The beautiful, fun, happy night of sledding ended and within a few hours a horrible experience began. In the early morning hours that night, Kanyon woke up with intense symptoms of another shunt malfunction. He was in a lot of pain and vomiting and this time it all came on sooo fast, unlike in November when it seemed to take a couple of weeks for his symptoms to escalate. As I walked out the door to the ER, I told Kory, "I'm just up for this. I just did this. I am NOT ready to do it all again." Little did I know we would all do so much more than we did in November. We got to the ER and had a little hiccup with the imaging and the Dr's in Seattle being able to see our images. Thankfully the Dr. on call there was one that we had worked closely with in November and he said "If his parents think something is wrong send him. We trust them." It felt good to be remembered and that they trusted us to know something was up. We didn't really want to sit around and wait for the kinks to get worked out. We were transported pretty quickly and this time the flight was in a larger, faster plane on a bright sunny day. They gave Kanyon some pain medicine so he slept pretty comfortably for the 2.5-3 hour flight. Since things went so smoothly last time with the shunt revision surgery, our plan was for Kory to stay put with the other 2 kids and I would go with Kan and we'd be back in a few days. No need to uproot everyone.
Here we are loading up and heading out. Monday, January 16.
By the time we got to the ER in Seattle Kanyon was still sedated from the medicine but he was obviously in a lot of pain. I was uncomfortable with how he was feeling and VERY ready for this to get taken care of. The Dr. we'd seen before and really liked came by and tapped the shunt. They do that to test the CSF fluid as well as relieve some of the pressure. This helped ease his pain until we could get to the OR. He got in for surgery and things went smoothly. His wake up was calmer than last time which I was thankful for. He pretty much woke up enough to talk and then went back to sleep for the night. I was glad to have a little rest. I went to bed around 2am fully expecting things to progress like they did the last time. I thought we'd wake up the next morning feeling pretty good.
Weeeeeeell that didn't exactly happen. When Kanyon woke up, he seemed Ok but he couldn't see. It was hard for him to explain what he was seeing, but he just kept saying "Its messed up! I can't see!" He was upset by this and NOT calm about it. They carted us across the hospital to see the Ophthalmologist. We spent almost 4 hours over there looking at every part of Kanyon's eyes possible. The good news was they didn't find anything really wrong. There was no swelling on his optic nerves, there was no sign of any damage anywhere. So we were basically just watching and waiting for things to either get worse or just improve on their own. Thankfully, the eye thing slowly resolved. Here we are crashed in the Eye Dr. office. LOOOOONG day. Once everything checked out Ok, we were thinking we were over the hump and headed to a recovery. We had a ski trip to join later that week!
The eye thing improved, but other things started. He started complaining of abdominal pain. At first we just figured it was his gut having a hard time after the anestheisa on top of his already complicated digestive/bowel issues, it made sense that he could be having pain related to constipation. So we slammed his little body with everything we could to get his gut moving and empty. Over the next 12-24 hours we were pretty successful getting his bowels moving so that his pain would lessen. All this time I'm a little discouraged that he's recovering slower, but I still thought as soon as he pooped we'd be well on our way and over that bump and NOW we'd be headed home. So I kept telling Kory to stay put because I think we're about to be over all this. Poor Kanyon kept having trouble and it got so bad it hurt to talk or stand up or move. It was so sad and so discouraging. We had our Neurosurgery team of course and they brought in General Surgery to look at things like his appendix, bowl perforations, etc. when he wasn't better after he pooped several times. We did tons of imaging that didn't really come up with any answers as to what was going on. It was a BUSY couple of days in our room. There was no rest for the weary and no stone was left un turned. On Thursday afternoon January 19, I went to sit Kanyon up and he felt warm. I told the nurse to take his temperature and when she did it was pretty high. I think around 103-104. That was the first time he'd had any symptoms other than the abdominal pain. Our good ol' Dr. that had been with us through all of this, Dr. Buckley, came in and said, "I think we should tap the shunt and just rule out a shunt infection. I think its unlikely that thats what it is, but lets just rule it out and move on from there." So within a few minutes, he was back in our room to tap the shunt. I was sitting on the bed helping hold Kanyon (not because it was going to hurt, just to keep him in the right position). When he tapped the shunt, I could immediately see that the CSF fluid was discolored (I had seen the fluid from other taps I'd seen him do). My stomach dropped. When he finished he started explaining the process of sending it off to the lab for them to run a culture and if it was negative what our next step would be and if it was positive, he started explain the process of all the things they do to deal with the infection. I was seriously weak in the knees and I just said, "Do you think that's what we're about to do?" and he pretty much said yes. I was SICK. Remember how I told Kory "I'm not up for this" as I was packing my bag for what I thought would be a 3 day ordeal? HA! This all just changed everything. I called Kory and updated him and said he might as well start thinking about getting here because it was at least a 2 week process to treat the infection. So that night, Dr. Buckley and Dr. Lee took Kanyon back to the OR and externalized his shunt. Meaning they fully removed the shunt that was infected and they put in a temporary drain like thing to do the work of the shunt. They want to leave the shunt space completely empty until the infection is cleared. They also started him on several powerful antibiotics that they would narrow down once they got information about the exact bacteria that was found in the culture.
