Phil's Story ~ Being Home

Warning!! Extremely long and if you follow us on Facebook this is all probably repeated information. Plus it's full of all sorts of typos. Just racing to get caught up before the next adventure! 

    It’s been a while since I’ve written anything about our adventure or better named would be our survival. Maybe that’s why. We’re surviving and there isn’t much time for anything else. Writing seems to help me process my own feelings and most often realize blessings. It also seems to be a place where my mind is enlightened and I can find strength in the Spirit which guides my mind.

Since we’ve been home from the University of Utah Hospital and Rehab Center A LOT has continued to happen. Nothing about what our family has gone through over the past two months has been anything like I would have expected. 3 months into this I would not have thought that this would feel harder. Don’t get my wrong, there has been improvement. Phil’s bones are healing and he’s a little more able to move around, although comfort is a rare luxury for him. But nearly 3 months down the road our lives and this recovery definitely feels more challenging. It may be that we’re tired and worn down. It may be that the new set of challenges are more difficult for us to handle. Or maybe we’re being asked to bear a little more, to stretch us more. I’m guessing it’s a combination of all of those things. Whatever it may be we’re ready for a break, the “break” or “corner” that we’ve been waiting for Phil to reach. Did I mention that we have been waiting for this for two months now? And that it always seems just within reach, but never attainable with our own efforts and always foiled by another set of setbacks and challenges.

     So shortly after we were home from the hospital Phil decided that he didn’t need to be on oxycontin. He didn’t think it was really helping and he was facing more serious issues, like having a bowel movement. Who would have thought that being able to go to the bathroom would be such an issue and cause so much pain and concern? A few days after stopping the oxycontin, Phil started feeling feverish twice a day, had terrible headaches and was nauseous as well, along with no bowel movements. We made the connection that most of the terrible symptoms he was having was withdrawal. Sure enough that was right. We were told they would last about 5-7 days. It lasted a brutally long seven days. In the last couple of those days, when things were looking a little better, Phil got extremely nauseous and was in quite a bit of pain, for two days. That was May 2^nd and 3^rd a Saturday and Sunday. Monday, May 4^th, we went in to have in INR checked and to talk about all the issues. By the time we got to the hospital Phil was looking pretty terrible and his doctor admitted him for some testing. Turned out his blood pressure was very low. They quickly hooked him up to some IV fluid which helped his pressures and then he had some tests ran as well.

     Before the CT scan and before we got any results back, Phil’s uncle Chris Monson who is an anesthesiologist as EIRMC, drove up from Idaho Falls and spent the evening with us. I’m not quite sure what prompted this kind act, but I do know that it was prompted and such a blessing to Phil and I. It was a blessing to Phil to know that his educated and medically capable uncle whom he loves, was by his side. It was very comforting to me to a have some family and support and someone to help explain results and help make the best decisions. Chris and I helped situated Phil for the CT scan and we waited together while they pumped the gross fluids through Phil to get the images. Unfortunately the scan made Phil get sick, making him feel worse than he already was. Results came back a little while later and blood work showed elevated liver enzyme levels and a CT scan showed some distress to his bile duct. Both results were surprising. Chris had called down to EIRMC while we were waiting for the results and was able to use his connections to talk to the radiologist on call who would be reading Phil’s scan. They had an in-depth conversation, much more telling than the report that came back. We learned that Phil’s bowel were backed up with stool (a previous x-ray that evening showed minimal stool), it also showed the distress to the bile duct as well as a confirmation (something  that I had been pushing for several days) that the lump and pain in Phil’s back was caused from a rogue screw that was trying to push its way out.  The news was stressful and the next step was to get an ERCP. A procedure that puts a scope down your throat to get a view of what’s going on. Chris made several phone calls to his colleagues and discussed Phil’s case with each of them. They came to the conclusion that Phil’s lack of bowel movements was also a very important issue that needed to be resolved and had Phil admitted to EIRMC by a GI doctor, Dr. Behrend.

