.  "Now it will likely be the end of February" is what we were told.  When it didn't happen in February, I phoned at the beginning of March and asked what was happening.  The receptionist said that the second surgeon was in the process of moving his family from Calgary to Saskatoon and no surgeries were booked for March.  What. The. Effity. Eff.  We were already stressed by that point.

FINALLY at the end of the first week of April, the surgeon's office phoned to say surgery was booked...and it was in two weeks.  We had two weeks to figure out where we were staying, who was watching the kids during the day of surgery (I wasn't about to chase Miss K around the hospital for 10 hours) and so on and so on.  We ended up staying at Mike's sister and brother-in-law's place, along with Mike's mom.  With regards to accommodations, things couldn't have worked out better.

On the morning of the surgery, we were at RUH by 6:30am.  There were some pre-op things that needed to be done, including marking up Joel for where the incisions would be.  Poor kid was covered in blue marker from nape to ass.

Moments before we headed down to the OR holding room.

I had already taken my Ativan and thought that I would be okay as Joel headed in to the OR.  Mike was going to go in with Joel until he fell asleep.  I was doing okay until the surgical team walked up to us.  There were close to a dozen people and the magnitude of what was about to happen hit me and I burst into tears.  Joel was scared enough as it was and I didn't want him to see me crying, so I buried my face in Mike's shoulder.  Obviously, I didn't do a very good job of hiding my tears because before Joel fell asleep, he told Mike to tell me that everything was going to be okay.  What a kid.

The next ten hours were mostly spent in the OR waiting room.  We were told that one of the nurses would come out every two hours to update us on Joel's progress.  We took turns going out for smokes or going to the bathroom, making sure one of us was always in the waiting room.  There was a brief half hour in the afternoon where both of us were gone, but the nurse had taken our cell numbers, just in case.  I headed upstairs to get something to eat and Mike headed out to the van to stretch out and nap.  I was able to nap in the waiting room chairs.  The only reason I slept was because my iPhone was dead and I was waiting for it to charge.

We had started the day with several other families who had loved ones getting surgery.  We watched every single one of them get the call that their family member was in recovery and eventually leave.  By 4:30, we were the only ones left in the room.  Finally, we got our call that Joel was in recovery and we could see him shortly.  They prepared us that Joel's face was quite swollen because he had been laying face down for so long.  They also said he had lost quite a bit of blood and had needed a transfusion (four pints in total).  I convinced Mike to finally take an Ativan and he was thankful he did.  Seeing your baby (even if he's 17) in that state is beyond tough.  Joel was moaning and weeping and confused and wanting to talk.  Mike and I stood by his side, held his hand and tried to convince him everything was going to be okay.

Joel was moved up to the surgical trauma ward in a room with five other patients.  There was a nurses' desk right in the room, so Joel was under constant watch.  He had one epidural in his shoulders and one in his lower back.  He was also on morphine.  Even with that, Joel moaned and groaned his way through the first night (I would have too).

I was worried about how the hospital rotation was going to play out and how the kids were going to adjust to being in a different house and having different people taking care of them.  The rotation ended up basically being Mike and his mom.  If one was at the hospital, the other was at home sleeping.  Mike did all of the night shifts.  My job was to take care of the kids.  I initially questioned why I was there and that I could be doing this at our house, but when Mike said he needed me there, even if it was to only see us for ten minutes before he climbed into bed, I didn't question it any further.  For Mike, knowing that I was right there if he needed me was huge for him.

Joel's physio started the day after surgery.  They had him up and in a modified chair.  It blows my mind that that happened so quickly. I guess with all the meds he was on, he didn't feel that much.

His incision is from nape to butt.

What the poor kid did feel was the urethra infection he ended up getting.  When they put the catheter, it must have scratched something inside, because there ended up being blood in the line.  They ended up pulling the line and starting him on antibiotics.  Even with that, watching the poor guy try to pee was beyond heartbreaking...he was in the most pain I have ever seen him in. More about that in a minute...

