The first week of school was just last week and I am glad it is over. Because both of my girls have such rare medical needs, there is a lot of communication that needs to happen in order for them to be safe at school. My oldest daughter was returning to the same building as last year, but there are only a couple of people on her new team that knew anything about her. All of the administration had changed. We were blessed that she had the same physical therapist, however.
My younger daughter has spinal abnormalities along with the hypermobility that would make any school personel nervous. She dislocates very easily, but she also has a fagile spine that requires the whole staff to know about her condition in case something would happen. For instance, at times her lower back subluxes causing her legs to be numb and she loses bowel and bladder control. Any time of fall usually results in a dislocation. In fact, before school started, we went to an open house. She was so excited to see the gym teacher that she shook his had so vigirously that her shoulder popped out. The gym teacher noticed it and she flug it back in place without skipping a beat.
Our family is so blessed to be surrounded by such wonderful people. It seems that every need is met, even before we recongnize the need. The staff at the elementary school has been wonderful. I had a long meeting with the school nurse. She, in turn, briefed the rest of the staff about my daughter's needs. She is just entering first grade.
There is only one physcial therapist (PT) in the whole district. I am not sure how she does it, but she is wonderful. Our genetisit wrote a book on Ehlers-Danlos and the PT not only read it, but also made a quick summary for the teachers to read. This has been extremely helpful during our meetings.
We have to inform everyone from the lunch ladies to the bus drivers about our girls so that everyone has an idea of what to do in case of an emergency, but this has lead to high anxiety for everyone involved. We try to reassure everyone that we are simply trying to give information in the off chance something will happen. But as the title of this blog explains, we all know it will.
The first day of school I got a call from the nurse at my youngest daughter's school. Apparently, she had upset another little girl in the class and this little girl grabbed her thumb and twisted it. It popped out and she was sent to the nurse only after it was discovered some time later. She did not want to tell the teachers because she wanted to ride the bus home. I rushed up and looked at her thumb and sent her on the bus.
When I rounded the corner, I saw the principal. She looked like she was ready to faint. I think she thought I would be really upset. I was not. If you have learned anything about our family in reading these blogs, it is that this kind of stuff happens all the time. If any kid that day was going to have thier thumb twisted, it would be my child!
That night, by husband had to leave on a business trip. Being tired becuase of my surgery, it made it difficult to think about him leaving, but it nessisary and I knew it. As soon as he left, my kids were getting some ice cream. My son went to get the ice cream with the scooper, when it slipped and came up and hit his lip and teeth. It chipped a tooth and broke open his lip and brused it badly.
The next day my mom was released from the hosptial. I thought I could pick her up around the time that my youngest daughter had an appointment not far from the hospital. Of course, things could not work out that easily.
I got a call on Tuesday about midday that my oldest daughter had popped out her wrist holding on the rail. She was in a lot of pain. I quickly tried to call her orthapedic doctor as well as the genetisit, because I was unsure what to do. It is difficult to make desisions when in a lot of pain, let alone when different doctors tell us different things. I could not get anyone on the phone.
When I picked my oldest daughter up, she was in a lot of pain. I decided to take her to have an x-ray, just to be safe. My thoughts were that she was not that much pain, but she was stressed with school and used this to get out of it. I also did now have much time as I needed to get my other daughter from school soon to make it to the appointment downtown. I had to ask our priest's wife to pick up my mom. The day was slowly unraveling.
I got my daughter to the ER for some quick pictures. I tried to see if the anxiety of being at school was the reason for the trip, or that she was truly in pain.
The doctor came back and said she was fine. The ortho looked at the wrist pictures and he did not see a dislocation, just some swelling. It was problably out at one time and went back in.
My daughter was upset and kept saying that there was something wrong. She said that her fingers were cold and she had a weird sensation in her thumb. I had just about enough and quickly took her back home. I told her to be tough about it as I could not take one more thing. A friend had already planned on coming to our house in the afternoon to look after the kids while I took my youngest to the appointment.
She arrived as I was dropping my oler daughter off. She would not make it back to class as it was too late. I quickly went and picked up my younger daughter from school and headed down for the appointment.