      By the time we got results it was too late to be discharged and Phil wasn’t really in a very great place. Earlier in the evening, a good friend, Miriam who already had Boyd over for a playdate, swung by the hospital and grabbed Brewer too. Then after work, Nate took over, fed the kids dinner and put them to bed and slept at our house. We couldn’t have done it without great friends and family! The next morning I hustled home to get the kids breakfast and ready for the day. Boyd and Brew came back with me to the hospital and Boyd walked to school from there (2 blocks and we walked him to the corner.) Naturally as a semi-safety parent I texted his teacher to make sure he made it. Then came the stress of deciding how to get Phil to EIRMC. We could drive him in his grandma’s car (did I ever mention that our Sequoia was totaled during our UofU hospital stay?). It wasn’t and ideal ride for Phil. He had a mattress to lay on in there but the wheel chair was SO hard to load in and then I would only be able to take one kid unless I put Boyd in the front seat. I scrambled to know if I should take them, how to get Boyd down there if I was taking Phil, and had to pack for all of us for at least a couple days. I hurried home and packed a few things for the boys. Phil’s mom decided she would drive up and take the boys back to Utah with her. It sounded like the best plan for them, especially for Brewer. Talk then started about taking an ambulance down to EIRMC. We of course, would have met any sort of out-of-pocket deductible so it wouldn’t necessarily be an added expense. Not that we wanted to just add more bills and excess to our insurance, but, Phil did think that he would be more comfortable in the ambulance. That’s was we decided to do, which meant I could take Boyd and Brewer in the car and just meet Phil at the hospital. It turned out that the ambulance ride was pretty terrible for Phil and the boys and I arrived about 30 minutes after he got there. He was in rough shape and the process of being admitted before they can really do anything to help is to painfully long. Phil’s grandparents, Grandma and Grandpa Monson met us a little bit later and took the boys back to their house to wait for Grandma Jill to get there.

      After what seemed a like a long time (probably around 4 or 5 pm) the doctor was able to see and assess Phil. They started him on more IV fluids as well as intravenous nutrition to combat the weight loss that he has experienced. They weighed him on the bed, with both of his braces on, his huge heavy pillow from home, plus a bunch of other pillows and it showed 142 pounds. So we guessed that Phil weighed about 135 pounds. A total loss of about 20-25 pounds!! Yikes!! He also prescribed or charted a shot of Relistor (goes into the gut) that is to help with constipation related to narcotic use. It worked almost immediately. Phil and I had plenty of practice that we were able to take care of things and the nurses and aids were quite surprised by our efficiency and even some of our tips and tricks for making the process easier. We learned at the University of Utah, the more you can take the load off the nurses, because they’re taking care of 4 or 5 other patients, the nicer and happier they are to take care of you. Plus I would way rather take care of Phil than some of the nurses any way!! The Relistor provided some relief and comfort for Phil allowing him to not feel so miserable. But we still had a night to endure and with a little PTSD from the U of U hospital experience it wasn’t the best.

The next day, Wednesday, Phil was scheduled for the ERCP. Phil’s mom had driven up the day before and Grandma and Grandpa Monson all helped with the boys. Phil’s mom came a couple hours early to the hospital, before the procedure, so that I would be able to run across the street and have a quick OBGYN appointment since I had missed a few. I wasn’t worried, but I also wasn’t sure the next time I would be able to get down to Idaho Falls for an appointment. It was quick and the timing worked out well so that I could be back before Phil had to head down for surgery. It was actually a really nice moment where I was able to hear baby’s heartbeat for the first time—they didn’t have the sound on in the first ultrasound and appointment.  Phil asked Chris to be his anesthesiologist, which was quite comforting to Phil. It would be to me too. Whenever you’re dragged back to surgery you have to say goodbye to all your family and loved ones who are with you. Well Phil got lucky enough to have some family with him the whole time. It was really great. The ERCP revealed that Phil’s gall bladder was not functioning. It was filled with sludge and the bile duct looked perforated, like a stone has previously cut its way through. That was probably the pain and nauseousness he felt over the weekend. The gall bladder was so dense with sludge the dye they tried to inject into wouldn’t even penetrate it. =( Needless to say, we were shocked. I wasn’t quite sure if I should cry or laugh. Seriously!? I wanted to cry for Phil that something else was going on!! And it meant we were staying at EIRMC and in the hospital for another night and another surgery. It was another uncomfortable night, although they did have another bed brought to the hospital to help with Phil’s comfort. Turns out it only helped for a couple hours and then it wasn’t great.