This External Ventricular Drain that he had in his head is basically a tube they placed in his ventricles that would drain the fluid that his shunt would normally drain. It was a gravity based thing so he had to stay level with a certain line on the IV pole. The CSF fluid drained into a bag and they emptied it every few hours. CRAZY. Any time he changed his level in position....laying to sitting, sitting to slouching, sitting to laying, etc. we had clamp the drain off, move this thing on the pole even with his head/ear and use the laser to make sure he was level, then unclamp the drain so that it could start draining again. It was a quite the process. And I know the poor nurses got sick of me saying "We need to move" "Can you come unclamp us?" They had to do all of this for us, so it was pretty consuming for everyone.
Meanwhile, Q and J are with Tye and Rachael (and Jona of course) and Gram and Chief. Pictures like this were good for me to see. Its always good to be with cousins.
Here he is after his surgery that night. The surgery was around 10 pm. They did the surgery then when they did the follow up imaging, they saw that the drain wasn't quite placed where they wanted it to be, so they had to go BACK in and fix it. Thats #3 trip into that incision on his head. Thankfully they kept him under anestheia for the imaging because they had a hunch it wasn't quite right. So I was glad they hadn't woken him up and then have to put him back under. But I hated that he was having to go back to the OR again. It just seemed like we couldn't catch a break.
Meanwhile, there's a little girl at home getting ready for her first ski trip ever! While Kanyon was in surgery I sent Kory a list of things to pack for the kids to go on the Spencer Family Ski trip. This year the fam decided they'd come to Montana to ski at Big Sky to "make it easier on us". And we were stuck in Seattle. Major bummer. But it worked out that Q and Jaylie were going to get to go, so that helped a ton!
Another part of this story is about some dear friends. Through this whole process, I was keeping different friends and family updated via texts, etc. On Wednesday when Kanyon's tummy wasn't better, sensing the discouraging tone of things, my friend Doodle texted and said, "Me and Stefany really want to come up there and be with you. What do you think?" We talked and decided that things were about to turn the corner as soon as Kanyon pooped some more, so save your trip here for a time when you can come visit me and actually have fun. I was SURE things were about to improve. Though I was touched by their thoughtfulness, I just didn't feel like they really needed to come. Then Thursday morning Kanyon was still sick, feeling even worse and we still didn't know what was going on things were obviously not better. I got a text from Doodle sometime that afternoon that said "Me and Stefany are on our way to the airport. We'll be to Seattle by 10:00 tonight" My dear dear friends just made it happen. At first I thought they were crazy, then just a few hours later is when we discovered the shunt infection and the chain of events that were about to take place and all I could think about was how glad I was that they were on their way. When they bought their tickets we had no idea what that day held, but by the time they got there Kanyon was in the OR and they sat with me while we waited for him to get out, then waited again when he had to go back in. Finally around 2 am (which was 4 am Texas time for my normally early to bed friends) Kanyon was out of surgery and headed back to his room, so they headed to their hotel. I was so thankful they were there with me to pass the time. Kory was coming the next day but MAN were those gals just what I needed that night. They stayed through Sunday and through what ended up being some of our worst days, but somehow we managed to have a really fun time. They got us good food, went to the grocery store for me to make sure I had food to eat when they left, washed my clothes...remember I only thought I was going to be there for 3 days! Its no surprise that these 2 would do this because thats just who they are, but it sure felt good.
