Utah Weekend and the Rescheduled Fontan

            The weekend before Brewer's fontan was pretty good. It was strange to be out of our house, town and little bubble of recovery and survival. Still, it was hard, and surely there were new challenges from leaving the comfort and routine of our home. But it was good to be doing something that was part of life before and it was even better to be able to see and spend time with family. Packing up to go down to Utah was a little overwhelming. It was even more challenging because my mind and motivation isn’t functioning like the efficient robot I’m used to. That could be from being pregnant, from the other demands of taking care of Phil, or from sleep exhaustion. Probably a little of everything, but either way I was a scattered mess trying to get everything we needed packed. I started a few days before we left which was good because I needed all the time I could get to get everything done. We planned to leave Saturday morning, but by Friday night I was nowhere near packed and ready to go. Phil had spent nearly the entire day at the shop, felt well while he was there and got a to done, it was a huge accomplishment. But by the time we got home, got everyone fed and in bed, it was too late and I was too exhausted to do anything else. Saturday morning I spent 3 1/2 hours packing, dropping Remy off, giving Boyd a haircut, helping Phil shower and pack and load up the car and we were set!!

            The drive went really well. We stopped in Idaho Falls for gas and lunch and the kids did great! Everyone enjoyed their meal and Brewer slept for a quite a while on the drive. Phil was able to sit in the passenger seat the whole time, and only reclined back every so often. We made it to Provo by 4:30. We were all excited to get there, but Phil was pretty worn out from the drive. We made it inside, to the newly finished remodel to find Mom and Beth. I hurried and got the tri-fold mattress out of the car while Phil waited on a dining room chair, the only piece of furniture on the main level. That was a little nerve wracking for me. I was immediately worried about Phil’s comfort level and how we would be able to cope for a week and a half before he would go back to Idaho. But it has turned out okay. We all ate dinner, got situated, and put the kids to bed. Nights have been rough lately and that night was no different. Phil doesn’t sleep for one reason on another. His body has a hard time settling down, especially on demanding days when his body is so worn out and sore.

            Sunday was a really good day. The morning was relaxed and with one o’clock church we had plenty of time to get ready. We went to the Moulton’s ward because President and Sister Jackson were giving their homecoming address after returning home from Spain. It was good to see so many family friends and listen to their messages. Phil went in on the wheelchair, but then opted to sit on a chair with his pad and had me take the chair our and bring his crutches in. It was a pretty big deal and a great accomplishment for him. I was so proud. After church we headed out back at the Moulton’s for a get together for JT’s homecoming. Again it was great to spend time with so much family. Then a little later we cruised over to the Jackson’s in the ranger and spent time with them. Phil accomplished a ton that day and he did so well. At the end of the day he was worn out and a little swollen in both his legs, but he felt good overall. Since he had such a long and taxing day he took an oxycodone and slept great. Looking back it was a wonderful day for him.

            While it was so good to see Phil making so many improvements and enjoying himself, I entered the dangerous territory of potential breakdown or meltdown. Up until when we came to Utah I was living in a pretty comfortable place called, denial. Denial is great. Who should really have to face reality when you can have your good pay denial? We have been talking to Brewer about his hospital stay. We want him to know as much as possible, but we didn't want to scare him or make him nervous or anxious in any way. We told him that he would be going down to his hospital and they were going to do another echo with the magic wand, only this time when they did it they would make him go to sleep first. There they would look at what needed to be fixed in his heart. Then a few days later his doctor would fix his heart and we would stay at the hospital for a little while. There he would get his own special room and of course we would stay with him the whole time, just like with Dad. He was pretty excited about having his own room. Whenever he would show excitement, we feel extreme guilt. Sheesh. On the drive down to Utah he said, “I can’t wait to go to my hosbibal (hospital)!!” That was just so heartbreaking. Once we got to Utah I found myself unable to hang on to the lies I had been telling myself. It seemed like I was constantly on the verge of a complete meltdown and I was afraid of what might set it off.
           I did okay until Sunday. During church the Spirit was felt and it started to tip me over the edge. I had to work hard to prevent from turning into a hysterical and sobbing puddle. I did map out my quickest escape from the chapel in case I couldn’t keep things under control.  Thankfully I was. But my ability to stay calm quickly faded that day and by the evening I was a mess. My entire family in Oregon had sent Phil and I pictures and videos of everyone together wearing their Brew Crew shirts and sending lots of love. It was wonderful, but it was finally what sent me over the edge. It felt good to let the tears flow, but it wasn’t solving anything. It was just a temporary release of nearly every kind of built up emotion. Dread, fear, anxiety, anticipation, the heartache that comes from not being able to take away a burden and pain from your child, sympathy, exhaustion, guilt were all mixed in with a surety and peace of a loving Heavenly Father, but not necessarily knowing His will. Thankfully, Phil and I were together and alone, I have never wanted to appear weak or broken in front of anyone and for the past 5 months that was even more important to me. Later we showed the pictures and videos to Brewer. He giggled through them and it was heartwarming to watch him watch his Oregon family.