     Thursday he was scheduled for the gall bladder surgery. Phil requested Chris to be his anesthesiologist again, but he wasn’t able to, he was caught up in a heart case. So Ken Bateman’s brother, Vince, was assigned. Again it was nice to know that it wasn’t just a stranger looking out for him. The surgery was really quick and the doctor said everything went smooth. He didn’t think there was any reason that Phil would need to stay another night, but that would be up to Dr. Behrend who had admitted him. It turned out that Dr. Behrend felt good about Phil going home. There wasn’t going to much else to do for him other than watch and see how things progress with his bowels over the next few days. It was a relief to go home.

     The next couple days Phil managed to survive on Tylenol. He refused to take any narcotics. He was done with those and havoc they reaped on his bowels. I have to say that I was super impressed with his pain tolerance and determination to push through. The pain from surgery however, made it practically impossible to get comfortable, adding to all the other areas of pain. He couldn’t lay on his right side for more than a few minutes because the damage and repair to his acetabulum, it was too painful. He couldn’t lay on his left side because of his AC should separation. It was also painful for him to lay on his back because it hurt his tailbone (no more fat and muscle to support and pad the bones), plus there was that rogue screw that was trying to push its way out. Now he didn’t have his stomach as an option either. It was pretty rough, but he pushed through and after a couple days he started feeling better. The boys were brought up with some groceries and the rest of our things from Utah late Saturday night.

     Phil’s parents left very late Saturday night and the boys were up early to wish me a happy Mother’s day. It was very special and very good to all be together on that day. They were so sweet to and had brought a giant pot of flowers that they helped Grandma Jill plant for me. They even had special instructions on how to help water it every day. They were so excited about it! We even hustled around (for 1 o’clock church, it’s a pretty big process to get everyone ready) and managed to stay through the sacrament service, a total of 30 minutes. That was great to go and to feel the spirit and take the sacrament—always so rejuvenating.

     In between the sweet and tender moments that come every so often, everything always seems just so hard. If it isn’t one issue that is causing pain, discomfort, discouragement, depression, or anxiety, it’s something else. Shortly after we were back from EIRMC, sleep became a very big issue for Phil. Having already walked down that path and knowing the very scary place that led, we became concerned and sought out medical help quickly. Phil’s doctor prescribed Ambien. I was pretty nervous for him to take it. Many people say they try to get up and walk around. I was so afraid that he would try to get out of bed and walk on his fragile legs that had just been repaired and undo all the progress. Let’s just say that I didn’t sleep all that well. The first night did help him get a little bit more sleep, about 4 hours or so. That was helpful with his anxiety and sleep deprivation but it still wasn’t enough for his body and mind. The next night he took a whole Ambien and that was terrible. He tossed and turned and was a tad crazy. Finally after living through this experience with a combination of stress (although I felt I was handling everything okay) and being up multiple times in the night, every night, it caught up with me and I caught a terrible cold. It felt like strep throat. And after a week I wasn’t feeling any better, probably worse. That made everything on my end so much more difficult. And probably for Phil too. He hated asking for help and asking me to get up in the night when he needed something. But we really didn’t have a choice. At one point I woke up in the night feeling pressure and pain in my ear. The next day during Phil’s appointment for sleep I had him check my ear and sure enough it was red. It wasn’t terrible so I passed on the antibiotic hoping it would feel better the next day. While my ear did feel better the next day, my cold continued to feel worse. And being pregnant there is NOTHING you can take to help ease the symptoms. So I called back in and asked for the antibiotic. They helped, but didn’t seem to cure my cold after 10 days. When I finished the prescription I still felt the same symptoms, just much less. I was so frustrated but after a few more days I was feeling completely better. Thank goodness.