They were 2 of Kanyon's official "Caregivers" so they didn't have to abide by the visiting hours and such. Wohoo!
Friday afternoon, Kory got to the hospital and Kanyon seemed to be doing OK. Not great, but OK. That night I decided to go back to the hotel with Doodle and Stefany to see if I could get some actual sleep. Kory was staying with Kanyon and we all felt good about it. I had a good night's sleep and then my phone rang. Kory called and said things were tricky and he needed me there. Kanyon had thrown up "tons of green stuff" and we needed to figure out what to do next. So when I got there we talked and tried to think what could be going on. He hadn't eaten hardly anything so we thought that maybe when he tried to eat breakfast that was not good. We spent the day in much of the same way as usual. Kanyon was moderately uncomfortable but we kept being hopeful that he was about to turn the corner. Doodle and Stefany were busy getting us groceries, washing our clothes, and getting fancy with Uber to get us yummy food. At some point in the day Kanyon threw up again and seeing it with my own eyes was unbelievable. To save the details he was basically just throwing up bile from his stomach and suffice to say that you'd be surprised how much bile your body makes in just a few hours. We were worried and sad that this was happening. Making it more complicated was the whole drain thing because if he was laying down and started to throw up, we couldn't just sit him up. We had to clamp the drain first. Not cool. That evening I just felt like things were out of control and there was no end to this insanity. The General Surgeon Dr. ran some more images and bloodwork. There was also a norrovirus outbreak at the hospital at the time, so though the symptoms weren't exactly the same, any kid that was throwing was put on isolation until cultures came back negative. So add to the already complicated drain situation the fact that any time a person walks in our room they have to completely gown up, gloves, etc. What a pain. We couldn't use any common area in the hospital or any common things like the microwave or ice machine. Poor Doodle and Stefany were there Saturday evening when things got really crazy and we were all really frustrated. I was thankful to have them there, though sorry they witnessed such drama. They stayed in our room until late Saturday night and we said goodbye as their flight was leaving early the next morning. After they left, the Dr. decided to put in an NG tube. They thought that with the infection in his abdomen, his intestines were reacting to sitting in the infected abdomen by deciding to shut down. Not completely, but what they call an ileus...a major slow down/stop of the intestine. With that stopping, his bile was just collecting in his stomach until it couldn't hold anymore and so he'd vomit it out. Not a good situation. Late that night the nurses put in an NG tube and all the horror that involves. They hooked the tube up to suction and the job would be to keep the stomach empty of all of that fluid and give the intestines a chance to rest and get back to working properly. Since the infection was cleaning nicely according to blood test and CSF cultures, we hoped that maybe with a little break the intestines would get back on track. When the tube was in, the suction didn't seem to be completely working so all night long we watched seeing if it was sucking anything and calling nurses, etc. Quite frustrating. The next morning when the Dr. rounded we told her and she looked at the tube and said it was the size you'd use for a newborn. Not a kid Kanyon's size. Which meant they had to take it out and do it AGAIN! I was so frustrated. That night all of that happened we had the one and only nurse that I didn't like. I just didn't feel super confident with her and of course that was the night we ended up needing intervention. We made sure a nearby nurse was there in the morning to do the NG tube. I was glad the other nurse was there and we felt much better about her care and ability to place the tube correctly. They got the new NG tube in and it immediately worked so much better. After it was over Kanyon reached up and touched his nose and said "Awwww man. Now I look like an elephant!" Haha. Poor guy is even funny when he's miserable. Thankfully that afternoon he sat up and watched the iPad for a while and we saw a glimpse of him getting better. The NG tube seemed to be doing its job and the longer he had it in, the better he started to feel! HOORAY!
By the next morning he was asking for food for the first time in 2 weeks! We knew that was a good sign, but he couldn't eat anything as long as the NG tube was in. Now his newest complaint was being hungry and the nose tape itching. YAY!
As he perked up we thought he might like something to do while he sat in the bed. We went down to the Play room and could check out some toys. THEY HAD A MARBLE RUN!!!! Could there be a more perfect toy for him?!