Thank God we arrived on time and the appointment went well. I came home and dropped off my other daughter and rushed to my mom's house to check on her. She was alone and I was very worried about her. I got her settled and rushed back home.
My friend that was watching the kids ordered dinner for us. This was a true blessing as I was completely exhaused by this time. I came home and was told that my son had fallen on his scooter and his thumb hurt and so did his arm.
The next day, I was making phone calls and writing emails as a follow up to the school meetings when I got a call from the genetisit. Rattled off many questions to him about my mom and the possiblity that she has central apnea, questions about school for the girls and other questions. Finally, he interrupted me and said that he did have a reason for calling. He said that he did not agree with the ER doctors opinion about my older daughters wrist. He said that it was out of place and he described her symptoms of numbness and coldness before I could tell him. I just laughed and said that I am wrong again. I would have to eat my words about being tough to one of my daughters once again!
He also was very concerned about my mom. If she did have central apnea and it was caused by a bleed in the brain, this is a game changer for all of us. Because I have a leision in my brainstem, discovering one in my mom would mean that there might be a vasucular complication to our form of EDS. He was very concerned and told me repeatedly that my mom needs to have an image of her brain ASAP.
Maybe I am in denial, but I don't think this is what is going on with my mom. I went to pick up another C pap machine for my mom because she turned hers in a couple of months ago. (Don't even go there!) The nurse that gave me the machine for my mom came up with a probable cause for the apnea. She said that with severe apnea the body gets used to lower oxygen levels and higher carbon dioxide levels. When someone goes under anethesia, the patient is "hyper oxygenated" and the brain is not used to it so it does not tell the body to breath, because it is trying to get to the level where it was before the surgery.
I think that the doctors will do many test and scans an so forth and find that this experienced nurse is right. Agian, I might be kidding myself, but I cannot bring myself to worry too much about the possible brain involvement at this time. Even if I did worry, what would it gain me? Sleepless nights? My mom could not even think about undergoing an MRI at this time because of her surgery.
The rest of the week was a blur until my husband came home on Thursday afternoon. By Friday night I was of no use. I go to the schools every day for medication and to my mom's house twice a day. So much for free time as my kids go back to school. All I can say is that I hope next week is a little less chaotic. But, as you can tell, one never knows. All I know that is God is already there.
Showing posts with label EDS and crossing the street do not mix. Show all posts
Showing posts with label EDS and crossing the street do not mix. Show all posts
Sunday, August 30, 2009
Wednesday, July 1, 2009
How does a girl with EDS cross the street?
Here is a snapshot on what life looked like on January 31, 2009. Wednesday the kids were playing in the snow all day. I came out briefly to call them in. Elizabeth started to walk across the street. Other neighbors were out and I was talking to my friend, who also is an OT. We turned back to Elizabeth and saw that she was scooting on her butt across the street. When I asked what she was doing, she said that she dislocated her knee. She said later that she didn't want to cry because there were a lot of little kids by her and she didn't want to scare them.
The neighbors helped her in the house. We had to remove all 4 layers to see her knee. When we looked at it, we could tell that she was right. It was definitely out of place. My friend the OT had never realigned someone so I had to tell her and her husband what to do. I was in charge of bending her knee at the end. Mind you I am less than 3 weeks post op from my C1-C2 fusion and without pain meds because of the storm and my husband was in Detroit .
We thought we were successful and moved her to a reclining chair. Elizabeth said that she could not feel her leg from the middle of her knee down. She said that above her knee hurt really badly. I called our primary doctor, because I knew if I called Children's they would make me bring her in and I could not drive. I was also in so much pain that I could not think clearly.
The doctor said to give her some of Erica's roxycodone and wait for a while. His thought was that the knee was not in place. He said to get two big guys to help. We did this and she really screamed. We tried a couple of times. One of the guys that came over is an x-ray tech and he thought that we were unsuccessful.
I got a neighbor to drive us to Liberty Children's. When the x-ray came back, they said that the knee was in place, however, the end of the tibia was fractured.
Now I feel terrible. I don't feel bad for the original pull; because I knew it was out, but the other ones make me cringe!
It took a lot of morphine to get her pain under control. I told them that she had just dislocated her shoulder so that crutches were out of the question.
