Saturday, July 25, 2015

porter spinal surgery

This is going to be a hard one. No way around it. This experience was difficult to live through and still gives me a pit in my stomach when I think back on it. At the same time, there were some beautiful moments and I suppose some positives that came from it all. 

Basically, Porter woke up late at night on December 4th 2013--just as Kevin and I were falling asleep. He came into our room screaming in pain and kind of grabbing around his upper back/shoulders. We weren't sure what was going on, but kinda thought he was maybe experiencing some growing pains and was perhaps just a bit disoriented from sleep. We calmed him down and got him back in bed with some ibuprofen. 

Within minutes he was calling out. We headed to his room and again tried to calm him down and get him comfortable. He seemed somewhat relaxed so we were about to leave his room when he mentioned that his legs felt numb. Kevin and I looked at each other and knew immediately that we needed to get him to the hospital. Something was obviously not right. I called my mom to head over, and without even putting shoes or socks or warm clothing on the poor kid (he had been sleeping in shorts and a t-shirt) we grabbed a couple of blankets and Kevin picked him up and carried him to the car. Off we headed to the local hospital--fortunately just a few minutes away. 

It would take pages and pages to go into a lot of detail, but basically everyone at the hospital was great in moving quickly and recognizing that something very serious was going on. They gave Porter medicine for the pain right away and did some quick diagnosis at which point we realized the "paralysis" had moved up as far as his chest. Before we knew it, he was headed in for an MRI.

The MRI felt like it took forever (and in actuality I do think it ended up being a couple of hours). We tried to sleep on a bench outside the room. The hospital (at least where we were) was pretty much silent, but I was so nervous about what was going on that it was almost impossible to rest. Everything felt surreal and hazy so I really don't even remember that part with complete clarity. When it was finally finished, we discovered that Porter had spontaneous spinal epidural hematoma (SSEH)--in basic terms, a blood clot along the spinal cord which was causing the spinal cord to compress. An uncommon issue, particularly in pediatric patients. They also noticed a slight compression fracture in a couple of the vertebrae (T3 and T4 if I'm remembering right) that I believe they felt was also caused by the clotting/spinal compression.

I have to skip back at this point, and mention that six days prior, Porter was playing in a ward turkey bowl (Thanksgiving morning fun) and got hit pretty hard in a collision. He complained of back pain at that time, sat out the rest of the game, and experienced some pain for the remainder of the day. We decided he should skip that weekend's wrestling tournament, but by the following Monday he seemed fine (mentioned a small amount of pain but nothing that was keeping him from his normal activities) so I sent him off to wrestling practice, and then on Wednesday evening he attended b-ball practice. It was late that Wednesday night when everything occurred. Our immediate thought was that this must have been caused by the injury. However, Porter's surgeon felt quite certain that the hit was not the cause of the SSEH (in fact could not have caused the hematoma).  He also believed that the time between the hit and symptoms would not make sense for the two to be related. It still seems somewhat too coincidental to me but there doesn't seem to be any literature that links SSEH to trauma, so it's very difficult to say.

Anyway, long story short, Kevin was able to give Porter a priesthood blessing and then we were soon loaded up in an ambulance and headed for Harborview Medical Center in downtown Seattle, where we knew it was likely he would be undergoing surgery. As soon as we arrived, there were more white-coated doctors, residents, and specialists awaiting us than I can now recall. Since the condition was so uncommon and covered such a range of areas, all were represented (orthopedics, neurology, pediatrics, etc.). It was reassuring to know that he would be cared for so attentively, yet terrifying to realize that whatever was going on with him could cause such a stir.

This type of scene is most of what I remember from those early moments at Harborview. 

In no time at all, Porter was headed into surgery, and Kevin and I were left shell-shocked and waiting. If I remember right, surgery took less time than expected, although still a few hours. Before too long we were at his side in the recovery room. 

As soon as he was awake, it was obvious (albeit just slightly at the time) that the situation had improved. He was soon moved from recovery into the ICU were he could see some welcomed visitors (the grandmas and Aunt Heidi).

We were all happy to see a bit of movement in his toes and legs!

Hard to see their brother like this, but these guys wanted to lend their support as well.