            Monday we took it easy so Phil could recover from the busy weekend and prepare for Tuesday and the rest of the week. In the morning we were helping Mark McGuire with something for his business. He had been so extremely helpful with all of Phil medical equipment that we wanted to return the favor some how. We did a couple interviews that were videoed and it was an interesting experience recounting the details from everything that has happened and listening to Phil tell his side of what happened again. In the afternoon I spent a little while talking to the hospital about Brewer cath procedure the next day, making sure we were all set. We also needed to get check in times. That was pretty disappointing because the time was so late and it meant that Brewer wouldn’t be able to eat for quite a long time. It would put us through breakfast and lunch. But there was nothing we could do about it. I threw a little fit and they said that Jell-O or clear popsicles would be okay in the morning and that made life a little easier the next day. We also skipped over to Sports Clips and both Brewer and Phil got much needed haircuts. As always, Brewer charms whoever he is with.

            Phil had been planning on coming with me Tuesday. He had to be to an ortho appointment up there at 11 any way. But late Monday night he decided that it would be too hard to get up there that early and his Mom would bring him up for his appointment. Tuesday morning Phil decided to come with me, which I was so grateful for. But then I felt terrible because I had remembered the check in times wrong and we were at the hospital an hour and a half early. Or poor Phil was not feeling well. We decided to shoot over to the ortho clinic and see if they could get him in early and they did! That was great! By the time I needed to be back over to Primary’s for Brewer Phil’s mom had just arrived. I took Boyd and Brewer and headed back over. Brewer was a champ, as always, at getting checked in. He plays well, and then he listens and follows directions wonderfully. The staff is always so impressed. He got in his little gown and was excited about the yellow hospital socks he got to wear as well. Before we knew it Phil and Mom were back. Phil stayed with Brewer and I and Mom was so great to sit with Boyd and wait for us. We were corralled to the next waiting area where we would wait for the anesthesiologist to come get Brewer.

            Brewer settled in to play with teapots, a rocking horse, and the movie Big Hero 6 or “Baymax” as he calls it and was happy as a calm. Phil and I took a few minutes to catch up on his appointment. Everything looks great with Phil. Everything was healing and on track. He had good news about his right leg. At his last appointment we understood that it wouldn’t be until September 1^st that Phil would be able to bear weight on his right leg. That was a bummer and longer than the original 3-month mark we were told in the beginning from the bone graft. However, at this appointment he was told that in about a week or 2 he would be able to start bearing weight on his leg, starting at 25%. Then each week if it felt okay, he would be able to add another 25% working up to 100% on August 18^th. He was very happy about that. It gives him some more time to work on walking before this baby comes. His left leg on the other hand, while it is healing and he uses it all the time with crutches, isn’t looking quite right, in fact it’s looking pretty left. What I mean is it’s crooked. It’s functioning okay, but if over time it gives Phil trouble and hurts, it may need to be corrected. Before we decide on anything Phil will need to talk to the other surgery who did the work on that leg.

