Gone Fishin' and Signing Off

At a follow-up visit, Andrew had the pic line removed from his arm. As the doc went to remove it, it wouldn't come out. The doctor's eyes got big and he said "this isn't good". Finally, he got it out. He looked at us as said "I'm going to have to have you go get an x-ray to make sure nothing broke off and stayed in the vein. As we waited in radiology, I leaned over to Randall and said, "it figures, Just as we are crossing the finish line, someone says 'not so fast!!' It all turned out fine. But it did give Andrew's doctor a good scare! So where do we go from here? Andrew has to be very careful through October. His nerve pain has been bad since the surgery. It should calm down as we get the meds built back up in his system. He got the go-ahead to swim so that made him happy. We took him up to camperworld at Echo. We all watched him get into the pool. It was a very happy moment. Andrew draws questions from other swimmers when they see his amazing scars. It is something that he will have to deal with for the rest of his life. That next morning, after sleeping in a tent, he went fishing. He grabbed his pole, didn't have shoes or a shirt on, and headed to the river. It was good for him just to be free to do want he enjoys. Andrew is our own version of "Huckleberry Finn". Life is good and summer is the best time of all! Andrew starts high school soon and is ready to move on with his life. So this is the last blog of an amazing journey. Thanks for sharing your comments, faith and prayers for Andrew. This has changed our lives in many ways. One way being that I never by-pass others in need. We were out on Saturday and noticed a medical fundraiser at the high school for a child with cancer. We had to stop and contribute. You can't imagine what it means to be in a position of spiraling hospital bills. You hope you never have to face it. But we have. So now, we feel compelled to pay-it-forward. I also look at life differently. I just don't get worked up about things that I used to. A lot of stuff that we worry about is truly 'small' in the grand scheme of things. Love your family, spend time with them, and live like each day is your last.

Recouperating from Major Surgery?

Most people who go through a major bowel resection and abdomenal wall closure surgery enjoy lounging about for several weeks, recouperating. Not Andrew. Day One. We arrive home, Andrew goes over to the Barkers acrossed the street. OK. He'll play computer stuff. A little later on, I send Amanda over with a popsicle. She comes home to tell me that he isn't there. What!!! He went with the boys to watch them do a service project in the neighborhood. Later on he tells me that he wants to go to Farmington Pond. No!! I realize that for the next six weeks I am going to have to keep a close watch on him. Day Two. I make Andrew come with the family to Farmington Pool. He can't do anything but sunbathe and hang his feet in the pool. Day Three. We took a ride up to Westgate in Park City. Grandma and Grandpa are staying there. Once again, Andrew gets to sunbathe. It is hard for him to watch from the sidelines. But we are in the home-stretch now and have to be careful. Recovery time will be six weeks - very careful and three months - careful. Over the weekend we had the annual Spilker Family Reunion at Westgate. We spent one day at Trial Lake fishing. Andrew caught a a 17", 1 pound albino trout. We had a lot of fun with Grandma and Grandpa Spilker! Later in the weekend, I was walking out to the pool and turned my head in time to see Andrew swing a tennis racket. He was trying to play with his cousins! Eek!! My blond hair is rapidly turning white. Hmm, I wonder why? Andrew's pain levels are mostly manageable. His back/leg nerve pain reared it's head again. He was off those meds for 10 days during the surgery. So now we know that they really do help. Andrew has some muscle spasms in his abdomen that hurt but he is doing very well! Just a little tylenol for pain. I have to smile when I watch him do things that he enjoys, like fishing. To see the twinkle in his eyes is such a gift! Each new day that you get to spend with a loved one, is precious. That is one of the lessons we have learned. On Wednesday, Andrew's JP drainage tube came out by itself. He said, "Mom! I swear I didn't pull it out! John is my witness." I had to laugh. It was ok and can stay out now. We are down to the PIC line and tpn. We go in on Tuesday and I think we may be good to end that too. We can see the finish line! It has been a long race.

One more day

False alarm. We will be going home on monday. Andrew's surgeon was out for a bike ride saturday night and stopped by to see him. We decided to keep Andrew on tpn for a while.
Tpn helps him to maintain or gain weight while he is recovering. This added another night to our hospital stay. His surgeon is a very caring, awesome doctor! If we can get Andrew to wake up this morning, we will all go to church here at the hospital.