From here it was just sort of a waiting game. Waiting to see how how the next "poke" test would go (the doctors would come in periodically and proceed to poke Porter up and down his legs, chest, and back with different objects--primarily the tip of a safety pin--to gauge any increased sensation). Waiting for the results of a secondary MRI. Waiting as we made the difficult decision of whether or not to have an angiogram performed in order to check for any vascular malformation (i.e., something amiss in his blood vessels). 

Our view as we waited.

Porter's favorite past-time while waiting;).

Some of the time he waited in relative comfort, other times not so much. Luckily he had wonderful nurses in the ICU who took excellent care of him!

When it came down to it, we decided against the angiogram. There is some risk involved, particularly considering the smaller size of a child's blood vessels, and the procedure exposes the patient to radiation (not tons, but enough to slightly increase the risk of cancer in future years). I had the opportunity for a pleasantly candid conversation with the radiologist, and ended up deciding on another MRI (which is less invasive). We would use the angiogram only if there were any signs up malformation. At that point we moved out of the ICU to continue Porter's recovery.

He enjoyed being able to see more family and appreciated all of the extremely thoughtful sentiments from family, friends, and acquaintances. 

Giant card from some classmates. 

Fun balloons to brighten the old, cramped hospital room.

From here (and this was just a couple of days after surgery), Porter began to recover very quickly.  With the help of a walker, a special belt, a great physical therapist, and decent dose of morphine, he was assisted out of bed and was able to walk several steps. He was very lightheaded so couldn't go too long, but we were very excited about this milestone. He was still experiencing a fair amount of pain (hence needing the morphine to do much movement), but was otherwise doing quite well. 

So nice to see him up and moving!

Just five days after surgery, we were informed that Porter would be moved to Seattle Children's Hospital (an amazing place!!) for some additional rehab. They quickly had him working on occupational and physical therapy.

Glimpse of his rehab schedule. 

He was not actually using his legs a whole lot at first, but it was quickly apparent that he was regaining what seemed like full strength in both of them. A miracle really as far as I'm concerned! 

In just a couple of days, we observed overall improvement in every possible way. 

We were humbled by very thoughtful and generous gifts. 

We met some great people, like Porter's 2nd roommate AJ, who had been at the hospital for quite some time with a heart issue, and would finally get to go home the same day as Porter (notice P is holding a cute little bear from AJ that he immediately decided would be AJ Jr.). 

Oh, and I can't forget to mention that we enjoyed our evening Starbucks excursions (to the bottom floor of the hospital) for mint hot chocolate and cake pops. 

After about 10 days (5 in Harborview and 5 more at Children's) it was time to get home!! I, in fact, was probably a little too anxious, and hurried us out of there--in order to miss traffic--right before the entire Seahawks team was going to visit. Yikes! Sorry Porter. 

He did still get to put his handprint on the welcome poster;). I know, not much of a consolation.

I really don't know what else to say. There were some challenges when we got home. Porter was definitely weak from sitting around in a hospital bed and his incision was still in the process of healing. Outpatient physical therapy visits were a part of our weekly routine and there were definitely some difficulties associated with getting back into school and finishing out the year in good spirits and with decent grades.

There are still challenges. Some things about him--aside from the obvious scar--may never be quite the same again. One very minor example is that last week, when I was touching his back and encouraging him to stand up straight (he seems more at risk for kyphosis now), he mentioned that most of his back continues to be reasonably numb.

Despite the challenges, though, I am immensely grateful.

We had an amazing medical staff and a fantastic surgeon (Dr. Richard Bransford)--what a blessing to live so close to the type of medical care Porter urgently required! We received an overwhelming outreach of prayers and support from, it seemed, every friend and acquaintance with whom we had any type of connection. And of course, we really couldn't have asked for a better outcome to the entire ordeal. I almost felt guilty in fact, leaving Children's with such a whole and healthy child, when there were so many so much worse off than him who would not be enjoying the same outcome, at least not in the immediate future.

While I for one would prefer to never experience something like this again, I hope I can always be appreciative of the unforgettable moments of connection and growth, as well as the immeasurable lessons learned.