First Week of School

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.