Update after Surgery

Over the last few days we have gone through a lot getting Davin home and trying to take care of him while he is still unable to walk very well and healing from surgery. We have been doing the catheters every morning and evening. We soon realized that three times a day is hard to fit in especially when Chad is at work and I can't do it all by myself. But the good news is that most of the time Davin doesn't have anything coming out, which means that he is emptying his bladder all by himself.

After about 10 days we stopped doing the catheter and the doctor said that he didn't need to be seen and that everything should be good. Yay!

The bad news is that Davin's foot is hurting a lot. We have given him some nerve medicine to help with the pain but it doesn't always work. When it starts to hurt he just screams and crys and we don't really know how to help him. The best thing we have found with the help of Grandma Cloward was to put a hot pad on it. That seems to help it feel better and he can get some relief until we can give him more med.

Another bad thing is that the med. for his foot is making him restless. He can't sleep and he is constantly moving. He can't hold still even for a few min. He also has twitches in his leg every once in a while that don't help him when he is trying to calm down and go to bed.

Davin got his brace for his foot and wore it for two days and then he noticed a huge blister on his ankle. We went to the doctor and they tested it to make sure it wasn't an infection from the hospital. The test came back negative so that was good and we decided it was from his brace rubbing on his ankle. The doctor told us not to wear the brace until it got better which took forever!

 

Davin also started physical therapy to help him learn how to walk with his hurt foot and help him get his muscle strength back from surgery. We go once a week and it has really helped him to get better at walking. We also ordered a new brace that is molded to his foot and not just a standard one. It is a lot nicer and Davin even got to choose the color and pattern on the velcro straps. Now the hard part is finding a shoe that will fit his brace. We finally found some shoes at Shoe Carnival and we bought him two sizes of shoe. One for his normal foot and the other for his brace. It is a little funny to look at them side by side but at least now he can wear his brace when we go out.

 

From the physical therapy we have learned that Davin can't push his foot down or side to side or lift it up. He can move his toes just slightly (you have to really watch for it) but that is it. We don't know if his nerve in his foot is damaged or just pinched or swollen from the surgery. The doctors told us that it might take 6 months to a year to see any improvement in his foot. Hopefully it won't be too long before we see somthing. :)

Coming home

Davin has had a hard time walking so they decided to have a physical therapist come visit him and see what they thought was wrong and what to do about it. Monday morning Stephanie came and played some games with him and had him walk a long ways to watch what he was doing while he was walking. His right foot is still really swollen and sore and he isn't able to move his ankle. She said that it looks like he will need to wear a brace until he gets movement back in his foot so that he stops tripping over it.

 

When we went down to fit his brace he was also able to be unhooked from his IV fluid. The nurse told him that he was doing a good job drinking his water and that if he continued drinking enough that she wouldn't have to hook up the tubes again. That was really exciting for Davin and he was able to go without his fluids the rest of the time we were at the hospital.

 

We were able to go down to the playroom and Davin had a ton of fun. He painted a few wooden cars and dinos and he got to play with doctor stuff. He also crawled around on the floor and made picnics for us to eat. It was really nice to watch him play after all the days of him just sitting in bed.

 

 

 A lady from music therapy also came and hung out with Davin for a while. She was really nice and Davin had a lot of fun playing all of the drums and shaking the instraments. He was even able to play the guitar a little bit with a big pick. It was also fun because she asked Davin what his favorite song was and he told her it was Josh Groban You Raise Me Up. It took a min to think of the words but she played a little for him. 

 

 

Tuesday morning Chad came up to the hospital and was taught how to do the catheter and was surprised at how much easier it was then he was expecting. Davin doesn't like it but he is a brave little boy and understands that there are some things we have to do to help him get better. He also got to go down and play with Stephanie again and they did some fun things. They built towers with cardboard boxes and swung on a big swing and knocked them over. Davin's favorite part was building the towers and it was hard to talk him into doing other things.

 

I think Davin's favorite part of the stay at the hospital was playing plants vs zombies with his dad. That was one of the biggest motivators in getting him out of bed and walking a little bit. Davin liked sitting next to Chad and watched as he completed all the levels. I think they even beat the whole game while they were there.