Tomorrow is the Day

It has been quite a week. Andrew has progressed nicely through the recovery process. It is painful to have a large abdomenal surgery as he did. Thursday was a difficult day with a lot of nausea. However, on friday, things moved foward as his insides finally started working. He took a long walk. They allowed him to pulled out his own NG tube and begin drinking. Aaron, John and Matt, Kortny and Sabree had a movie night with Andrew. Saturday he was able to begin eating food. We had Randall's aunt's funeral in the morning. When we arrived saturday night, Andrew was off of everything but he was having pain. He has lost some weight and will have to regain the weight. It looks like we will be going home on sunday! It will take time to feel good eating again. His stomach has shrunk down and nausea is a problem. It has been wonderful to receive all of the well wishes for Andrew that he has received from the staff. Andrew's success is this hospital's success!

Saturday, 3rd of July

This morning we all woke up feeling a bit tired!! Concern sure takes a lot out of a person. Today Andrew had a few visitors: Family, Sabree, John and Matt, Mike, Rick, Connor and Katrina. We think his pain med is up a bit high because he just wants to sleep all the time. It is nice when visitors arrive at a meal time. It allows us to sneak down to the cafeteria to grab a bite to eat while they visit Andrew. Later in the evening, the hospital asked us to move rooms. We negotiated a better price...just kidding. We ended up with a room that is a lot bigger and nicer. We twisted Andrew's arm and got him to sit up for the first time and get into a wheel chair. I couldn't help but think of women who have c-sections. This is worse. But Andrew made it in the chair using the 'hug the pillow to your stomach' technique. He sat in the chair for over a half hour before we got him back into bed. Tonight, I feel grateful to have Andrew with us. As you get around the hospital, you find yourself witness to families dealing with sudden trauma and tragedy. It pulls on your heart in a profound way.

Is It Time Yet?

Friday we left home at 7:45 a.m. to reach the hospital by 8:45. Just as we were reaching Salt Lake City, the phone rang. There was an emergency surgery that bumped us. We were to report at 10:15 for a 12:15 surgery. OK. We decided to go rest at Ashley's home in North Salt Lake until it was time to go. We enjoyed seeing our sweet grandson. At 10:00, we arrived at the hospital and checked in. They moved us to the surgery prep area. We waited and waited. Keep in mind that it is Friday at noon and Andrew hasn't eaten anything since Wed. night. Next thing we know, they bump us again but this time with no idea when the surgery will actually be. We couldn't believe it. I was not a happy camper. I decided to go eat something so that I could regroup. Andrew wanted to continue to wait. He just wanted to get it over with. They put him on an iv to help with his starved condition. We watched tv and waited. Finally, they took Andrew back for surgery at 4:00. They wanted to place an epideral but it ended up in a failed effort. The surgery was very long. It went 4 hours. It is very hard to do nothing but wait. I fell asleep in a chair by the window. Finally, we got a call that they were 45 min out from completion. They said that things were going good. When the surgeon came out, he had very good news. They had to do two different surgeries; a bowel reconnection, and an abdomenal reconnection. The surgeon was very pleased with how the first goal was reached. It took four hand because they had to work through some scar tissue. It took a lot of time but, things went together well. Second, the abdomen went together completely. They needed a little more slack at one spot, so they opened a side spot wider to gain a little more give to it. Then they sutured dermamatrics to the new wound site. Randall went back with Andrew in recovery. Andrew woke up with a muscle spasm that was very painful. The pain team took care of things quickly so that we could check into his room. Andrew slept well for several hours until he had an itching response to the pain meds. Once they resolved that he was able to rest again. Andrew has a implant that carries pain med locally to his wound site. He also has an on-demand pain med system. There is also a drain for his wound. It is fascinating what medicine and creative medical engineers have come up with to increase post-op comfort! We were exhausted by the end of the day but so happy with the outcome of the surgery!! Andrew was in a good, positive mood.

