Sunday, September 27, 2009

This was a really hard week for our family. We keep saying that we cannot take any more. We said it almost 2 years ago, and year ago and now. Each time we think things would start to improve, we are hit with another smack up side the head.

My youngest daughter had been sent home almost every day for the last two weeks because of spine issues. She was having "electric shock" feelings, inability to walk as well as problems with her bladder and bowels. I can understand why the people at her school are anxious about these episodes. She came home one day in such pain that she was soaking wet from sweating. She was in a cool room, but her body was under such stress that she could not deal with the pain. We gave her some pain meds and she slept for 3 hours.

We took her to see the spine doctor. Before we could tell him what was going on with our daughter, he told us about how he had presented a paper about her surgery. He said that her x-ray was two stories high and her story surgery stopped the international convention because so many doctors had so many questions. Then he said that the moderator interrupted the questions saying, "99% of you do not have the skill to do this surgery on someone so young and the other 1% that do, do not have the b%##@ to do it."

So, with that said, we explained what was going on with our daughter. He said that nothing could be done. She will continue to deteriorate because developmentally she is in a stage of little physical growth. With the onset of puberty, things will get worse. She would continue to have episodes where she cannot walk and be incontinent. He told us to use the wheelchair and the back brace.

As you can imagine, this was a blow. We always knew that things would not be smooth in the future, but this hit us hard. We began to re-evaluate our outlook on how we spend our time. We go to all of these doctor appointment thinking that we would find relief of pain for the girls. What we are hearing now is that a pain free future is not possible. The doctors can help with the symptoms but because EDS is body wide, we need a multitude of experts to handle emergencies and other problems.

We do not dwell in despair with this realization because at the core is a hope that cannot be crushed. We have three wonderful children. We cannot thank God for giving us these precious gifts ant then curse Him because they were not our idea of “perfect.” While we do try to keep a healthy perspective on daily events, it is very difficult when there are so many big issues we are dealing with through our family. There are some days that appear hopeless and some are more positive. We laugh when we can and allow ourselves to cry and question from time to time.

On Friday we saw a new orthopedic doctor. He saw both girls and we all felt more comfortable with this doctor than the other. He spent a long time talking about how we came to realize that the girls had this condition and what went into the decision for the C1-C2 fusion. He agreed with all of the doctors that my youngest has a lot of scary symptoms and she is in pain daily, there is little to be done about it at this time.

Then he left the room for quite a while. I think he needed to get his head out of the youngest daughter's problems so that he could accurately evaluate the oldest. He focused all of the time on her recent injury. She had not been able to return to school since she left in an ambulance. It took us 6 days to get a wheelchair and he wants us to get a different one because it was not fitting her needs. He also wants her to stay in bed, in a vertical position all the time. He ordered a potty chair to eliminate movement. She has already sprained the other ankle from hopping on it.

He scheduled a test that would give a better picture of her hip. The x-ray showed that the hip was not broken, however, it does not show damage to tendons. He suspects that she has a tear in the the part of the hip that keeps the joint together. She will have dye injected into the hip, then have an MRI to show things better. She will have to undergo general anesthesia as this is a painful procedure.

All of this means, in practical terms, that she will be out of school for an extended amount of time. We had to move her bedroom downstairs. Because my husband will be in and out of town for the next 3 weeks, I will have to take care of her the best I can. I do have family coming in to help with appointments, but it will be hard. I cannot lift her, push her in her chair, transport he by car or pick her up if she falls. I also will have to leave her alone if I have to go up and take care of my other daughter.

I know that I know that things will work out in the end. Right now I just need a little glimpse of the unfailing love of our Creator.

Saturday, September 19, 2009

Impossible Dorctor's Orders

Both girls went back to school on Friday. My oldest daughter was walking around, but has some pain and my youngest went in her wheelchair because she still had back pain and could not feel her feet.

Anticipating come kind of call, I made sure that I had my cell phone close at hand. I took my grandma to the dentist, and while I was there, I made some calls to various doctors. The spine surgeon really wanted to see my youngest daughter, but knowing that we would get down there and there would probably be nothing to see on the x-ray, I told the doctor we would keep her resting as much as possible.

I figured that my oldest would visit the nurse at some point during the day. A call came before I went to physical therapy for myself. She was asking for Tylenol for the pain. I did not get the call, until it showed that I had missed the call because my cell phone did not ring. I called the nurse back and said that it was fine for her to take the medicine. She was only a couple of hours from coming home.

