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.