Of course Chuck is out of town. We got back to the house at 11:30. Elizabeth had a hard time getting to sleep. We slept in the red chairs in the great room. Of course, through all of this I did not have my pain pills due to the fact that the nurse did not call me back and because of the snow storm. I was in so much pain that my eyes were crossing. We did not get much sleep because she vomited for most of the night, I guess because of the morphine.
The next day I had to get someone to take me and Erica down to the main Children’s Hospital because of her abdominal pain. She was getting so bad that she would just scream and roll on the floor in pain. She could not go, so I had to leave Elizabeth with a neighbor and take Erica down to the hospital for the visit. The ER the night before said that they faxed a copy of the order for the wheelchair and we could pick it up while we were down there. The problem was the roads were so bad that I needed someone with 4 wheel drive to take us. By this time I was in so much pain and had not slept that my brain just fried. The only thing that I could do was to call the church and see if anyone could take us to the hospital. Fr. Daggett answered the phone and said that he had a 4 wheel drive car and he would take us. I just broke down and cried. Then I called my ortho doctor to tell him that the nurse had not called in the medicine after 4 days. The office manager happened to answer the phone. I was beyond pissed and she got an ear full. She put the nurse on the phone and she proceeded to give me excuses. I said I do not want to hear excuses, I want results. She said that she could call in all of the meds, except one, which needed to be picked up because it is a narcotic.
Anyway, he took us down an icy highway. I called before Erica’s appointment to see about the wheelchair. Of course no one got the order and the lady on the phone said that she did not know if she could help me. At that point I thought I was going to lose it. I explained a little of our situation and she said, that she would do all in her power to make it happen. She said that I don’t care what I need to do to get this chair for you, by the time you leave you will have one. I thanked her and told her that she had no idea what her kindness meant to me.
We went to the GI doctor and he came in the room all happy and said, “How are we doing today?” Well, I became one of those psycho people that give you way too much info for a question like that. I said, I really needed to get one kid some pain relief for at least one part of their body or I was going to lose it.
The doctor was wonderful. He said that it sounded like we had already cleared the pipes so to speak and that she was probably cramping. Erica said, “No, you just could not feel the hard poopy, it is still in there.” To which the doctor said that she was a very sophisticated 5 year old. He has no idea. The doctor sent us to x-ray to see who was right. Erica asked me if she thought the doctor or she was right. I said that she knows her body pretty well. She said that she was glad that she didn’t bet the doctor because he went to school for a long time to study about poopy.
I called the wheelchair lady when we were finished with the x-ray and she said that the wheelchair was available, but we would have to drive to get it. I am so glad that Fr. had his car, because many of these streets were not even plowed. We got the wheelchair, and then headed for the other hospital to pick up the prescription. God love Fr. he had to listen to me for hours, for as you know, when I am stressed, I talk a mile a minute. At the end of the drive I apologized for talking his ear off, he said, “Don’t worry, I didn’t put in my hearing aides today.”
Of course, this was also the day that I was supposed to go with Mom to see the new surgeon about her hernia. She kept asking what she could do and I said that the only thing I wanted was for her to get a ride from someone so that she didn’t need to drive alone. She said that she didn’t want to do that and she was a better driver than most of the people around here, which is probably true. However, I screamed that I wanted to have just one less worry for the day and if she really wanted to do me a favor, she would get someone to drive with her. She got very upset with me, and then we both calmed down. We both apologized. She did try to find someone, of course not very hard, and ultimately drove herself. It took her over 2 hours to drive to downtown Cincy. I just had to let it go. The surgeon, it turns out, has operated on several people with EDS. He said that he was surprised that her whole abdomen had not exploded. The operation will not be a simple hernia deal. They are going to have to drill a hole in her hip bone, and then attach the muscles of her abdomen to the bone. She will have the surgery on the 10th and she will have to stay the night. Of course the next day is Erica’s birthday. Thankfully, Chuck is going to take that whole week off.