            After what seemed like an awfully long time, and after we all ate some imaginary fruit snacks, Dr. Matt came in with the consent and was ready to take Brewer. He was just so great with Brewer. Dr. Matt and Brewer talked about going down together and smelling a really yummy smell. He let Brewer pick out what smell he wanted to fall asleep to and Brewer choose bubble gum. The walk down to the cath lab was pretty far, too far for Phil on his crutches (and his wheelchair was still sitting in the car) so Phil said goodbye and kissed Brewer and I headed down with Brewer. Once we got to the cath lab Brewer was okay until all the other nurses and medical staff started talking to him. That’s always been a little overwhelming for Brewer. But he still did well and they all made sure Brewer wanted bubble gum smell and not skunk smell. Finally everyone was ready I handed straight-faced Brewer over to the nurse and headed out of the cath lab. I thought for sure he would cry, but I never heard him.

            I met back up with Phil, mom and Boyd and we all decided to go get some lunch since it would be a couple of hours. We headed down town Salt Lake to Café Rio and while I always feel guilty for leaving the hospital, it felt good to eat some real food. While we were eating, the cath lab called. Immediately I panicked thinking something was going wrong and now we were a few miles away!! But everything was going great. She even said Brewer had been super interactive and cute before he fell asleep and then fell asleep with a smile on his face to the bubble gum smell. What a relief!! They were calling to see how we thought Brewer would do having the echo after he woke up, instead of keeping him sedated. From their experience they thought he would do well. They had even called Dr. Williams who thought he would do great and I did as well. That sounded great to us because it meant less time for him to be under the anesthesia and more time for him to recover so we could go home. After we got back to the hospital it wasn’t long before he was done and before we could see him. Dr. Matt came and talked to us first. He just loved Brewer and said he did really well. He was great! Then Phil and I got to go see Brewer. He was sleeping when we came in, but woke when he heard our voices. Immediately he started crying, which was heartbreaking, but quickly we realized he was crying because his yellow sock fell off and all was well once we put it back on. Phil was able to sing to him and stay with him while I went down to the cath lab and talk to Dr. Martin about Brewer’s results. She was pleased with everything and said his heart looked great for the fontan. She did say that she found 3 collateral vessels and was able to coil one. The other two went to the lower part of the heart and would be taken care of with the reconstruction of the fontan.

Before long before was out of the PACU and into a recovery room. He was THE BEST little patient ever. He ate root beer slushy, got a blue sippy and eventually ate all sorts of crackers and cookies. He even did such a great job of keeping his leg straight, which he had to do for FIVE hours before we could go home.             A few different times during the day, once before the cath and once after we spoke with Annie and then Bonnie the NP’s for the cardiac kids, who helped arrange all the pre-op stuff for Thursday’s big surgery. The lab was able to draw blood during the cath, which was heaven sent, x-ray was able to come up to Brewer’s recovery room, and the prescription we needed was called in to the pharmacy at the hospital. It was all so helpful and made it so easy. Towards the end of Brew’s stay I thought it would be a good idea to zip down to the pharmacy to pick up the prescription and save a little time. Plus it would be a good distraction. I convinced the nurse to let Brewer come with me in a wagon because he would still be able to lay down keeping his leg straight. That was the only other time Brewer cried while we were at the hospital. He didn’t want to go in the wagon; he wanted to drive one of the cars. Silly boy. The nurse swooped right in and said he could go in the wagon now and then when we left for the car he could drive one of the little cars. He was immediately okay with that. We made the quick trip down in the wagon and by the time we got back they were willing to let us go a little bit early. It was great and felt so good to be on the road back to Phil and Boyd!