Back flip at barkers (MAY)
Boondocks fun April
Presidents day
Natural history Musuem

Andrew going to school for the first time. In April.
Physical therapy.
Ice Fishing, February
Antelope Island in march
Owl

Facing the Next Hurdle

Yesterday we had a final pre-surgery appointment at PCMC. The surgeon gave us a good idea of the challenges that may or maynot be present. They will reconnect Andrew's bowel. Due to the distance between the ostomy and the fistula, it will be challenging. Placement is key if it is to work properly. Because his liver placement changed with the accident, they are not sure where the intestines and stuff will be situated. To complicate things more, there could be a lot of scar tissue to work through. They will also close the abdomen in a permanent, sturdy way. The opening is very close to the ostomy. The surgery will take around four hours. Because of his past experiences they will be prepared to give him blood products, if necessary, and will be taking preventive measures against blood embolisms. The hospital staff continues to ooh and ahh over Andrew. He is a rock star at PCMC. The surgeon indicated that the staff is aware that he is coming in and that they are excited to move forward on this part of his recovery. Many of the trauma surgeons worked on Andrew at some point. He said that they will be looking in on this whether they operate or not! Very exciting! After Andrew completed his summer school boot camp, he went to scout camp last week. He had a great time at Camp Browning. He rapelled a 200ft. rock, took the polar bear challenge (icy water), shot a gun, and did an aerial obstacle course. The obstacle course was the hardest for him due to his weakened core. But he did it. Rick McGurk was his awesome, group leader. Although Randall and I knew he'd be fine, we felt sick for a bit as we dropped him off to camp. We are very invested in this kid. Last week he also went four-wheeling with the Barker boys. He didn't really have permission but I guess we will forgive him. Andrew loves to be active!! After our appointment yesterday, we decided to visit our friends at the PICU. They hadn't seen him for quite some time. He has a nice tan and his hair has grown out. He has added a good amount of muscle mass to his body. They took us around for everyone to see him. We ended up outside a patient's room. I don't think that it was a coincidence that we brought Andrew in that day. There was a teen girl on ECMO. I didn't realize it at the time but Andrew noticed immediately. I talked to her mom and gave her a hug and words of encouragement. She was so grateful to see Andrew. It gave her great hope that he looks so good! We were also told that the hospital did a big write-up on Andrew. He is the only patient to ever survive ECMO with an open abdomenal wound. Apparently they didn't expect his body to be able to contain the circulated blood. So he is a ground breaker for this amazing, life-saving option. As we left the PICU, I noticed that my hands were trembling. Even having gone through everything that we have, there is something raw and tender about an ICU. Life hangs in the balance there for the patients and their loved ones. ...but for the grace of God, there go I... . Andrew was asked to speak in church about his experiences. It was difficult for him but he made it through the talk. Andrew had a great number of responses to his talk. His experience continues to open people's hearts to God because Andrew's life is a medical miracle. When you realize what Andrew has gone through, you cannot deny a divine power involved in his recovery. Andrew's surgeon talked to us about needing divine help in our every day lives. I have prayed unceasingly for Andrew and his surgeon. As this next hurdle comes before us on friday, I had a moment the other day of feeling weak and unprepared. I had a restless night. When I woke up, I had the distinct thought that Andrew is the most courageous person that I know. I realized that he has been tested and proven. Andrew meets life head-on with faith. He doesn't whine and feel sorry for himself. It occured to me, that I could give no less back in what I do. We are now prepared for this challenge. We approach it with optimism and faith.

Feeling Good About Life

Andrew will have surgery some time in July. They will reconnect his bowel and close his abdomen completely. If all goes well, it will be a 7-10 day stay at the hospital. It will be, at least, a month recovery. He will need to be careful until October. It is our hope that this is the last surgery that he will need. Andrew has been doing great. He is hardly home. He likes to hang out with his friends. He got his learner's permit for driving. Andrew volunteered at an mock emergency for Ariel's EMT class. They covered him in fake blood and made up his wounds. Then they set up a triage and diagnosised and prepped the patients for transport. They gave Andrew a fake tracheostomy and strapped him to the board for transport. Andrew loved it. He wants to do his EMT while at Davis High. Andrew has enjoyed his physictal therapy. His muscle mass and strength is greatly improved. He did a back full on the trampoline and his ostomy bag went flying off. I see miracles in all that Andrew does i.e., mowing the lawn, checking out a book at the library, passing the sacrament at church, helping a neighbor. Andrew feels optimistic about his future and is happy to be alive. He is working on making up school credits. That isn't fun but we are moving forward. This summer, Andrew is planning to go down the green river, rock rapelling boating and lots of fishing. A friend at the saloon who lost a baby shared this thought with me- If you live in the grief of yesterday, you cannot feel the blessings of today! I believe in looking for peace and happiness and filling your life with hope and love.