            In between all these physical challenges that make it difficult to get through the day, we have also been trying to manage what is happening at the shop, taking care of the billing and paperwork there, dealing with medical bills and phone calls, trying to schedule and arrange Phil’s bone graft, my fetal echocardiogram, take care of a couple cute kids, and figure out when would be a good time to schedule Brewer’s Fontan plus making shirts for friends and family to have to support him. There was never a minute to just sit down and decompress. There was always something to do and exhaustion was ever present. Phil would also ask for different tasks to be completed here and there. We needed to get our road bike sold, the trainer and the grill. We also needed to finish cleaning up the campers, take pictures and put them up for sale too. And then there were thank yous. Phil was adamant about getting those done ASAP. When the kids went to bed I would sit down and write a few until there was something else that needed to be taken care of. Like I said, it was exhausting. The weird thing is that we have done something similar in exhaustion with Brewer. In some ways I think Brewer’s challenges and demands were more difficult, but in other ways Phil’s recovery has been pretty demanding of our family as well. I still had Phil on my team mentally and physically. He could take a turn with Brewer when I was worn out, and he was still working full time and managing everything at the shop, not to mention the medical bills. I think this has been the time in my life that I have had the most on my plate.

            I am so grateful for family and friends who have stepped in to help us during the first couple of months. At least four times friends (Audrey, Jessica, Tess, Annisa, Loriann and Maralee) have come to my home when I have not been here and have cleaned everything, organized and have taken and done our laundry. We also had a steady stream of meals coming from our friends for nearly two months. It was pretty incredible and humbling to see the love that people had for us. One of our friends move furniture around for us (something I couldn’t do alone for sure) and another installed the ski rope for Phil to use as a trapeze. It was actually quite difficult to install because of the fire code regulations in our condo. We were glad for his construction expertise. Two friends were so helpful with Boyd every single day. Jen would pick Boyd up for school every morning and Tiffany would bring him home from school, often keeping him a little longer to play. JaLyn picked up and dropped off Boyd every time he had a tball practice or game. Steve’s cross fit group did a WOD workout one day in honor of Phil and many people gave a donation to help our family. It was so very humbling. Phil’s sister Amy did a sugar cookie fund raiser as well. I know the work that goes in to making those cookies, and it was a great sacrifice of her time to do for us. Jade has the inspiration to pick up Boyd when he was out on a business trip in Montana. He picked Boyd up, just hours after Boyd’s last day of school, in Idaho Falls and drove him for two days to get back to Oregon. There everyone has pitched in to help keep him busy and having fun. It’s been a huge blessing for us to have him there. He is having way more fun and keeping so much busier than we would have ever been able to here. By the time he gets back, he’ll have been gone for 4 weeks. Sydney helped with creating Brewer’s Brew Crew shirts, they are amazing, and my brother Justin had the inspiration and kindness to help me with getting the shirts printed, shipped and ordered. He also has helped us get fresh local produce for the entire summer. It really is so inspiring and humbling to know that we have so many wonderful people in our lives. Phil and I pray every day for everyone that is helping us and praying for us. We pray that their loads will be lightened and that they can know of our gratitude. We hope one day we won’t be the ones who need to kindness and service and that we can be on the giving end. 

            In the midst of the challenges every day, there have been good moments as well. Getting to church each we always felt good, even if it only was for 30 minutes. And the boys. The boys were always a bright spot when they needed to be. Their perfect love for us always brought a little hope and could always make Phil smile when he needed it most. More so than I could. And for that, I am so grateful .It reminds me of the perfectness of the plan of salvation and the perfectness of the design of the family. We are so lucky and so blessed to have such wonderful boys.

      The sleep battle continued but it became manageable. Phil’s bowels also seemed to be working themselves out, although there was no sign of improvement in being able to pee.  Around that time we were getting ready to head back to Utah. My Mom so lovingly flew in and stayed with the boys so we wouldn’t have to take them down with us. We left around 1:30 AM, after getting pretty terrible sleep. Phil laid in the back and tried to sleep and I drove and tried to stay awake. I chewed seeds and had quite a few suckers to keep me awake. If anyone knows me, driving at night is a pretty great challenge. But it meant one less night in an uncomfortable hotel for Phil.