When I got home, Chuck had arrived and was picking up Elizabeth ’s prescription. All we could give her was over the counter meds because the roads were so bad that we could not get to the pharmacy. He came home, gave Elizabeth her meds, picked up my prescription then her came home. All day I was trying to get a hold of an orthopedic doctor to talk to them about her leg. She still did not have feeling below the knee and when I finally saw her, her leg was cold and did not have a pulse. I called my regular pediatrician and he said that he was worried that she had compartment syndrome and might lose her leg. As I was talking to him, the nurse from the ortho doctor finally called. They both agreed that she needed to be seen right away. The doctor offered to have one of the doctors stay late just to see her so that we could avoid going to the ER again. Chuck headed out again, because I finally took pain meds. Everything was okay. The leg was cold because Elizabeth had the knee immobilizer on too tight. The lack of feeling is still a problem. They think that we pulled on the leg so much that we damaged the nerve in her leg. The doctor that we were scheduled to see that specializes in this type of nerve damage is going to see her on Tuesday. Again, thank you Jesus!
It turned out that the doctor was right. He told us not to give her any more Miralax until we heard from him. He did not call until 6:00PM. At about 4:00PM Erica rushed into my room and said, “Mommy, there is something glorious in the bathroom!” Coming from Erica, I was a little worried. She had a formed stool. When I told the doctor about her quote, he said that she was one of the most expressive kids he has ever seen. I told him again, he had no idea.
Today, we were all able to rest, thank you Jesus. The last couple of days were really hard, but again, when things looked really dark, God shined a light.
Chuck is heading out of town again on Tuesday morning and will return on Thursday night. He felt so bad that he was not here for all of this. I told him that last thing we need is for him to lose his job. I told him that we have a good network of people willing and able to help us. Again, thank you God.
The neighbors helped her in the house. We had to remove all 4 layers to see her knee. When we looked at it, we could tell that she was right. It was definitely out of place. My friend the OT had never realigned someone so I had to tell her and her husband what to do. I was in charge of bending her knee at the end. Mind you I am less than 3 weeks post op from my C1-C2 fusion and without pain meds because of the storm and my husband was in Detroit .
We thought we were successful and moved her to a reclining chair. Elizabeth said that she could not feel her leg from the middle of her knee down. She said that above her knee hurt really badly. I called our primary doctor, because I knew if I called Children's they would make me bring her in and I could not drive. I was also in so much pain that I could not think clearly.
The doctor said to give her some of Erica's roxycodone and wait for a while. His thought was that the knee was not in place. He said to get two big guys to help. We did this and she really screamed. We tried a couple of times. One of the guys that came over is an x-ray tech and he thought that we were unsuccessful.
I got a neighbor to drive us to Liberty Children's. When the x-ray came back, they said that the knee was in place, however, the end of the tibia was fractured.
Now I feel terrible. I don't feel bad for the original pull; because I knew it was out, but the other ones make me cringe!
It took a lot of morphine to get her pain under control. I told them that she had just dislocated her shoulder so that crutches were out of the question.
Of course Chuck is out of town. We got back to the house at 11:30. Elizabeth had a hard time getting to sleep. We slept in the red chairs in the great room. Of course, through all of this I did not have my pain pills due to the fact that the nurse did not call me back and because of the snow storm. I was in so much pain that my eyes were crossing. We did not get much sleep because she vomited for most of the night, I guess because of the morphine.
The next day I had to get someone to take me and Erica down to the main Children’s Hospital because of her abdominal pain. She was getting so bad that she would just scream and roll on the floor in pain. She could not go, so I had to leave Elizabeth with a neighbor and take Erica down to the hospital for the visit. The ER the night before said that they faxed a copy of the order for the wheelchair and we could pick it up while we were down there. The problem was the roads were so bad that I needed someone with 4 wheel drive to take us. By this time I was in so much pain and had not slept that my brain just fried. The only thing that I could do was to call the church and see if anyone could take us to the hospital. Fr. Daggett answered the phone and said that he had a 4 wheel drive car and he would take us. I just broke down and cried. Then I called my ortho doctor to tell him that the nurse had not called in the medicine after 4 days. The office manager happened to answer the phone. I was beyond pissed and she got an ear full. She put the nurse on the phone and she proceeded to give me excuses. I said I do not want to hear excuses, I want results. She said that she could call in all of the meds, except one, which needed to be picked up because it is a narcotic.