I went to my appointment and kept an eye on the cell phone to make sure that I would get any messages. Well, it did not ring again and it was the school nurse for my oldest daughter. She left me a message saying that my daughter's hip was dislocated and she was up in her classroom. I called back the same number and it was the assistant principal's phone. I told him to tell the nurse to call an ambulance if it was obviously out of place. My husband called a few minutes later and said the squad was on its way because they could see the dislocation even through her clothes.

I got there as quickly as I could and attempted to get to the room. The ambulance had beat me to the school. She was on the third floor and they were trying to figure out how to get her out. She would not fit in the elevator because of the stretcher.

Eventually they got her down using a collapsible stretcher. By this time, all of the kids were in the hallway because school had just ended. I felt so bad for her, but she handled it very well. She remained calm, even when adults around her were freaking out.

To make a long story short, her hip had gotten back into place on it own. The x-ray did not show a break. This time the doctor suggested bed rest and use of a wheelchair. The problem is of course that her bedroom is upstairs and she does not have a wheelchair. She is still in a lot of pain, no way to get around. The doctor's orders again, sound good, but we have no way to follow them. Right now we don't know how she is even going to bathe. We also have not idea how long she needs to be on bed rest.

I just keep looking around the house and wonder how we are going to make all of this happen. My husband is suppose to leave town on Monday and I have two kids that are having trouble moving around. I can't help any of them because I have not had a chance to heal myself.

Thursday, September 17, 2009

So How Was Your Day?

This latest adventure started last night. My mom was watching my two older children because the youngest had a doctor appointment. The plan was I was to pick up dinner then we would all meet at her house to help her clean a little. She has not been out of the hospital a month from her broken back surgery and she needed a little help. All of the kids were not happy about having to do work, but they finally quit griping and started to clean. Just as we were finishing I hear a faint cry of "Mom...Mom...Mom"

I quickly search for the source thinking that someone had broken item in the house. I find my oldest daughter on the floor crying and the vacuum still running. I learned that when cleaning the last room, she had tripped on the vacuum power cord and landed "funny" on her left leg. She said that she heard a pop and had extreme pain.

I quickly began to look at her hip. It did not look obviously out of place and she was getting blood to her toes, but I knew she was in agony. She was pointing to one particular spot in the hip joint. After talking it over, we decided to move her ourselves and take her home to see if things resolve naturally. None of us liked the idea of going to the emergency room at 8:00PM. She could not go up the stairs, so I stayed downstairs with her and we slept in the reclining chairs.

She cried most of the night so we knew that we had to have her seen by an orthopedic doctor as soon as possible. Well, we just got rid of the last ortho that said that he only wanted to see her if she needed surgery. We are due to see the new ortho next week and we will also see a doctor in sports medicine. (Yeah, with the addition of these doctors and two sleep doctors we are up to 23 doctors and therapist we see just for the girls.)

We got a hold of the geneticist and he called ahead to the ER and she was in a room very quickly. She had x-rays that showed no obvious break or dislocation. This time we got a ortho resident that was pretty good. He actually took the time to talk with my daughter and explain what he thought was causing pain. He said that she had either bruised the hip bones, or strained the groin muscle. This did not mean that it does not hurt. He said that this type of injury is common in football players and baseball players and they roll around on the ground in pain. Recovery will mean moderate rest, but she would have to move it.

Like her other hip injury, she did not want to move it. The ortho did not want to stay around to help us so he past us onto the attending doctor. The attending did not want to do it either and was upset to hear that I could not do it because of my recent neck fusion.

I asked the doctor to send it someone from Child Life that might be able to distract her in order to reduce her anxiety and therefore reduce her pain. Just a note, if you are ever in a children's hospital, ask for a Child Life worker. They specialize in explaining procedures to kids to reduce the anxiety and they are masters of distraction during painful episodes.

Anyway, Child Life did help a great deal. My daughter blew bubbles as I raised the head of her bed, thus getting her to the upright position. She was still in a lot of pain, but I could get her in the car. Praise God!

When I got home, I had to take a quick shower so I could go and see one of my doctors. Just as a finished getting dressed, we got a call from the elementary school because my youngest daughter had an electric shock through her body and her hands and feet were numb.

My husband and I quickly grabbed the back brace and headed to the school. We found out that this one was very scary for our daughter as well as her teacher. Put yourself in the teacher's shoes for a moment...she had a kid in her class that can dislocate just sitting in a chair or have a spinal injury.

We got her in the back brace and took her home. We had to drop her off in a hurry because we still had to go to my appointment. The scene at my house was my oldest in pain from the injury the night before. My youngest daughter in a back brace on high power pain killers, my son who had to try to concentrate on his homework in this zoo atmosphere and my mom, with the broken back taking care of them!

We did get out of the house to get to the neurologist. I had to go because I am having severe problems with my memory along with uncontrolled muscle movement, confusion, severe head aches and uncontrollable closing of one of my eyes.