      We arrived at the University of Utah Hospital just as the sun was getting ready to come up. Sometime during the second part of the drive, the screw in Phil’s back was on the move again, ripping tissue and creating a swollen blood pocket of pain. It was so miserable and not what we needed. We were able to check in and get Phil into surgery prep. But there wasn’t a whole lot we could do about the pain in his back. The only silver lining was that he was going to have that screw adjusted the next day and that this hadn’t happened earlier. The angiogram went well and didn’t take too long. Phil’s Mom came up to the hospital while Phil was in the OR and it was so great to have her with us for the rest of the day. It was exhausting mentally after having driven all night and with our busy day. Before the angiogram they informed us that Phil would have to lay flat for either 2 hours or 6 hours if a specific device wouldn’t work for Phil. We should have known he would be destined for the 6 hour stay in recovery. It seems like all along the way, if there was ever a better option and a worse option, Phil would always be left with the worse option. Except on the day of the accident. That day a lot of good options happened that kept Phil alive. Maybe all our good luck was taken up then. =) But unfortunaltey after the angiogram Phil had to lay flat for 6 hours. It was miserable. The screw was killing his back. His heels hurt from pressures sores we had been trying to cope with. The nurse was even hesitant to barely lift a leg to put a pillow under the ankle. It was brutal. And it was so dang hard, as always, to get something for him for pain! There has to be a better system where the doctors can be more available to prescribe medications. Sheesh.

     When Phil was ready to be discharged, it was about time for me to hop over to Primary Children’s Hopsitla for my fetal echo (exhale…) and for Phil to have his follow up ortho appointment and x-rays with doctor Rotherberg. We were so grateful to Phil’s mom who could help us manage these events. I helped Phil to our van and got everything loaded back up. Then Mom drove Phil down the road to the orthopedic center and I ran down the street to PCH. I was able to be checked in quick and the appointment was a lot faster than I thought it would be. At first I kept watching the screen, watching the heart beat and the little body wiggle and move. Then I realized it wasn’t helping my anxiety. I would think to myself: that side looks small, there isn’t enough blue color, or not enough red. I was creating a monster in my mind. Previous to this appointment I was very calm and felt a lot of peace about. I reminded myself of that and reminded myself that while I knew what I was seeing, I wasn’t a tech taking measurements or the doctor reading the results. I allowed myself to relax and took a couple vidoes of the screen. When she was done the cardiologist came right in. Dr. Williams (Brewer’s cardiologist) was also there that day and popped in to listen to the results. I was so glad that he did. The cardiolosits reading the results said that everything looked just fine. Siiiiiiiiigggggghhhhhhhhh. Whew. Finally. He explained that there still may be small undetected holes, but nothing major and nothing to be worried about. What a relief. I couldn’t wait to get back to Phil to let him know. I chatted with Doctor Williams for few more minutes who asked about Brewer and he asked about Phil. I explained a little more in depth about what happened and asked his opinion about pushing surgery back, but not too far because of the new baby. He was so kind and said he would talk to Dr. Burch and he was sure because of our circumstances it wouldn’t be a problem to push is back again, as long as Brewer was doing well. It was great to hear.

     I hurried back over, through the outpatient building, through PCH, and finally through UofU, jumped in the car and met Phil and his mom at the orthopedic center. He hadn’t met with Dr. Rothberg just yet and I was glad I hadn’t missed too much. I told Phil the good news about our heart healthy baby and it was a such a sweet moment. Rothberg came in and was pleased with Phil’s progress. He was really happy about the flexion in both his knee and his ankle and how it was all healing. He then told us that it would be ANOTHER 3 months after this bone graft that Phil wouldn’t be able to put weight on his right leg. What!?! That was a blow for sure. One that was pretty hard to swallow. But what do you do? What can you do? Ugh. It will be 6 months for Phil before he can walk, or at least start trying to. 