First day of School

Andrew started school on Tuesday. He has four classes a day. He is doing great. I think that he enjoyed getting back into school and into his regular life. That morning I had calls from everyone in the family. Every time my phone rang, I worried that it was Andrew calling. But he never did. We all survived the first day just fine! Andrew was worried about getting stupid questions about his accident. The kids at school were cool about things and he had a great day! YEA!

Just Plugging Along

Last week we spent the day at PCMC and U of U for several doc appointments. Andrew continues to move forward in his recovery. He is off the tpn and if he can maintain his weight, they will pull the pic line. He is down on the meds that he takes, so life is good. We are encountering two conflicting opinions regarding what sports he should participate in. His main physician believes that he should be happy to be alive and not participate in contact activities. His nephrologist believes that he should "go for it". He doesn't believe in having him sit on the sideline of life. I am beginning to believe that it will eventually be up to Andrew. Andrew really enjoys going to physical therapy. He gets stronger all of the time. Last week there were several young girls at PT. One was a cheerleader who had pulled some muscles doing the splits. She really enjoyed watching Andrew lift. I tried to keep from laughing. I told him afterwards, "you've still got it!" Andrew also becomes more active each week. We are working towards getting him into a couple of classes the last term. Home school is difficult. The work seems harder to him than normal school. He has a lot of work to make up so we keep him plugging along. As he strives to come to terms with this entire experience, he remains positive about life. It is a lot to take in. But he recognizes how fortunate he is. We remain thankful. Several months ago I tried to imagine where we would be in his recovery by March. I know that we are further along than I ever dreamed.

Wow! He can jump...a little

Last ten days have been so busy. First and most important, Andrew is done with the wound vac. It was an amazing moment. The nurse with wonund team was also the nurse who was with him in surgery the first day. We reflected on his journey. It is amazing. Andrew feel so free not to have the machine to pack around. The skin graft in the front is good enough that I stopped putting a dressing on it. The back wound is coming along. Andrew's continues to gain strength. Andrew went with his friends to the arcade. He even bowled. It is a concern whenever he goes out. People don't realize that he is still recovering even though he looks so good. One of the neighborhood boys slapped him on the back. I cringed when he told me. We can't keep him in a bubble, can we? Andrew goes to his weekly church activities. He played racket ball. It is the one night of the week that he can do things that the doctor probably woundn't approved of. The most difficult thing for Andrew right now is the nerve pain. He has had it from the start. Nights are the worst. We are not sleeping much. We have an apt. with the pain clinic in March. Hopefully, they will have some ideas about his pain. The pain is coming from the spine where he lost several transverse processes. It radiates up and down his leg and is excruciating. Not fun! Andrew is back to his starting weight. He has also gained a lot of muscle in his upper body. Two more steps forward. Yesterday, Andrew ran four steps. Then he showed me how high he can jump. Not very high but, impressive nonetheless! At PT he is lifting 60 pds with his legs instead of 20. Then they put him on the treadmill and turned it on to a pretty fast pace. I had to turn my head because it made me nervous to watch. But he continues to move forward. We stopped at the school to look into putting him into a couple of classes the last term. We are so grateful that we are to this point. Sometimes Andrew wonders about the future. I remind him that nothing is guaranteed in this life. If you work hard and have faith, the sky is the limit. He really enjoyed seeing Svindall from the Olympics. It you don't know, Svindall came back from a serious trauma (ski crash) and took the gold medal in the downhill. People with this kind of courage are very special and inspirational! Keeping up hope is so important in a recovery. When we feel discouraged we think about how far we have come. We also know that we can and will conquer this!

