Julian just turned eight and there are big changes…

There has been so much going on that I had forgotten to update this page. So to start at the beginning..

In October of 2013 we had a visit with our Orthopedic surgeon Dr. Michael Schmitz. It was the dreaded appointment.  Julian had been having problems for awhile. His back, feet and legs were hurting almost constantly. The wear and tear on his shoes was extraordinary. He had a lift on his right leg and it would drag when he walked. It got to the point where it was really heavy and the lift couldn’t go any higher because then it wouldn’t be stable enough for him to continue walking. Dr. Schmitz said it was time. We needed to decide if we were going to amputate now or later. There was no rush at this point but Julian was just getting top heavy. His lower body just couldn’t handle the weight any longer. (The kid is built like a small planet. His upper body strength is amazing.)

It took a lot of prayer to confirm that it was definitely time to do with the amputation. We had thought that maybe lengthening would be good in our case but that would just be lengthening his femurs but wouldn’t allow his lower half to handle the weight of his upper half. He needed something that would allow him to grow up and still give him the strength and stability needed to handle his weight. So we decided on having both of his feet amputated. It is called the Symes amputation. It is the amputation of the feet through the ankle. He has his tibia but no longer has any of the bones that would be his feet. The doctor kept the heel pad which would wrap up to be attached to the front of the leg. It gives him the ability to walk on his legs like stilts and still have tough skin and muscle to be able to do so.

The surgery was scheduled for January 7th of 2014.  We wanted to be prepared and we wanted to prepare Julian. We didn’t hide anything from him, we didn’t evade any questions that he had. We were very open and honest with him. But we have been like that from the very beginning. Never shielding him from what the doctors had to say to what might happen in his future. So Julian took this in his stride.  My husband and I were not quite to that point yet. There was a lot of grieving and still is sometimes. As an adult it is easier to see the long range consequences of these actions. I think kids don’t think that way. They roll with the punches and get up and keep going. We as adults have to think about everything and then worry about it all too. It is very tiring.

In preparation for the surgery I made sure that I had all the necessary things in place to keep Julian going with his education. I have to say the school that Julian attended was very helpful. He was able to have Homebound Study. That is where a teacher from the school will come to the house and work with the child to keep him on track. Ms. Diaz was fabulous to work with!

So the big say rolled around, I had my mom watching my oldest daughter because the day of the surgery was the day that school started again from Christmas break. My other daughter was with family so all my kids were taken care of. So of course, on the day of the surgery the temperature is 5 degrees outside. We had an arctic blast hit us that day and every time we had a follow up apt it was cold. The warmer nice weather were always on the weekends. Go figure.

The surgery was scheduled at Children’s Hospital of Atlanta/ Scottish Rite off of Meridan Mark Parkway in Atlanta. The staff was fabulous. We got there and was registered pretty quickly and in our pre-op room without any difficulties. Then it was the waiting for all the required staff to come and get the his medical history and anything else that they needed from us. Julian was nervous but you couldn’t really tell. He was completely wrapped up in his DS.  About 20 minutes before the surgery the nurse came in with a liquid that would help him relax. They told us that depending on the child he might get a little goofy. We were actually disappointed, Julian didn’t react that way at all. He was a bit more talkative than he had before but that would have been normal for him if he hadn’t been going through this. I think that tells you how nervous he was.  Then the next nurse came in, we said our loves and kisses and he was rolled off to surgery. I cried at that time. It was hard to watch him being wheeled away to have his feet taken from him. Despite crying I had to remind myself that not only is he a strong boy but that there are worse things in the world that just having no feet. That is a thought that I constantly keep in my mind as we go through these…challenges.