     The ultra sound tech had done us tremendous favor during the appointment as well. I had asked her, if it wasn’t breaking the rules, to check the gender and write it down for us. I told her that in a few more weeks when we have our anatomy ultra sound, that my husband wouldn’t be able to come because he was recovering from an accident. I asked her to write it down so we could open it together. She was very nice about it and asked about our other kids and what we thought it was going to be and handed me an envelope at the end of the appointment. Holy Cow! That night at the hotel, Phil’s mom and dad came, as well as Steve and Rachel and their kids. They brought us some yummy dinner and it was wonderful to spend time with family. Phil got a blessing from his dad and brother and before everyone left we opened the envelope.

     It was a GIRL!

     No way. It was surreal for sure and such a sweet and tender moment. I honestly never thought I would have a girl. I’m not sure why. I bawled a little bit into Phil’s chest trying to process it. My immediate thought was Boyd and Brewer. They were going to be thrilled. And I can’t wait to watch those boys dote and love on her. It’s so crazy. We shared the news with family, but not just yet with the boys. We wanted to be there with them when we were home to give them the news!

The night wasn’t too terrible. In the morning we packed up the van again, we had a lot of stuff, pillows, blankets, cushions, clothes and a box of medical supplies, and headed back up to the hospital. Phil got checked in again to the pre-op and just before Phil went back, his parents came and were able to spend a few minutes with us. Surgery took forever. It really did seem like a long time. It was the first surgery or procedure that started after 12 o’clock and went into the evening. Maybe that was it. But sheesh it felt long. When he was done he conned the nurse in the post-op into letting me come in, something they never do unless the patient is disoriented (I had to do that after the right leg surgery and Phil thought he was in Oregon). Gladly I zipped down to see him and before long he was up on the 6^th floor to spend the night. He came out of that surgery really well and had a good nurse through the night. Besides feel nauseous right off, he slept the anesthesia off for a good while.

In the morning we got a nurse who was not great. I think she was learned and knew what all the protocols were, but it was almost like she thought she was too good. She thought that she knew what was better for Phil and wouldn’t take what he wanted or needed in to consideration and even argued with the orthopedic team (the people that would be discharging Phil). It was so frustrating, especially for Phil. Phil was also in a lot of pain. A lot more than he thought he would be. His femur ached so badly and his knee, where they took the periosteum for the flap, killed him. The pain he was experiencing was a surprise to us. After Phil got his x-rays done, with a really great tech that was very compassionate, we had to fight the nurse, the middle (wo)man between us and ortho, to get Phil discharged. The battle was over his low blood pressure, which had previously been low, his doctors were aware and were okay with because Phil wasn’t symptomatic. It took seeing Dr. Rothberg in Phil’s room and another phone call to get him out of there. It wasn’t until 5 that he was finally cleared to go. Perfect timing. Rush hour in Salt Lake. Hopefully we never see her again and at some point she fades from our memories. =/ We stopped at crown burger on the way home and then fought our way through traffic stopping two more times along the way. It was late when we got back and Phil was in a lot of pain plus he had developed a very back headache to go along with everything else. I felt so bad for him.

     We coped for the next couple of days with the help of my mom. She was able to keep the boys busy and we tried to help Phil find any comfort of relief from the pain he was in. We dug out our old knee ice machine, only to find out that it was broken. I tried and tried to fix it, but to no avail. Luckily, someone else had one we could borrow. We also were able to tell the boys we were having a girl. Boyd reopened the envelope and it was sweet to watch him read the word “girl” and they have been excited ever since. A few days later, Ashton sent us a little newborn size dress. It was crazy and made it feel so much more real. Although I still don’t know how to accessorize and do all that girly stuff. It was sad to say goodbye to my Mom and the boys came with me to the Jackson airport to drop her off on Sunday. It was amazing to have her at our house to help with the boys. She also helped organize and clean. It was wonderful. On the drive over the Teton pass Heavenly Father certainly kept us safe and kept us from being in a car accident. I felt the impression to slow down before a curve and took plenty of caution not to go too fast. If I had, surely we would have been hit in the driver side (affecting Brewer and I) by a car that either was driving too fast or wasn’t paying attention and was more than half way in our lane. It was pretty scary and I am so grateful for a loving Heavenly Father that knew we couldn’t handle any more difficulties that involve a serious car accident. So grateful to have dodged (literally) that mishap.