            When we were almost home Brewer started crying in the car. Usually I can get him to tell me what is wrong, but this time I couldn’t get anything out of him. He was just so sad and grumpy. So sadly it was the beginning of a fever setting in. We didn’t realize it until the next morning so that night was a little rough. After he got up on Wednesday he was pretty miserable to I took him to the store and picked up some Tylenol and once I convinced him to take him he felt so much better. He had a great nap, we ate some street tacos and Amy, Emmett and Caroline flew in that day. It wasn’t too terrible. I tried to get some laundry done and start packing for the hospital the next day. The next day. Oh man. Everything was great about that except that it was the day before Brewer’s open-heart surgery. I don’t think I was always the nicest or happiest person that day. All I really wanted to do was find a closet to climb in and then just disappear. Phil wanted the day to be special with the family and while that was great and would have been awesome, it was difficult to make that really happen. We tried for a movie with the boys and that was actually pretty fun. It was a lot of work for Phil and it meant a ton that he came and sat through the whole thing. But Brewer still wasn’t feeling well and I had a pile of things to do to get ready for the morning. After the movie we picked up some ribs for everyone to celebrate Dad’s, Beth’s, and Phil’s birthdays. Steve and Rachel came over and everyone was wearing their Brew Crew shirts. It was good to be all-together and the food was really yummy! When Brewer was done eating he got a little grumpy and I told him that I could go in with him and lay on Phil’s mattress and snuggle for a little bit. It was still pretty early for bed and we wanted to give Brewer a priesthood blessing. He beat me in and when I found him he was snuggled in his own bed ready to go to sleep. Oh no!!! That meant that we had to hurry and shower Brewer and give him the blessing. And it meant that I was a mess. I couldn’t hold back the tears any more. I sobbed through Phil anointing the oil and the blessing to seal the oil that PopPop gave. Then Phil offered to give me a blessing as well. I was very glad for that. There’s nothing quite like men surrounding you with love, willing and ready to use their priesthood as they lay their hands on your head.

After the blessings, expressions of love and hugging all around it was time for the shower and a few items we had to do for surgery prep. Brewer wouldn’t get in the shower by himself so I got him with him, but then he wouldn’t let me put him down. Once I was finished washing him he didn’t want to get out. We stayed in a just snuggled and it was still hard for me to hold back the tears. This sweet kid loves his mom so much and here I was prepping him to go through something so hard. I noticed in the shower that Brewer was still so warm. The fever was still hanging around. An uneasy feeling set in as I worried what that would mean for surgery in the morning. But I pushed those feelings aside…after all I still had so much left to do and surely it wasn’t in our cards to call off surgery, that would be too much. After much coaxing we managed to get jammies on and Brewer in to bed. Then it was time to finish packing and loading the car. It was 11:30 by the time I had everything packed in the car. Then I just had to organize what we needed for the morning. About midnight I crawled on to the mattress on the floor by Phil and just laid there. Boyd was in a sleeping bag on the other side of the bed and Brewer was on a mattress pad at the end of the bed. It was good to all be together for those moments, but the morning was approaching much too quickly for my liking and I needed some sort of sleep. I’m not sure at what point it came, but it came and went for the next 4 hours.

At 4:30 AM I snuck out of our room and got dressed, then woke up Phil and helped him with a few things. By 5 we were ready to load up and we took the elevator down. By 5:15 we were on the road for our 6:30 check in time. The drive was good and Brewer was happy enough. He was looking forward to driving the Harley in the waiting room again. We hauled up to the waiting room, checked in and got our buzzer. Brewer road around on the bike and before long we were back to our own room, where we found out pretty quickly that Brewer had a fever. The nurse thought Brewer sounded okay, but said she needed to talk to Dr. Burch and the anesthesiologist. While she was out we changed Brewer into hospital clothes and his attitude changed—not because of the clothes, but because he wasn’t feeling well. He was warm and grumpy. After a few minutes Dr. Burch came in through the door. It’s a strange feeling to be in the same room with that man. Even as I sit here it’s hard to put in to words how I feel. That man has saved Brewer and in turn saved our family. His hands have been inside of our son and have made the necessary changes to his heart to give him the chance for the best quality of life. I will never be able to express my deep gratitude for what he has done for us and for what he has dedicated his life to. And yet he is just a normal guy. When we are with him he feels human and real, but when I think about his skills and his service he seems superhuman…still not quite getting the right wording…

Dr. Burch told us that when he heard Brewer has a low-grade fever that his first instinct was our family and what we had been through this year. He thought it would be devastating to push back surgery and so we should just push through it. As he continued in to the hospital he kept thinking, more about our family and what we have been through. He then thought what would be worse than the fever posing a problem by setting Brewer back, keeping a less than two-week stay in the hospital to possibly two months. He discussed the risks with us; the main risk would be a possible infection that was festering inside Brewer, traveling to a new piece of hardware, 3-inch long gortex, which would need to be placed for the fontan. If that got infected we would be in serious trouble. The other risk involved the lungs. If they were already compromised it wouldn’t put Brewer in a good spot to recover. The fontan requires gravity and so much support from the lungs that they need to be as healthy as possible. 