The details are foggy but after 24-48 ish hours on the suction, they started to wean him off and see what would happen. They left the tube in but turned off the suction so nothing was being sucked out other than what gravity drew out. He kept progressing and they watched for their indicators (which involve more talk of bodily fluids so I'll stop) and all things seemed to be moving in the right direction. After 12 hours off suction, they took the tube out!!! I was a little nervous because I kept thinking "what if he's not ready and they have to do it again?!" But it was pretty clear the boy was ready and feeling good. We were SO thankful to see some life in him again.
Seattle Children's Hospital is a great place, but my #1 complaint is that there IS NO COKE IN THE WHOLE PLACE. Its only diet drinks or the Zero version of drinks. NOT OK. I get they're trying to be "healthy" (though I don't think Diet is healthier) but I happen to be addicted to Coca Cola and in my most stressful moments I could use an ice cold Coke! NONE. But Superheroes Doodle and Stefany stocked me up with canned cokes before they left. Ahhhhhhhhhh. One day I went in to the family room fridge and saw that like 3 of my cokes were gone. It was a six pack. Then I went back about an hour later and they were ALL GONE. The plastic rings that the cokes are on along with MY NAME TAG LABLE IDENTIFYING THE OWNER sat empty and naked in the fridge. Really people? REALLY???!!
I was eventually able to move past the Coke incident but I think I'm still not totally over it.
On to better news......
Kory gave him his first bites of food after the tube was out. It was a good morning!
While in the playroom looking at toys, we just happened to grab the game Snakes and Ladders and it trumped the Marble Run! He loved it! We played game after game after game and I was able to send pictures to family of a SMILING boy playing his game. Everyone everywhere was breathing a sigh of relief. FINALLY we seemed to be turning that corner we'd been trying to turn.
Another day another game (or 50).
If you wanna see the hardware in his head, this picture shows it. If you don't wanna see it, close your eyes and scroll down. The u shaped incision is where they put in and removed the shunt. they closed it up with dissolvable stitches but would go back to that site later to put the new shunt in. The orange circle with the tube coming out of the middle of his head is the External Ventricular Drain. Lots of gnarly wounds for the boy. That incision where the shunt came in and out was accessed 4 times in the span of 3 weeks we were there. Sheesh.
One day I got a text from my cousin Spencer, who lives in California, and he wanted to come visit Kanyon. I said, "Are you sure? How close is it?!" His answer: "Closer than anyone else." So my dear cousin hopped a plane and spent a couple of days in Seattle taking his turn playing snakes and ladders with Kanyon! It was a fun visit and I'm so thankful he was willing to spend money and precious time to come give us a little boost!
We were back to playing with my hair all day long too. Another good sign. I think Sunday-ish Kory flew out. The other 2 kids were getting back from their ski trip and we were feeling good about where Kanyon was headed. So it was back to me and my hospital pal, but we were in a much better place. Poor Kanyon was sad to see his Daddy leave. He was feeling good enough that he was begging to leave with Kory. He kept saying "But I feel better! why can't I go?" Poor kid. Pretty high on the list of thankful is the Cokes Kory made sure to buy me before he left WHICH I KEPT HIDDEN IN MY ROOM! I put a few in a paper sack in the fridge but only a couple at a time in case the robbers decided to strike again. But they were safe in the paper sack where no one dared look.
One afternoon the clowns came by. It was awkward.
The games continue and so does the smiling!!
At this point, we were just waiting until we could have the EVD removed and a new shunt placed. You have to have a negative CSF culture for 14 days before they will do the operation for the new shunt. Thankfully he responded very well to the antibiotics and he never had another positive culture after the one they took the night of the surgery.
Meanwhile back at home, Kory sends me this picture saying he never thought his feed pick up would look like this. Ha!
Kory sent pretty skies to me too. I was only seeing hospital parking lots.
My parents had been on the ski trip with the whole family because I forced them to stay there and not miss the ski trip. As soon as they got back from that trip, they headed to Seattle to come see us!
They came bearing gifts and the room was filled with excitement all around!! Kanyon was feeling good, I was glad to see my parents, Kan was glad to see Paw Paw and Gay Gay, and they brought him PJ Mask toys so he was pumped about that too!! yay! Dad drove all over Seattle to get us Chick Fil A and my heart leaped with joy! It was a fun few days having them there.