We waited for about four hours before we were able to see him again. The surgery itself took around three hours and then once it was over recovery was another hour. Dr. Schmitz came and told us that it all went well. Because of the deformity on his right foot that was the most difficult to complete. He was really glad of how it went. So while Julian was recovering we moved into the hospital room where we would be staying overnight. It was a tight and cramped room. And we had a lot of family visit that evening. I am so glad that we had a lot of family showing their support but on the other hand there were to many people in that tiny room. At one point I made everyone get out because the nurses needed room to check on Julian and do the things that they needed to do to care for him. Some were not happy about that. But you know what? Who cares. If you are in the way then I am going to tell you to get out of the way so that the nurses can do their job. That is just how it is.

We ended up only staying one night in the hospital. I thought that was kinda short myself. I figured that we would have been there at least two nights but Dr. Schmitz said it is easier to recover in a familiar environment and the hospital is full of sick people. I understand that! Dr. Schmitz had wrapped up Julian really well so that there were no changing of the bandages until we saw him again a week later.

Before we left the hospital the staff wanted to make sure that he was off the morphine and could handle eating regular food. Which was not a problem.  You know life is different in the hospital, where you are hooked up to the IV and have drugs at the call of a nurse. So much easier. But once you have left the hospital that is it. Not so easy. Definitely not as easy with Julian. His medication started wearing off on the way home. We were halfway home and he was crying because of the pain. We had to go to Wal-Mart to pick up the Lortab that would ease his pain. It was one hectic and tiring night for all of us. As we moved on through the week we ended up working on a four hour schedule of Lortab and Ibuprofen and Valium. The night is always harder to handle…but we didn’t know that there would be muscle spasms. The Valium helps to control that. He was in so much pain that weekend that I had to call the doctor on call and she sent in a script of Valium. That helped immensely. Thinking about it now it didn’t seem like such a long time, but while in the midst of it the time was forever and with very little sleep.

So for the two weeks after the surgery Julian was watching movies, TV and or playing is video games almost constantly. It was a great distraction for him when he was in pain and couldn’t take any more medication yet but when the he is trying to convince me that in order to ease his pain he should play video games is when I knew that he was getting better  we started to ease up on all the game playing. That was really hard. Julian is such a gamer. He loves his video games and I make sure to limit him so that he has other interests to occupy him. Thank fully he also loves to read.  Getting him to cut back after the surgery and after he started to feel better was the fight of a lifetime. I was so glad when he went back to school!

Sometime during the second week and third week of being home Ms. Diaz started to come over to help with his studying. I am so grateful to her that she was able to do that for Julian. I appreciate it to no end. Then the week following that he went back to school. YAY!!

It has been a wild ride and we are not done yet. His left foot has healed quite nicely. It looks really good and clean. We are hoping that we will be able to get his left leg cast and get the ball rolling for legs! His right foot however, is giving us problems. Some how he managed to get bacteria under his scab that was on his right foot. He didn’t have any of the normal signs of infection like fever, heat or redness around the wound but he did get a really stinky roadkill kind of smell. So Julian had to go back for a second surgery where Dr. Schmitz had to remove the scab that was doing so well in order to reach the bad flesh that was making a stink.  Unfortunately, that couldn’t have been done in the office because they needed to get under that scab and Julian would have had to be under for that to happen. So March 5th is when my husband noticed the smell. I contacted the Dr. office that evening and they contacted me the next day for me to see the Physicians Assistant Mr. Ed Wilson. We saw him on Thursday the 6th and Julian had the second surgery on the 7th. We were doing fine until last Thursday the 13th when the smell started again. We managed to get an appointment with Mr. Wilson for the 14th where he cleaned up the bad spot and I keep putting wet to dry dressings on the wound. Wet to dry is where you take gauze and get it wet with Saline solutions. Squeeze out the excess and place the wet gauze on and into the wound. Then wrap with clean gauze and then with ace bandages. They get changed out twice a day. I am not sure how it works but when you take off the dry dressing the gauze will pull off the yucky stuff that you are trying to clean up. It cleans out the wound that way. I am also told that now that the scab is off healing will be quicker than if the scab had stayed on. We wanted the scab to stay on so that the body could heal itself naturally, but when there is a smell coming from the wound it needs to be taken care of as soon as possible.

So that is where we are at the moment.




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