We also discussed what might have caused the fever. It could have been caused from the cath, that there could have been blood that pooled up at the sight of the cath in Brew’s groin. Or if could have been from the anesthesia and breathing tube placed during the cath. They said that sometimes that can cause a bug that has been mostly hidden to be stirred up. Or it could have been a bug that he caught. Whatever it was, Dr. Burch, the anesthesiologist and Phil and I decided that the risks were just too big. We wanted Brewer to do well first of all. We have always been about fighting for him and giving him the best chance. We also couldn’t do something harder; we couldn’t be in the hospital for another 2 months. Not after Phil’s accident and recovery and not being 7 and 8 months pregnant. As the conversation went on, many feelings started to flow, but peace was the predominate emotion.

After the decision was made, and Dr. Burch recommended waiting 6 weeks, we hurried and dressed Brewer and hopped in the car before it was 7:30. Driving back to Provo was strange. Here we were driving away from what we had been preparing for and dominating our thoughts for weeks now. It wasn’t going to happen that day and now we had six more weeks to wait and to dread the build up again. Once back, Brewer got some Tylenol, I got about an hour of sleep before my phone rang. It was Linda with cardiothoracic surgery, rescheduling Brewer’s date: August 25^th. My first thought was, the day before my 31^st birthday (good thing I’m an adult and birthdays don’t matter much) and secondly thank goodness it was before school starts and the germs start to fly. August 25^th.

I couldn’t sleep any more after that. I hurried and packed everything up while the boy played with Phil and before we knew it we were on the road back to our home in Idaho. Everyone slept. Brewer had a little more Tylenol and he slept for several hours, which made the ride very nice and very quiet. It always seems like those quiet moments I find in the car are the only times I can really reflect on my thoughts. I thought a lot about what this change meant for our family and continued to try to wrap my head around it all. Out of everything that has happened this year, the timing of Brewer’s fontan had received quite a bit of attention from me. The bottom line was it wasn’t happening and there was nothing we could but embrace the next 6 weeks.

As the drive continued, exhaustion began to set in. It had been a while since I have felt that kind of tiredness. It’s the kind that bears a tangible weight and which presses down from a physical and emotional perspective. When we got home, we got Phil settled in pretty quick and Brewer was content to be with him. Boyd was my champion and helped me unload every single thing out of the car. After that I had to think of something to feed my kids and just as the ramen noodles were done, a knock came at our door. It was our good friends the Struttmann’s. They came over to tell us that there was a BBQ going on in honor of Brewer. It had been planned for some time. The idea of it was to have our friends gathered together in support for Brewer, wearing their Brew Crew shirts. Even though his surgery was postponed they were doing the get together any way, with no idea we were on our way back. Audrey caught word that we were back and they came straight over, told us about the BBQ and invited us to come.

I was so tired and Phil seemed pretty beat too that my first thought was to stay home. My second thought was to stay home because I didn’t want to go and be an emotional mess. But our kids needed to run around a bit and seeing familiar faces that we love would be good for our souls. And that was just it. Seeing everyone was so overwhelming in such a wonderful and uplifting way. It was extremely touching to see our valley family gathered together for our family, for our lionheart. It was something I will be able to forget or want to forget. We are so lucky and so blessed.

Thankfully over the weeks, the peace has continued to prevail. Whether or not this was part of “our plan” it doesn’t really matter, although I suspect that it just might be. What I do know is that there is someone, someone very loving, guiding us, watching us, and helping us bear these tough things. Peace has been our blessing and our family, near or far, related by blood or not, our joy.