On Thursday Feb 2, we had the surgery to remove the drain and put a new shunt in. This surgery was relatively quick and we expected to have the full day for him to wake up and recover. They did the surgery and then as is routine for them there, they do a shunt series of X-rays to check the placement. When they checked the placement it showed that he tube that drains out of the shunt was bent. They hadn't known it was that way because in the OR when they tested to see if the shunt was draining, all was well. The Doctors (whom I have gotten to know quite well at this point) came in looking pretty disheartened. I think everyone felt pretty beat down. They were having to come in with MORE bad news and we were having to go through something ELSE. They left the decision up to me as to what to do. We could leave it and hope it didn't cause any trouble or the OR was open right then and they could go back in and fix it. The decision was clear to all of us. No Doctor or any of us felt good leaving that place without making 100% sure we were allllll good. So about the time he started stirring from his first surgery, the poor guy headed back down for another one. This one went well too and the Dr. came out to talk to us. For the FIRST time in my Kanyon's Mom career, the Dr. was crying. She said "He did great and its over. I'm glad we went back in because I think the tube would've ended up causing trouble." There was some tissue there that was in the way of the tube causing it to bend to reroute down to his abdomen. All they had to do was cut way the tissue and the tube was nice and straight. She got teary eyed saying she just hated seeing him and all of us have to go through so much the last few weeks. I appreciated her compassion and tenderness towards the reality of what had been going on in our lives. So often times their work is just their work but this group of Doctors was incredibly compassionate and HUMAN. They always recognized the situation from Kanyon's perspective and from our perspective as his family. One of them even offered to "beat down" whoever took my cokes! haha!
This was Thursday night after the last surgery and he was starting to wake up and drink a little. What a gauntlet he'd been through. This is also a nice update as to just how gray my hair actually is.
After the EVD was out we had a little more freedom to move so we spent our time walking through the hospital taking elevator rides! When Kanyon was in the middle of all of this and feeling so horrible things were SO BUSY in the hospital. There were people in and out of our room all the time, we were waiting for someone to take us to do imaging, etc. It was non stop. Now that he was feeling better, it was fun having Mom and Dad there to help us pass the time and have a little fun our last few days there.
Of course Kanyon wanted to push the elevator buttons but I was a little worried about that because....well...remember I mentioned there was a norrovirus outbreak? I wanted NOTHING to do with that so we were taking all precautions. It just didn't seem right to let him touch a button that everyone in the hospital touched. After our first elevator tour, klp was pretty upset about not getting to touch the buttons. As the mom, I was thinking "get over it kiddo" but as the Grandpa, my dad decided to solve the problem. So he got a napkin and drew a square on it so that he could hold it over the elevator button and Kanyon could push the button and the napkin was there to protect him from germs. Paw Paw genius.
The rabbit elevators were his favorite (in November the Bear elevator was his favorite), so here they are inside the Rabbit elevator. It had colored lights and it talked when you got to a new floor. Kanyon could mimic the voice of the elevator perfectly! There was a Starbucks at the bottom of the Rabbit elevators so we could go get mom's afternoon hot chocolate on our tour.
This smile never looked so good!
Meanwhile back at home, there was big news for Quinn. At our high school basketball games they do "Pop Shot" at half time. You pay $1 and you get a shot (freethrow if you're a little kid, half court if you're a big kid) to try to win a "pop". Quinn tried every game but never quite made it. Until, of course, his mother wasn't there to see it. But YAY! He made his shot and picked this delicious off brand grape drink. Lovely. He told me he'd save me enough for ONE cup but thats it.
We did lots of this during those 3 weeks. Snuggling and hair twirling. ....We were definitely on the road to recovery. By this point he was saying "I wanna sleep in my own bed!" and begging to go home.
Sunday morning my parents flew out. We were SO close to having a flight home that would've put us leaving at the same time so we could've done the airport thing together but we couldn't make it work. They headed out that morning and we all felt positive and ready to be home. You can be 35 and your parents still have the power to make everything better. And of course as the grandkid, there's no better people to nurse you back to health than your grandparents. The best thing is we had fun! Even trapped in the hospital we had a great time together-- we made fun of Dad falling asleep in the chair, waved out the window at night, rotated playing chutes and ladders, made snack trips downstairs, cruised the elevators, it was a good time. I know they were worried about us and feeling so far away but they did exactly what I told them to do because I felt so good knowing they were on the ski trip with everyone else and helping with my other 2. Its a whole THING when the medical drama hits and all the moving parts get knocked out of whack. I was so glad our stay ended with Mom and Dad there with us.