Skin Graft is 50% Success

Andrew had a rough week. The skin graft didn't work as well as we would have liked. The graft slid out of place so they think that the surgery may be 50% successful. The doctor slid it back in place but only time will tell. It is a difficult road to be home all the time. You miss your friends and activities that you used to do. Andrew commented that he cannot wait to be able to run once again. The impact of the situation hits at different times for Andrew. It is not easy. Sometimes we all wonder if we are truly up to the challenges that have been placed before us. It is reassuring, however, to observe God's hand helping Andrew one step at a time. I am amazed at Andrew's strength to endure the multiple procedures that he must go through. Before his last surgery, he was calm and confident. I wasn't feeling that confident. I had to give him a big hug before they took him back. We have invested so much into this kid! We have all worked so hard to help him move forward. God's plan for Andrew unfolds a little each day. Andrew receives extra comfort and strength as needed. The other night as I was flushing his pic line, Andrew asked how come my hand was shaking so much. I had to remind him that I am not "nurse material". Last night when his line had an obstruction, I ended up calling the nurse. She had me flush a little saline and then pull back to see if blood would come in the syringe. This way we would know that it wasn't the pic line. It really grossed me out but I did it! The medical stuff is the hardest for me. Each week we really enjoy the home seminary teacher who comes to teach Andrew. Each week as they discuss the scriptures, there is a sweet spirit that attends them. This has been a humbling experience for the whole family. We try to work together. We try to be grateful. We try not to complain. We try to see our goal of a healthy, active Andrew.

Making Progress

Today was a long day. Andrew had surgery. They took skin from his thigh to graft on front and back of his abdomen. We arrived at 2:00 and didn't leave until after 8:00. The surgeon said things looked great. This is one more step in moving foward toward recovery. Andrew will have to take it easy this week. On friday, he may lose his wound vac. That will be great for him. The harvest sight looked really sore. He took a long time to wake up. But he is doing great. Andrew started computer school last week. He says that it is harder than real school. My new role is teacher added to that of nurse. I try to be mom with the time that I have left. Oh well, you have to work with what you've got! We work hard to help Andrew stay positive about life. We took him for a ride to Antelope Island on saturday. We saw a coyote, porcupine, great horned owls and a herd of antelope. You have to be creative to keep a super-active person happy when they are sitting on the bench in the game of life. Andrew has never been one to sit and play computer games. He is all about movement!! The other day before he would touch his school work, I had to take him for a ride. Cabin fever is a constant threat. Andrew had to write an essay for school. He chose to write about the accident. It was interesting to read his perspective. He never feared for his life but was worried that he wouldn't walk. We have a lot to ponder. Why was Andrew spared? I have always noticed that Andrew has a kind soul. We were at physical therapy the other day. When it was over, Andrew held the door for an elderly patient who was on oxygen and just arriving. I had walked past him with my mind on other things. Andrew was undoubtedly exhausted from the workout. But he stopped for a moment to help another human being. It made me remember one day when he was around two years old. I had finished a snack and held the plate in my hand. Before I had a chance to take it to the sink, Andrew took it from me and set it in the kitchen. I called him my "little gentleman".

A Big Week for Andrew

This has been a big week for Andrew. First, he will have his skin grafts done on the first of Feb. We spend a lot of time at different doc apts. Dr. Downey, his surgeon, was very pleased with his progress. Andrew has gained weight thanks to the pic line and tpn. He commented that this is the first big medical progress that he has made since the hospital. Andrew moves forward all of the time. Andrew went to a scout activity. They played pool at a neighbor's house. When he left, it felt like the first day of school for me. He walked out of the house with Connor and Gavin. I watched him walk down the street with them. He had a great time. The next night, he went over to Connor's house. Mike took them out to get a pizza. Then Andrew started his outpatient physical therapy. I found a great PT, Kurt Leske at Mountainland PT in Layton. He evaluated Andrew's strength. He was surprised at how strong he still is. He gave him a workout. I was amazed as I watched his determination. He really wants to get his muscles back. Andrew will go three times a week. Andrew really enjoyed it but he took a big nap afterwards! Have you ever received a bill for $824,000? We did on friday. It was for just the hospital's portion. We now have about four inches of bills for Andrew. We believe he will be worth around 1.5 million. It was interesting to look at the charges. Andrew received $8,000 dollars worth of blood/blood products the first day! It cost about $6,000/day just to be in the PICU. It get's complicated. You have to be careful to use insurance-contracted docs. When a trauma happens, you lose control of these decisions because things are happening so rapidly. The doctors make the decisions. But this week we have been referred to a GI doc and I have to make sure that he is contracted! This will lower our out of pocket expenses. We also have a prescription for Andrew that the insurance won't cover. It is going to be about $600 @ $7/pill. You hear these stories, but when you are in the boat it is quite amazing! Overall, we stay busy and we solve our issues one day at a time. Today, Andrew is going with the young men to the temple. He can participate in the confirmation part. It is amazing! We were driving along one afternoon and I looked over at him. I felt very grateful to still have him in my life. I said, "Andrew, I am so glad that you are still alive!" He smiled. A strange thing to say, yet true!

