Sunday, August 30, 2009

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.

The Wright to Choose

So, less than a week after my C spine fusion, my mom had another fusion of her back because she found out her back was broken. Again, I could not make this stuff up!

I went with my mom to the hospital. Since I was still unable to drive, my husband took us that morning and dropped us off. He went back to work and look after the kids.

My mom called the anesthesia department ahead of time to explain the ordeal she went through last year. (She spent 18 days in ICU due to the loss of the drive to breathe) This very grouchy Dr. Wright, an anesthesiologist came in to interview her before the surgery. Right away we could tell that he had not read any of the notes written up about her.

As soon as he heard about the loss of the drive to breathe, he yelled, "You are not going to have surgery today!" Of course, this upset both of us. He was very rude and said that she was not "fit" for surgery and needs to find out why she had trouble last year before she has a surgery. With her back broken, she really did not have a choice. It is not like a broken back is an elective surgery. Finally he stormed out to "talk" to her spine surgeon. He said he did not want to work on someone that had some weird condition that no one ever heard of. I pointed out that many people at this very hospital knows about EDS as this is the fifth surgery on my mom and myself in the past year at this very hospital! The problem with Dr. Wright is that he did not do his homework before he entered the room.

In mean time, I asked for a supervisor to come in to talk with us. I explained how rude and unprofessional Dr. Wright had been. As we were talking Dr. Wright came back in. His attitude had changed and started to take her history again. I interrupted him and said that we were not comfortable with the way he left the room and what he had said. He held up his hand and told me to stop talking! I almost exploded!

He asked my mom if she wanted someone else to take her case and she said yes. With that, the supervisor left. Dr. Wright then asked me why I had a problem with him. I said if he really wanted to know I would tell him. He said yes. My response to him was that he was very unprofessional in the way he handled his frustration about not knowing about my mom's case. She had done everything she could to prepare the department ahead of time. She was in that same hospital the last year. The records were available. I also said that his frustration was misplaced. He did not need to act with hostility toward my mother, especially given the amount of anxiety she had about having surgery in the first place.

I did not say these words in an angry way, just matter of fact. I was angry, but knowing he would have nothing more to do with the care of my mother, I was relieved. Soon after, the doctor that my mom talked to on the phone came in and completed the paperwork and took her case.

The surgeon came back and checked on my mom. He said, "You choose your surgeon, you should choose your anesthesiologist too!" I think that he was just as happy as we were not to deal with him again. Thank God!

Soon afterward, our priest came in and sat and waited with us. I think that had he been in the room at the time, Dr. Wright would not have been so rude. It is said to think that there are still men that cannot deal with women as thinking individuals.

Our priest sat with me as I nervously talked for three hours. I work with him at the church and I have gone out west with him on mission trips in the past. I joked that I noticed that he no longer traveled in the same car with me because I talk too much. He said, "When I get in the car it will be quiet." I laughed, knowing that he was so kind to listen to me, but he would be glad when it was over.

The surgery went well and the surgeon called us back to explain how well it went. I sent the priest home and waited by myself for her to come out of the recovery room. In this hospital there is a screen that lets you know the stage your loved one during the surgery process. I kept waiting for them to call me back to see her. I saw that the most anyone else had to wait was 45 minutes. At the 1 1/2 point, I went to the desk to see what was going on. When a lesion was called out to talk to me, I knew it was bad.

She led me to her. I was anxious to see if they had re-intebated her. I figured that she was having the same trouble as last time. I was relieved to see that they had not. She was not breathing unless reminded. The nurse also explained that an intensivist would be back to see her. I told her I wanted to speak with him. I asked the name of the intesivist, which was the same doctor that took care of my mom last year. I fought with him every day about my mom.

When I did come back to speak to this doctor, he took one look at me and hung his head. Just when he thought the nightmare was over, I was back!

The first thing I said was, "You are not re-intebating her are you?" He quickly agreed. I think that they re-intebated her last time, causing pnemonia and other troubles. He thought that there was something in the brain that was causing her central nervous system to malfunction. Her brain was not tell the body to breathe for some reason.

He had a new idea to help "wake up" her system. Basically, he pumped her with a bunch of caffine. When this did not work completely, he gave her a medicine that would wake her up.

All in all, she spent a day and a half in ICU. She was then sent to a regular room, then to a rehab room in the hospital. She is recovering at home and getting stronger every day.

The moral of this story is that sometimes Dr. Wright is just wrong! You have the right to choose how works on you and you must be your own advocate!

Tuesday, August 11, 2009

Thank You

I am overwhelmed at the number and thoughtfulness of people that have help my family in the last year and a half. Countless people have prayed, made food, watched our children, listened, counseled, and loved us through this time. It is to a loving God, that I send my thanks because I believe that is the source of all goodness. I think that some people are unaware even of their divine prompting at helping our family. I do not wish to discount their generosity, but to collect it into a feeling of love that has sustained us for so long.

Today I read in God Calling "I have not promised Peace but not leisure, harvest and comfort, but not pleasure. I have said, 'In the world ye shall have tribulation'; so do not feel when adverse things happen that you have failed or are not being guided, but I have said, 'In the world ye shall have tribulation:but be of good cheer; I have overcome the world.'"

With prayer, there is always healing, but not always a cure. I feel that my healing is very deep inside me. A type of hope that nothing can destroy. I feel the need to live in the present, so that I can focus on healing instead of despair.