We were finally ready to head out of the hospital that Super Bowl Sunday. The hospital got us to the airport and then more drama started (Besides the crazy Super Bowl game!). Our plane was delayed, then it started snowing a lot in Seattle and apparently that doesn't happen much. They got all backed up and then had to de-ice everything. Kory left home to drive to the airport in Great Falls and was sitting there when we were supposed to land and we hadn't even boarded our flight yet. Kanyon couldn't walk AT ALL so we were using wheel chairs, but then loading on an outdoor gate so I was trying to carry him and all our junk in the pouring down snow. It was quite an ordeal. The airlines were helpful but its just sort of a tricky situation. Then we finally got on the plane and sat there for almost 2 hours waiting our turn to be de-iced. We got to Great Falls at 1:30 am. We were SO HAPPY to see Kory. We made the 2 hour drive home and we finally went to bed IN OUR OWN BEDS! Yaaay!
We woke up TOGETHER and that was the best feeling for everyone. Being away from these 2 was brutal. Being back under one roof put all the pieces back together.
It has been several years since we've had medical drama and I hope its a LOOOOOONG time before we do again. At some level, this will always be a part of our life but we'd like to keep it low drama. We can't say enough how wonderful our families are and all of our friends who took such good care of everything for us. We got home and our small group had meals coming to us for 2 weeks! AMAZING! Both of our families carried the load of our other 2 kids and they had a blast with grandparents, aunts and uncles the whole time. Writing this blog a couple of months later is an interesting perspective. Its all more horrifying now than it was at the time. When something like that is happening you just deal with it. Decisions have to be made, things have to get done, solutions have to be found, Doctors come in the room, so you wake up and talk to them, you just roll with it because you're sort of caught up in this giant fast moving machine. For me there isn't much reflection or energy spent deciding how I really FEEL about things. Obviously its horrible but I think at the time I don't even fully grasp how horrible this is for Kanyon. I'm sort of in solution mode. We have to figure out each thing as it comes and we have no choice but to deal with it even if it is the thing we were praying it wasn't. Even if the thought of going through it seems to hard, you don't really get a choice. Its horrible to think back at how much pain Kanyon was in and how miserable he was for so long. His body was going ballistic and he just had to sit there and take it. It absolutely breaks my heart.
In the midst of all of this we felt such love from our people. Friends all over the place, our families, our church family and our former church family in Texas. Everyone was surrounding us as they always do and each loving us in their own ways. Its a gift to receive each different person's version of love and care. Its a picture of Christ and what he wants for his people. We are, no doubt, better people for it.
Considering our stay in November was brief and uneventful, we just got a snapshot of the hospital and the Dr's and nurses. We had a good experience but since it was so brief, that was about all we had to say. This time was different. It seemed like EVERYTHING went wrong and poor Kanyon never once took the easy way through it. The doctors and nurses that were with us were wonderful. At one point we had 3 different teams of doctors: Neurosurgery, General Surgery, and Infectious Disease. Each team was made up of several doctors and at least 3-4 Nurse Practitioners plus all the med students that were along for the ride. Lots of people were involved all coming by our room several times a day. NEVER once did we feel like a doctor was in a rush, annoyed with our questions, not paying attention to what we were saying, or not considering all aspects of Kanyon's care. They were all patient, attentive, informative, and kind. All of our nurses (except for maybe that one) were confident and competent and dealt with Kanyon and our whole family with compassion and confidence. I feel such gratitude to them and know that it was God's provision being so well taken care of through such a hard time.
Its been a little over 3 months since we got back from Seattle and just in the last 2-3 weeks is Kanyon's strength and walking back to what it was before. He's strong and back on his feet even with out his crutch sometimes. After having to have his head shaved in November and then again for all this, he's finally ALMOST got a head full of hair! I can't wait for his shaggy curls to come back!
On the back side of this experience my overwhelming feeling is gratitude. Really. I don't say that to sound more positive than I really am. That is really how I feel. Even in the midst of really hard times there was SO MUCH good happening to us, around us, and for us. God's presence was SMOTHERING us in every way. So if you're reading this you probably were part of that smothering so thank you! No offense but I hope to not need that smothering again for a VERY VERY VERY long time.