 

In the middle of the day we got the ok from the surgeon that we could go home if we felt comfortable taking care of Davin at home. Chad and I were really excited about this and did all we could to get out of there. We were all packed and ready to leave and just waiting on the nurses when it looked like we weren't going to be able to go. We were really mad and assured the nurses that we had done everything that we needed to do and that everyone had said we could go. They finally figured it all out and we finished all the paperwork and were able to leave.

On the way home we met Grandpa Cloward, Tyson and Holly at the fish store. Grandpa, Tyson, and Dallin had worked all weekend on a surprise for Davin. Grandpa found someone who had a saltwater fish tank setup that they were getting rid of. It was a lot of hard work cleaning it up but they worked hard and set it up in our front room for Davin. When we got to the fish store Grandpa told Davin that he needed help picking out a new fish to put in his fish tank. Little did Davin know that this fish was actually going to stay at his house in his new tank. When we got home Chad brought Davin in the front door and showed him the tank. He had fun looking at it and watching Grandpa and Daddy put the fish in.

 

When we got home we have a very excited little brother. Liam had been waiting for his brother and was so excited. He was bouncing all over the place and running around. He loves his brother so much and had missed Davin so much. He was very concerned about Davin and helped take care of him anyway he could. Liam grabbed blankets and toys for Davin and did it all with a huge smile on his face. We were all very excited to be home and together!

The weekend

Over the weekend Davin had a lot of changes. He started to be awake more, which meant that the nurses wanted him to get up and walk more. He really didn't like getting up and moving and still wasn't wearing anything but the hospital gown top. He still had his cathater and didn't feel like getting dressed at all. Chad was the one who got Davin to move the most. I don't know how he did it but he would talk to him and motivate him to move when no one else could get him to do anything. He had a hard time walking and wasn't putting much weight on one of his legs. We ended up getting an ultrasound of his leg to make sure there weren't any blood clots and drainage in his hip that would make it hard for him to walk.

 

Davin's tummy also started to get really distended and he had a lot of gas build up after the surgery which wasn't going away very well because he wasn't moving very much. So after they had given him the ok to eat whatever he wanted on friday night the surgical team decided to put him back on the no liquid no food diet again. He didn't have much of an appetite so it wasn't that big of a deal for him but it is hard not to be able to give him a drink of water when he wants one.

 

On Friday Liam was able to come up to the hospital to see his brother for the first time. He was really happy to see Davin and loved running around the hospital looking at all the fish on the walls and floors and riding in the cars. He even got to eat some mac and cheese in the cafe while he was there. He also got to come up on Sunday when Davin was feeling a little better and moving around more. The boys both got cars and we went for walks up and down the halls and they even went outside on the balcony for a little bit. The boys loved being able to play with each other for a little and Davin ended up being really tired after all of his visitors left and slept most of the evening. 

 

 

On Sunday Davin was able to accomplish a lot of goals. They were able to remove his cathater and he was able to go potty by himself. Because of the enlarged bladder they did ultrasounds of his bladder after he would go to see how well he was emptying it. The first time they did it he had emptied everything and we were really hopefull that he wouldn't have any problems with his bladder. The next few times weren't as good and the urologist was thinking that we were going to have to give Davin a cathater at home three times a day to make sure he was emptying all the way. If he was emptying then we could start dropping it down to two times a day and then one. And hopefully his bladder would just return to the normal size and work how it should.

 

Davin was starting to move a lot more and was acting a lot better and we are hoping that we will be able to go home Tuesday or Wednesday. Yay!

The day after the surgery

The next few day after the surgery we had a lot of people come to visit Davin. One of the first people to stop by was our home health nurse Cheryl. She is really nice and Davin really likes her. She is really good with him and he has gotten really comfortable with her accessing his port and he even helps her put the blood in the tube and mix it up and down. Davin always plays games with Cheryl and hides in his forts that he builds in the front room so when she came to see him he couldn't go hide so he decided to pretend to be asleep. Silly kid!