      A week after Phil was home from the bone graft, still feeling very sore, still feeling pretty nauseous, and not having a bowel movement, we were in to the hospital. GI had prescribed him the Su-prep, colonoscopy prep, but he was too nauseous and throwing up that he wasn’t going to be able to take it at home. Ugh. So in to Driggs, where they could hardly place an IV. It took quite a lot of work to get that done. Getting some fluids in him and some better meds of his nauseousness was helpful. Then we were on to trying to get that su-prep into his stomach to promote a bowel movement. We opted for a NG tube, thinking, sure!, we’ve done that before. The small yellow tube that Phil had in the ICU and Brewer came home from the hospital with? We were dead wrong. This tube was huge and hardly flexible. Phil worked the tube down, much to his dismay and discomfort. He begged for a minute for them to take it out, but he put up with it. The nurses then suctioned a bunch of bile out of his stomach. Both nurses commented on how much was in there. That wasn’t awesome, but it sure was helpful in making Phil feel better. They soon were under way in putting the liquid in Phil’s stomach and we were on our way home shortly after that. That stuff works! Holy cow! We were happy to have some results finally and felt like we were back on track with bowel movements.

      We geared up the rest of that week for the follow up appointment down in Utah at the orthopedic center and for a small cath procedure to get Phil’s filter removed. We drove down in the afternoon with Brewer and got to Salt Lake in the early evening. Brewer was so excited to go because we told him that there would be a swimming pool at the hotel. As soon as we unloaded he was getting undressed to go down to the pool. I got in with him and Phil came down with us and cheered on his jumping. After a quick swim, it was pretty cold, we changed and Phil was feeling ambitious and we walked across the street and up to City Creek. We trudged all the way through to the food court where we got yummy sandwiches. It was quite the process though. Phil was exhausted by the time that got there and laid back in his chair while we got some food. Brewer was a good sport and just followed along. However, he did get tired from time to time and took turns walking, riding with Phil and then I would carry him. On the way back Phil thought he needed some ice cream (heck ya! Anything to put on the calories) and we went out of City Creek along the road. WAY better than navigating through the way we came. We stopped, got some ice cream and then headed back to the hotel. By then it was pretty late, Phil was burnt out and Brewer was too tired so I pushed Phil and carried Brewer on my shoulders. It was quite the site! But we made it and it was so fun! We settled in a Phil fell asleep before Brewer did. I packed everything up, got clothes ready, and made sure everything was in order for an early departure in the morning back to the hospital.

     In the morning I got ready and packed up some of the car while Phil and Brew slept. Then everyone else got ready and the three of us drove up to the hospital and checked in to pre-op. We were professional by now. The procedure was a little later than originally scheduled. By the time they took Phil back Brewer wasn’t the happiest kids, but it wasn’t his fault, he was starving. As soon as Phil headed back to the OR Brewer and I went down to the cafeteria to get some breakfast. Brewer was fascinated, as always, to pick out whatever looked good. I think he got some sugar cereal, a doughnut, and I slipped a banana in there as well. The filter procedure wasn’t too long and with an hour and a half we were in post-op. Phil was determined to get the heck out of there and convinced the nurses to let him got right on the mandatory half hour mark. He was dressed and ready to go whether they liked it or not. After leaving the hospital we went to grab some lunch and realized we had a lot more time on our hands than we really wanted. Instead of hanging out in a car for a couple of hours we just went to Phil’s ortho appointment early. They got him in shortly, but by then he was worn out and in pain. The appointment was not great because of that. No x-rays were scheduled, but after Dr. Rothberg looked at Phil’s leg, he noticed the bulge on the inside of his left knee. He was a little concerned about it and ordered an x-ray right there to make sure it looked the same as last time. That meant we had to wait even longer. And to get the x-ray meant putting Phil in very uncomfortable and challenging positions. But he did it. At that appointment he also had all the stitches removed which was great, but painful. Overall, Dr. Rothberg was pleased with Phil’s healing. The adjustment to the screw had helped tremendously and the pain in his femur and knee was starting to feel a little better…maybe. The drive home wasn’t awesome for Phil, but I have to say that Brewer was a champ. He followed us around from one this to the next, hardly complaining and slept for a very long part of the drive home.