The bottom line is that he thinks I might be stressed and in pain. Do you think? Really it took a brain surgeon to tell me this. When I tried to explain that those two symptoms are just a normal day, he said to come back when my pain was under control. I guess I will not be going back to soon as I cannot take pain medicine and I am in too much pain to sleep.

He did say that the problems that I had last winter were due to the bleeding into the brain they found before my C1-C2 fusion. I was surprised because I was led to believe that it was due to some of the medications that I was on at the time. But again, it takes a brain surgeon to tell me that I should not worry.

On the way out of the office, I told him that I would see him again next week, because my mom was coming in to try to figure out why she does not breathe after surgery. The doctors are concern because they think that her problems are due to problems in her brain stem. Meanwhile, the geneticist said that if she has a brain bleed too, this changes the ballgame for everyone involved, including the kids.

Stress? Who me?

I know that in the end, all will be well. I have no idea how it will happen, but I do trust and place my faith on the Lord. Things could have been truly awful. The hip could have been broken and the back could require surgery. Also, I could have been told that my lesion was the cause of these problems. I do praise God that he spared us from many potentially horrible consequences. All I would like is a week with no injuries and no doctor visits.

Monday, September 14, 2009

The World's Toughest Audience

We are now a couple of weeks into school and my youngest daughter asked me to talk to her 1st grade class about Ehlers-Danlos Syndrome (EDS). She had already been ridiculed for needing special seating and some of the braces she has to wear to school from time to time.

Of course, I agreed to come and and I set up a time to come into the classroom with the teacher. I have been a teacher for years and thought nothing of talking to a group of 1st graders. The last teaching assignment I had was teaching children in kindergarten through fourth grade.

I began the talk with asking if the kids had ever heard of EDS. Most of the kids said that they had heard it from my daughter but they did not know what it was. I then realized I had no idea how to explain such a complicated medical condition to 6 year olds! Most doctors do not know about EDS! How to you explain the effects of the lack of collagen to first graders?

I admit, I panicked. My daughter saw that I was struggling and quickly came up next to me in the front of the room. She basically took over the talk. She showed the kids how she could hyperextend her joints at which point all of the kids tried to twist themselves into a knot. I was going down in flames!

I took a couple of the braces out of my bag and explained that sometimes my daughter needed to wear these contraptions to help her stay out of pain. One of the kids was in her kindergarten class and said that he knew about the neck brace because she wore it last year. He also explained that she was in a bad mood all day when she wore it. Out of the mouth of babes...

I knew I was in real trouble when one kid asked if her head would fall off and could she die from it. Before I could answer, my daughter explained that her head was finally attached to her body and the doctors saved her life putting in mental plates and screws to keep it on. This is true of course, but it sounded much worst than it really was! She went on to explain that my head was not attached to my body and she wanted me to show my scar. I said no. My C1-C2 scar is not for the faint of heart. She said that I had just had another surgery on my neck and she pulled down the collar of my blouse and showed off the scar like Vanna White!

At this point, most of the kids were still trying to contort themselves when a little boy explained, "Its okay, my daddy has a plate in his head too!"

I wanted to finish on a good note so I said that there were a couple things that they needed to know about EDS. First, they could not catch it like a cold. Everyone ignored this one because they were still trying to to what my daughter did. Second, they needed to be extra careful not to grab, pull or twist my daughter in any way. My daughter quickly pointed out the girl that had twisted her thumb and dislocated it on the first day of school. She kept pointing at her, saying. "I told you not to do that! See my mom agrees with me!" And third, if they see her fall, tell a teacher.

I quickly gathered my things and left ASAP. By this time, I had a pounding headache and was sure that I had made things worse instead of better. The next day my older daughter asked if I would talk to her class too! I just hope 6th graders are nicer!

Friday, September 4, 2009

Is There Anyone There?

I emailed a friend of mine and said that I was thinking about shutting down the blog. Though getting my thoughts down into words has helped me deal with the craziness of the last few months, I seem to be communicating only with myself. I know that there are people that read this from time to time, but I guess I miss the connection that goes on when I do tell my story.

As of late, most people do not ask me how I am doing, I think because they don't want to upset me or listen to me as I tell stories that usually are of some tramatic event. I do not think that people do this because they are uncaring, or malicious. I know that many people pray for our family on a daily basis and we do appreciate it.

It is kind of like dealing with a death of somone close to you. Some people do not like to bring up the subject because they do not want to upset the person greiving.

I am still unsure that I will continue. I know that my blogs are long and boring and I do not expect people to praise me for the blog. I am just looking for more interaction.