 

The next visitor we had was Dr. Bean. She was really nice and brought both the boys books. She always gives out book at their well check up and so she said she had to run and get books for the boys that morning. She didn't get to see Davin awake at all but said that he was looking good. Davin slept most of the day and was only awake for a little while. Grandparents and Tyson and Holly came to see him but again he was asleep for most of it.

Chad and I were able to talk to the oncologists today about the tumor a little more and find out answers to more of our questions. We are still worried about the part that is still there and wanted to make sure it wasn't going to be a problem. There are still cases that are abnormal and weird but they said they don't think it will spread anywhere else in the body. It is what it is and it isn't going to go from being benign to cancerous or a different type of cancer. They said it is mostly benign so it really shouldn't grow very fast if it grows at all. So they are expecting it to stay around the same size and Davin will have it at the bottom of his spine for the rest of his life. We will get the full pathology reports in a few days but they really aren't expecting it to be any different then the biopsy.

Davin doesn't like to move much and is sleeping most of the day but the nurses still want him to try and move as much as possible. We don't want him to get pnemonia or anything. He sat up a few times and sat at the edge of the bed but didn't do much. They started him on a liquid diet in the afternoon and soon moved it to a solid diet but he didn't really feel like eating much. He had lots of water and a bite or two of pudding but that was it. He even took some med. oraly which is good so that we can get him off the morphine drip.

The Surgery

The morning of the surgery was a little stressful. I thought that I had done a good job packing and getting everything ready so that we didn't have much to do in the morning but I was wrong. There are always last min. changes and the last min. things that need to be packed like all of Davin's blankets and stuffed animals and that just takes a while. We needed to be at the hospital early that morning and were running late packing everything into the car and making sure Grandma and Grandpa had all the instructions for Liam. When we finally left we only had 30 min to get there on time. Well, most of the time it takes 45-60 min to get up to the hospital but because we were driving with everyone who was going to work it took a little longer (90min). I was stressed because we were an hour late. We got checked in and they rushed us through preop because he was suppose to go back for surgery in 5 min.

We got back to the waiting room and sat down. This is Davin's favorite part because the tradition is to build a lego while we wait for the doctor. We didn't have much time so we told Davin we wouldn't be able to finish it all but we could start and finish later after he felt up to it when he was done with his nap. As we were doing the lego the nurses informed us that the operation in the operating room we were suppose to go in was taking longer than they thought and it would be another hour before they would be able to take us back there. Luckily we have an awesome boy who doesn't need med. to calm down and he was just happy to sit and continue working on his lego. The original surgery was scheduled for 9:30 and Davin ended up going back just after 11.

The surgery went exactly as planned. It took 4 hours, and Davin's incision is from hip to hip. The doctor said he had to cut the tumor in half to get it out. Because the tumor was so big and was where it was Davin lost enough blood that they ended up giving him two transfusions during the surgery. The doctor was really happy about how everything went but then informed us that his bladder was enlarged probably from not emptying all the way because it was so stretched and had so much pressure on it from the tumor. We were going to watch it but they were going to have a urologist come look at Davin and tell us what we needed to do to make sure his bladder would work correctly and hopefully make sure it wasn't because of a nerve.

When I went back to be with Davin after he was awake he was just really calm and mostly sleeping. The nurse thought it was really cute and kept saying what a good boy he was. The little boy next to us wasn't happy at all. He was screaming and crying and yelling at all the nurses trying to help him and trying to pull out his iv's and stuff. When the nurse called up to talk to the nurse at the room we were going to be staying at she told her not to worry that the noise wasn't from Davin and that she was getting a really good boy. :)

 

After the surgery Davin slept a lot. He couldn't eat or drink anything and we just had little swabs that we could get wet and rub around his mouth when he wanted something. They set up a morphine drip to control the pain and he even had a button that the nurse could push to give him an extra dose if he was in lots of pain. That night I came home to put Liam to bed, and Chad stayed up with Davin. Chad and I traded off nights at the hospital and at home. We wanted to both be able to see both of the boys and figured it was easier for Liam to have one of his parents home with him at night then to have him spending nights at different grandparents houses. It was a long day but it was all over, and now we just have to get better.