Anyway, he took us down an icy highway. I called before Erica’s appointment to see about the wheelchair. Of course no one got the order and the lady on the phone said that she did not know if she could help me. At that point I thought I was going to lose it. I explained a little of our situation and she said, that she would do all in her power to make it happen. She said that I don’t care what I need to do to get this chair for you, by the time you leave you will have one. I thanked her and told her that she had no idea what her kindness meant to me.
We went to the GI doctor and he came in the room all happy and said, “How are we doing today?” Well, I became one of those psycho people that give you way too much info for a question like that. I said, I really needed to get one kid some pain relief for at least one part of their body or I was going to lose it.
The doctor was wonderful. He said that it sounded like we had already cleared the pipes so to speak and that she was probably cramping. Erica said, “No, you just could not feel the hard poopy, it is still in there.” To which the doctor said that she was a very sophisticated 5 year old. He has no idea. The doctor sent us to x-ray to see who was right. Erica asked me if she thought the doctor or she was right. I said that she knows her body pretty well. She said that she was glad that she didn’t bet the doctor because he went to school for a long time to study about poopy.
I called the wheelchair lady when we were finished with the x-ray and she said that the wheelchair was available, but we would have to drive to get it. I am so glad that Fr. had his car, because many of these streets were not even plowed. We got the wheelchair, and then headed for the other hospital to pick up the prescription. God love Fr. he had to listen to me for hours, for as you know, when I am stressed, I talk a mile a minute. At the end of the drive I apologized for talking his ear off, he said, “Don’t worry, I didn’t put in my hearing aides today.”
Of course, this was also the day that I was supposed to go with Mom to see the new surgeon about her hernia. She kept asking what she could do and I said that the only thing I wanted was for her to get a ride from someone so that she didn’t need to drive alone. She said that she didn’t want to do that and she was a better driver than most of the people around here, which is probably true. However, I screamed that I wanted to have just one less worry for the day and if she really wanted to do me a favor, she would get someone to drive with her. She got very upset with me, and then we both calmed down. We both apologized. She did try to find someone, of course not very hard, and ultimately drove herself. It took her over 2 hours to drive to downtown Cincy. I just had to let it go. The surgeon, it turns out, has operated on several people with EDS. He said that he was surprised that her whole abdomen had not exploded. The operation will not be a simple hernia deal. They are going to have to drill a hole in her hip bone, and then attach the muscles of her abdomen to the bone. She will have the surgery on the 10th and she will have to stay the night. Of course the next day is Erica’s birthday. Thankfully, Chuck is going to take that whole week off.
When I got home, Chuck had arrived and was picking up Elizabeth ’s prescription. All we could give her was over the counter meds because the roads were so bad that we could not get to the pharmacy. He came home, gave Elizabeth her meds, picked up my prescription then her came home. All day I was trying to get a hold of an orthopedic doctor to talk to them about her leg. She still did not have feeling below the knee and when I finally saw her, her leg was cold and did not have a pulse. I called my regular pediatrician and he said that he was worried that she had compartment syndrome and might lose her leg. As I was talking to him, the nurse from the ortho doctor finally called. They both agreed that she needed to be seen right away. The doctor offered to have one of the doctors stay late just to see her so that we could avoid going to the ER again. Chuck headed out again, because I finally took pain meds. Everything was okay. The leg was cold because Elizabeth had the knee immobilizer on too tight. The lack of feeling is still a problem. They think that we pulled on the leg so much that we damaged the nerve in her leg. The doctor that we were scheduled to see that specializes in this type of nerve damage is going to see her on Tuesday. Again, thank you Jesus!
It turned out that the doctor was right. He told us not to give her any more Miralax until we heard from him. He did not call until 6:00PM. At about 4:00PM Erica rushed into my room and said, “Mommy, there is something glorious in the bathroom!” Coming from Erica, I was a little worried. She had a formed stool. When I told the doctor about her quote, he said that she was one of the most expressive kids he has ever seen. I told him again, he had no idea.
Today, we were all able to rest, thank you Jesus. The last couple of days were really hard, but again, when things looked really dark, God shined a light.
Chuck is heading out of town again on Tuesday morning and will return on Thursday night. He felt so bad that he was not here for all of this. I told him that last thing we need is for him to lose his job. I told him that we have a good network of people willing and able to help us. Again, thank you God.
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