Monday, August 10, 2009

Eye Off the Prize

I thank all of you for praying for me for the last few days. The pain is not as bad and continues to improve. I am going to have to keep myself in a low gear to tollerate the pain through the day. If you know me at all, this is the most difficult part. What I had to do is to go back and look at the promises that God made me (and all of us). The promise was that He will never forsake me. With all of the pain and self-pity, I lost sight of that. I believed the lie that the doctors had let me down. The problem with this thinking is putting too much emphasis on the healing capablilities of the doctors and not on God's healing.

I had to let the bitterness and anger go so that I could accept help from the Holy Spirit. The two do not go together. It was like I took my eyes off of the prize and got a sledgehammer to the head. Now that I am more relaxed and properly focused, the pain decreased substantially.

Some of you might think this sounds crazy, but I think this was God's plan all along. To say that I could get through the post op time with only Tylenol would be too unbelieveable. The fact that I am shows that the Holy Spirit is taking the pain. I am not going to lie and say that I feel no pain, because I do. But it is not the despairing type of pain. There is a real difference. I know that each day I will feel a little better. I know that I have to go very slowly right now. I know that I will have more pain if I try to do too much. But there is light at the end of the tunnel.

Please pray for my mom as she is going to have back surgery to repair a broken back on Friday. I am not sure how everything will work, but I know it will.

Saturday, August 8, 2009

Walk in the Scary Jungle

I spoke too soon about the walk in the park. The only pain relief that the surgeon is giving me is Tylenol! I can't even take Motrin.

The pain was pretty bad last night. Today is not much better. I tried to talk to the surgeon about the pain control before the surgery, but I was assured it would be okay.

So I have a 5 inch incision and metal screws and plates in my neck and no pain relief. I feel like the surgeon treated me like a piece of meat and totally dropped me as soon as I left the operating room.

Please pray for me as I am at a very low point right now.

Friday, August 7, 2009

Post Op

I got home from the hospital yesterday afternoon. I felt instant relief from the painful swallowing and my arms are feeling better. The only problem is I have developed another allergic reaction to the pain meds. Last night was difficult because I had hives all over my body.

The surgeon called in a steriod and another pain med, but I think I might be allergic to this one too.

Thank God I didn't have this reaction after my C1-C2 or I would not know what to do. Compaired to my previous surgery, this was a walk in the park.

My mom went to see this same surgeon yesterday and he wants her in for surgery as soon as possible. I hope it is too because she is in a lot of pain.

Thanks to all of you for your prayers. God is good!

Tuesday, August 4, 2009

Seriously, Should I Expect Anything Less?

My plan was that I would write my next blog entry after my surgery, but as usual, things did not go as I expected.

First, my son came down with some kind of illness with a rash over the weekend. We took him for a strep test and it came up negative. By Monday, he was feeling better, but my oldest daughter was now sick. He had an appointment to talk to the doctor on Monday, so the whole family went with him.

When we arrived, our regular doctor had 2 med students with him. Of course they were curious about the girls. The nice thing was, the doctor asked permission from the girls for them to examine them. My youngest was uncharacteristically cooperative. They both felt empowered to make a decision instead of having to deal with the doctors.

Anyway, both kids probably have 5ths disease. This would be okay, but we had a friend over Saturday and she is in her 3rd trimester. Of course! This also puts me in jeopardy as well as all the plans that my husband has made for the children. We are getting better about punting, it really does not upset us as much now.

Only one doctor appointment for us today and it went well. However, my mom went to see the spine surgeon. She has continued to have pain since her back surgery last year. She has had trouble sleeping, uncontrolled sweating and bladder infections recently.

She had gone to her regular doctor, the geneticist, the sleep doctor and others. They thought she was having a thyroid problem. It turns out that she has A BROKEN BACK!

She fell a few weeks after coming home from her month stay at the hospital following her other surgery. She had called the surgeon's office and was assured that nothing could have happened. Well, we now know why my daughters are so tough!

In a way, this is a good thing, if a broken back could ever be good. The surgeon thinks this is the cause of the majority of her problems. So, she could have surgery very soon and I am hopeful that she will get some relief.

For years, we did not have answers and we just kept going. Now we have answers and we don't like them, but they are answers. I wonder which is better. Sometimes I would like to take my family and hide and not go to the doctor appointments, but I also remember how badly I felt all my life and how I just kept going, despite the pain. I also had in the back of my head that something was wrong with me in the head. (Of course, I did find out later that my head was not on right, but only I can make that joke!)

I was very upset last week and down on myself about when to go to the doctor and when to stay home. I have decided that I was putting way too much pressure on myself. If the doctors cannot agree and are not sure what to do, what makes me think that I can do what they cannot. I don't have a medical degree and I am on pain meds and in extreme pain most of the time. What makes me think that I should be right about these decisions?

Anyway, I gave myself permission to not have the answers. It is very freeing and took a weight off my shoulders. I am not going to be right and that is okay. For so long, doctors did not believe me or listen. Now with EDS and a brain lesion, hypertension, chronic pain, lordosis of the C spine and so on, they are finally offering relief and I am glad.

I look forward to finally having something done about my pain. I do not have any illusions that it will fix everything, but it is something.

Please pray for me and my family.