     It’s strange being in the driver seat and driving my family. That normally is not my job. Even if I wanted to drive, Phil usually says no. That’s his domain and I couldn’t be happier about that. But having him and the kids in the back has left me with a lot of time to think and reflect. Mostly that’s okay. But every now and then my thoughts drift to Brewer’s surgery, the new baby and how Phil’s recovery will continue to go. Those are the moments I can’t dwell in very long or I find myself feeling very overcome and overwhelmed by inadequacies and a feeling of unconquerable challenges. It’s difficult to think of facing those challenges without Phil by my side. I’m hopeful that he will be by my side, but there is a chance that it will be different than it has in the past. In those moments I can’t possible imagine getting through the year. I try to shake off those thoughts as quickly as they come, but at some point they’ll have to be dealt with. For now, it’s one day at a time. 

      After getting home the nausea hung on. For weeks Phil felt so sick and was so sick, never really throwing up food, but mostly bile. It was strange and the meds that he had, Zofran and Phenergan weren’t really working that well. Plus, he couldn’t live taking those meds forever. We had to get it figured out. He had to be able to feel good enough to eat so his body could repair, eat so he could have strength to do physical therapy, feel good enough to leave the house to get to the shop and help with his depression that was kicking in pretty good. Oh depression. This is something that I am not very good at dealing with myself. It’s miserable feeling depressed and it’s hard to know how to help someone who feels depressed. If it wasn’t one worry it was another with Phil. And most times all the worries piled up all at once and weighed so heavy on Phil. We had to get the nausea figured out. We made an appointment with GI and they squeezed us into the schedule on a Monday afternoon.

Post Update. Remember when I started this post saying things were still really hard? Well like three days after that, things started changing for the better around here...=) Here's the good news:

     The Friday before was like a miraculous turnaround. That was June 19^th.  I honestly still don’t know what the difference was. And the meds that the GI have prescribed seemed to have kept him in a better place. He thinks that because Phil’s gall bladder was removed that he may be suffering from some bile reflux. Hopefully it isn’t something that Phil will have to deal with his whole life. And hopefully when he’s upright a little more that will help the problem to resolve even more.

But since last Friday, just over a week now, things have changed for us. Don’t get me wrong. Every day is still a challenge and new difficulties and demands arise constantly, but it’s better. Since Phil has felt better he has been able to get out of the house more. We have spent almost every day at the shop for a couple hours and two days a week at physical therapy. Last week he stood up for the first time. It was incredible. The next day he stood up a little longer. Then he started to take steps with his left foot on a walked and then he ditched the walked and used crutches. Before it had been a full week had loaded himself in his truck and drove. The progress that we have been able to witness has been nothing short of miraculous. He’s in a lot of pain and his muscles are extremely sore. But at least that kind of pain is good right? It means that his muscles are working and growing. He has also been able to eat three meals a day. This is so important!

Our attitudes and the way we feel has felt different this week. It finally feels doable. We know that there is still so much in store for Phil and his recovery but seeing the progress and getting back to some normalcy feels so good. There have even been moments when I don’t feel like we’re just surviving. We’re living again. The attitude change that has come with it feels equally grand. Things will feel hard still, but at least we feel like we have turned the corner that we have so desperately prayed and hoped for. Just in time for Brewer’s surgery, right? Yikes. That’s a whole different blog post though. One that I’m not quite ready to talk about or write about. But at least Phil will get to do it with me now. That’s our goal and we still have three (a little less) more weeks for him to heal up and progress.