New Year, New Possibilities

Andrew has been home over a month and we feel grateful that we haven't done anything wrong in his care. It is complicated taking care of someone who has been through a trauma. Lately, Andrew was put on a pic line and tpn. They put him under for this and a wound vac change. This is an iv that he can be on during the night for 12 h0urs. The doctor decided that this would help him get 3,000 calories a day. It seems to be working because he has gained three pounds. For my part, it is a little scary. The pic line goes to the heart. You must keep things sterile. So every night we hook him up. It is a bit of a family affair. We do it before family prayer. The other night we had problems with the machine and air bubbles. The whole family was in on solving the problem. I looked at the faces of each of my children as they hovered over Andrew. I really appreciated how much they care about their brother. I suppose that we have done something right! They really love each other. In the morning, I guess I got up too quickly. I went to disconnect him from the line. I have to flush the line with saline and shoot some heparin into it. I sat down and began the procedure. I felt all the blood leave my head. Andrew told me that I looked weird. I was about to pass out. Luckily, Randall hadn't left for work yet. I ended up going to bed for a nap with Andrew napping too. While we were asleep the wonderful ladies, came and cleaned my house. (Leslie Clark, Julie Simmons and Karen Greenwell). I woke up to things in order. I can't tell you the relief that I felt. They are angels of mercy. I really need and appreciate the help. So things are progressing. The plastic surgeon is getting ready to skin graft Andrew's front and back. He will be able to sucture some of it. Andrew will have a five day stay at PCMC for this procedure. I also notice that I am running the "Andrew" business. Each day I have calls to make, appointments to schedule, supplies to order, and prescriptions to pick up. I had no idea that it would entail so much. You know when you see someone use a handicap parking spot and they walk out of their car just fine. You might feel a little annoyed. Now I understand why you don't need to feel annoyed. Caring for someone really takes time, effort, money and energy. I am so grateful to have the option to park in a handicap spot. I am so exhausted by the worry and all the work. It is a great help. The worry continues. Randall and I confessed to each other that we often check him when he's sleeping, so see if he's breathing. Just like a newborn. My knee decided to go out on me a couple weeks ago. It has been swollen, weak and very sore. We laugh because Andrew's walk has been stronger than mine. I think God wanted me to have some pain to help me be a little more understanding of Andrew. Andrew is doing well. Ariel and I took him to KJH to meet with Principal Stromberg, Mr. Brown and others. I have always thought KJH was an exceptional junior high. Now, I see how much they care about the kids. They are really interested in helping Andrew. There is a new program to do school on the computer. Andrew may be out the rest of the year so he can work from home. It is great because Andrew got a great computer screen for Christmas from the people at Randall's work and we went in on it. He also received a new processor from Prime Systems. Keith Duncan at Prime Systems is really great. We have been doing business there for years! Andrew can even lay in his bed and use his computer. This will be a big help for him to keep his school work going. Andrew enjoyed going to his locker and checking a book out. It felt weird to him to have people see him. He has lost a lot of weight. I know that people wish him well so he doesn't need to worry. Saturday, Andrew made it through Avatar, the never-ending movie. He really enjoyed it. I thought it was a little long! I look at the year ahead of us and hope and pray for things to go well for Andrew. It is my wish that he will be put back together so that he can start his sophmore year at Davis. Last night when I was up most of the night with him, I prayed for his continued healing. Andrew is a great kid and a big fighter.