In addition to dealing with the surgery, I had to be back in PA four days post-surgery to do a tenant transfer for my parents (who were on holidays).  One of their tenants was moving out so I had to do the walk-through with them, wait for the new guy to show up and go through all that paper work.  I was anxious over how I was going to juggle both kids while doing the walk-through, but ended up leaving Bubbaloo with Mike (who was supposed to be sleeping). Miss K and I whipped back to PA, did the fastest tenant transfer in history and flew back to Stoon.  Miss K tuckered out on the drive back and I felt horrible that this was how she spent most of the drive...

So, on that Tuesday I had been up early with the kids, did the trip back to PA and then cared for the kids the rest of the day.  As I was getting ready for bed, Mike texted from the hospital saying he needed me there.  It was midnight and Bubbaloo was up for a feed.  I had to wake Mike's mom to finish the feed and put him to bed.  I zipped to the hospital and up to Joel's room.  He was in an incredible amount of pain from trying to pee.  He was pushing so hard he would end up puking.  Mike needed me there as comic relief for Joel, to try and take his mind off the pain.  I love to tell Joel the most fantastical stories that involve his friends or celebrities dying horrific, comical deaths and the stories are filled with more swears than any human ears should ever have to hear.  Joel loves them :) I am very dead pan and matter-of-fact when I tell them and that just makes Joel laugh even more.  I stayed at the hospital until close to 5:00am, when Joel finally peed and was able to fall asleep.  This is what someone who's just done a 22 hour day looks like...

In the hospital elevator, beyond ready to go home and climb into bed.

The next morning, I was shocked when Mike texted to say they were releasing Joel from hospital.  After watching how much pain he had been in the night before, I couldn't believe they were releasing him into our care.  It took the whole day for arrangements to be made...faxing prescriptions to our pharmacy, modifying Joel's wheelchair, bathing him and so on.  We didn't hit the highway until close to 5:00pm.  We had travelled down in two vehicles, knowing the transfer home would require Joel being stretched out in the front seat of the van, leaving no room for car seats.

Like I said, I had prepared myself for that week long surgery.  Not the after-care part.  This past month has been the most stressful month of our lives.  Joel was 77lbs going in to surgery and he lost close to 15lbs in hospital.  This meant that we needed to pump as much food into him as possible.  This meant that child care priorities shifted within the house.  Joel now came first.  Try explaining that to a nine-month old.  Or a three-year old.  

Joel's diaper changes now require two of us.  Throw in my OCD and fear of his bodily fluids and you have a gong show during every diaper change.  A nurse friend of mine scooped some doctor gowns for me to wear so that I didn't have to completely change my clothes after each diaper change.  The meds have caused Joel to have extra BMs in a day so we are in there five times a day, 15-20 minutes at a time.  During those changes, Joel howls and shrieks his way through them.  Stressor #1.  Bubbaloo falls over or drops his soother.  I need to de-gown and do a surgeon scrub before I can help him and then return and re-gown. Stressor #2.  Miss K realizes we're occupied and decides to empty all the shampoo bottles into the tub.  Another de-gown, scrub, get her occupied with something else and re-gown. Stressor #3.   I am damn near in tears by the end of each change.

Because of Joel's weight loss and throwing up, he needs to eat/drink tiny amounts as often as possible.  This adds extra time to his care each day.  The boy was skinny to start with.  Now? He honestly looks like a concentration camp survivor.  There is literally (and I'm using that properly here) a four inch gap between his upper thighs.  This is a shot of my fingers wrapped around his shin...I can barely do that with Bubbloo's shins...

My fingers wrapped around his wrist...there is a gap left over.  

Besides the diaper changes and extra feedings, there's all the meds (on top of his regular anti-seizure meds) that have to be given...pain meds, meds to stop the shaking caused by the pain meds, the anti-biotics (those are done now).  And then there was the wound care as well.  Most diaper changes required his bandage to be changed as well (which required cleaning the wound as well).  After all of this, I feel like I'm halfway to getting my nursing degree.

Maybe this doesn't sound that bad to most people.  My parents were here one evening as we were giving Joel a sponge bath and they were privy to his shrieks and howls.  It gave them a small glimpse into what we've had to deal with.  After seeing that, my parents were kind enough to take both kids for this weekend.  And Joel has gone out to his mom's house for two nights so we are kid-free for two whole nights.  

We really needed this time to ourselves because Mike has knee surgery next week and the stress level in this house is about to reach astronomical levels.  I'm not kidding when I say please pray for us...we need all the help we can get.