MRI Results

After the MRI we went up to Primary Childrens to get the results and figure out what the next step in Davin's treatment was going to be. Davin slept the whole way up there and was sleepy when we got there. Once we were in our room he started to wake up more and he was acting really grumpy and saying that his throat hurt. He kept getting meaner and meaner until he stood up and said he was going to throw up. He did in the garbage and then sat back down. After he felt a little better but through the whole visit he was really sick. He ended up throwing up 3 times. At the end of the visit the Oncologist felt really bad for him and said something about it and I told her that he never throws up. After all three he has thrown up a total of 5 times in his life. It was really sad to see him so sick. While we were there they gave him some more nausea med and that finally made him start to feel better.

And back to the results. It took a while to get them, we had to wait while the radiologist was finishing doing the report. We talked with one Dr. and she told us that it looked like the tumor hadn't shrunk very much and so they were probably going to just take it out but the surgeon was still looking at it and then would let us know. The surgeon actually came up to the room a few min. later and our other oncologist Dr. came in and they both talked with us. They told us that they didn't have the exact measurements but the tumor shrank about a cm. in one direction, which wasn't very much at all. So the chemo wasn't doing what it needed to so there wasn't any reason to keep doing it. The next step was to take out the tumor. The only problem is that it is still wrapped around the base of his spine. The surgeon told us that he would go in and take as much of the tumor out without getting too close to the spine. He said that doing a surgery around that area was often more damaging that what the tumor might do. So we will take out most of the tumor and then watch the stuff around his spine. Davin will end up having MRIs every few months to see if it is growing and how fast it is growing. If it is affecting Davin in any way we will reevaluate and see if he needs more chemo, radiation or if we need to do another surgery to get the rest out. The oncologist thought that any of those other treatments were not very likely. She said that most of the time because the tumor is mostly benign that it wouldn't be growing very fast and wouldn't cause him any problems and that he will probably grow up always having it around his spine.

So in the end Chad and I thought it was good and bad news at the same time. We both were really just ready to be done, and not have to worry about it anymore. And in a way we kind of are, but there is always the chance that we will have to do something else in the future. The surgery is scheduled for Wed. and he will end up being in the hospital for 5-7 days. Davin goes back and forth between being excited to get the city out and being scared. He keeps telling me that he wants to watch the doctor take it out, but Chad and I have told him that he will go in and take another nap and he won't feel anything and just wake up with a sore tummy. He seems to be ok with that and hopefully he will be a perfect little boy again.

MRI

On Friday morning I took Davin to Riverton Hospital to do another MRI. I love going there because they only have one patient at a time and you have a lot more one on one with the nurses. One of Davin's nurses was going to be in charge of giving him his medicine and watching him while the scan was going came in to access his port. They had asked if he was good when his port was accessed and I said yes because he is always a good boy for Cheryl our home health nurse. She came in and said "I have never accessed a port on a real person before. Do you mind if I do it or do you want her (she points to a nurse standing next to her) to do it. She has done a lot of them and is comfortable doing them." I knew Davin was a really good boy so I told her she could do it for him. She said "great" but I could tell she was a little nervous. She got all the supplies ready and started doing it. Davin was a perfect little angel and kind of walked her through the process while she was doing it. She did a great job and I think it is actually the nicest looking that he has had with all the dressings that they put on. Davin was great and still doesn't like to be put to sleep. He always fights it so much and they have to use a lot of med. The scan was long (about 1.5 hours)  and then the same nurse brought him to the recovery room. He took a while to wake up and I got to talk to the nurse for a little while. She was a very interesting lady. She has done a lot of things in her career. She graduated when they still had the white uniforms and nursing hats, so she has been doing this for a long time. She also said that she also got to be a life flight nurse for 30 years. Davin woke up and was great. He got to eat a little bit of a popsicle and oreos before we left to go get Daddy to go up to Primarys and talk with the Oncologists. It was just funny to me to think that the nurse that had done so much and made life and death decisions was the same nurse that was so timid doing the port access. It was fun to see her be able to find out it isn't that bad. :)