Just when I thought the storm was over, we were hit by lighting!!
It all started a few weeks ago when Erica started to complain that when she looked up, her "eyes would go black". She also said that she was very dizzy after these episodes. I took her to her regular doctor and he thought it was a virus. When it continued I sent out an email to her doctors explaining her symptoms. A few days later we had a regularly scheduled appointment with the geneticist. He said that he thought that her skull was starting to slip from the base of her spine. This is causing the bones to either impinge the arteries going into the brain or hitting against her brain stem.
I cannot believe we are in this position AGAIN!! I thought when the doctors fused C1-2 in her neck, that she was safe. Apparently this is extremely rare. But to be honest, no one knows what to expect because she was one of the first to be fused at C1-2 and one of the youngest.
The best scenario would be that it was just hitting against the arteries. Best scenario, she could have a stroke. Really?!! Come on, REALLY??!! A stroke? the worst case scenario obviously is death because she is hitting her brain stem and the brain stem is what controls things like breathing and heart beat. What the doctors are saying to us is there is a possibility that if she moves her head in the wrong direction, she could die immediately. Wow!!
How do you go on from there? How to you just sit and joke with her? She is wearing her neck brace and hating every minute of it. Do I tell her how dangerous it is to go without it and what could happen as she is trying to negotiate with me? Where is this in the book "What to Expect When you have a Child"?
Right now we have several doctors doing what they can to think of the best way to keep her safe. One doctor is calling other doctors from around the country to find someone that has experience in dealing with cases like this. She will be seen locally here in Cincinnati, but also up at the Cleveland Clinic. But this has been going on for weeks and only her regular doctor, the geneticist and a doctor outside of the Children's Hospital. If she simply had a broken arm, she would have been seen and on the way to healing. When it comes to her brain and we have to wait around!! God is calling me to wait upon Him, so I cannot argue with that.
Erica went for a CT scan the other day. It took over 45 min to convince her to get onto the table for the test. CT scans are very quick, but she had it in her mind that she did not want to do it. Through the screaming and crying we all discovered that she is scared to death to find out the results. To be honest, I feel the same way. I cannot imagine going through something like this as an adult, let alone an 8 year old going through this for a second time. She does not trust anyone at this point. She does not understand why the adults around her don't know what to do. When her eyes go black, she gets very frighten. When Erica self-limits her activities and decided to use a cane on her own because she is afraid of falling you know this is a miracle in and of itself!
All things aside, I know that I know that I know that she will end up okay in the end. People say I have a lot of faith. I am not sure what that means other than I have experience to show that God will never leave us. He has kept every promise and fulfilled every need just as we need it and sometimes even more than we could have ever expected. I would be a fool to stop believing Him now.
The hard part is getting to that "okay" status. The school called and asked that we agree to put her on home instruction. I understand their point and to be honest, if I were in their shoes, I would do the same thing.
We are so blessed to have so many of you that have prayed and supported us over the years. I believe that God has listened to your prayers and His blessings have rained down upon us. All I have to do is to sit in my kitchen!! Please continue to pray, please for CJ and Elizabeth and especially Chuck. This is very difficult for all of us.
Saturday, January 14, 2012
Sunday, October 2, 2011
"Mommy, I am WAY under dressed for this funeral!"
Do you every get to a place and think to yourself, "How in the world did I get here?" I found myself asking that question as I was standing at my grandmother's funeral service rocking my mom jeans and trying to answer Erica's question as she was taking off the ER bracelet off of her wrist.
We had another one of those days a couple of weeks ago. My son had hurt his hand on the first day of fall baseball practice. Ball against finger- ball won. He broke it right on the growth plate, of course, and had to go in for a cast. This was scheduled for the morning of my grandmother's funeral. She had died the weekend before, peacefully. It was very hard on the kids as she lived close and they saw her quite a bit. This was their first funeral that they lost someone so close.
Anyway, I was driving CJ back to school and heading home when I got a call from Chuck that Erica's school called and said that her arm was hurting, had electric shocks down to her fingers and she could not put her shoulder back in on her own. I told him that I was close to the school and I would drop by to "pop her back in place." (Why do I think it will be just and easy fix?) I got to the school and realized that I could slide her shoulder back in place easily, however, it would not stay in place. So I called the orthopedic surgeon and said, "I can get her shoulder to slide back in place, but it will not stay there." (Remember these words, you will see them again. It is called foreshadowing, I think, in literary terms). I was told to bring her down to the ER to the main campus right away.
Okay, so we are off to the worst place we can think of in a 300 mile radius, the emergency room. Not that this particular ER is bad, it is just all ERs are stressful for everyone, but especially hard for kids with a rare orthopedic syndrome. We call it the "Horse and Pony Show" because the residents, med students and such want to come in and see the cool party tricks she can do because of the EDS.
Erica endures the poking, prodding, questioning and x-ray pretty well. The chief of the ER comes in who happens to be a friend of our regular pediatrician. He takes one look at her and we were shown the forms for permission for sedation so they can put her shoulder back in place. The next minute this very young ortho resident comes in and says that she needs another x-ray.
The x-ray he orders is one that required her to put her shoulder in a position that she thought would hurt her. The x-ray techs did not help by pushing her and yelling in her ear. I stopped the whole thing saying that her pain was not addressed and until she got something for her pain, we would not proceed. The medical student was trying to hurry her along so she would not miss her great-grandmother's funeral so he runs out of the room to tell the head of the ER about the resident. I guess they have a big fight over what to do, but the ortho resident is now calling the shots. I just love it when a resident pokes his nose in where a 40 yr vet of the ER has it under control!
The doctors give Erica her medicine and the ortho resident comes back in to explain that the x-ray is not that big of a deal. He promised that he would go in and talk to the x-ray techs on how to do it. Well, he lied, of course, and she and the techs screamed at each other until the pictures were taken.
After 6 HOURS this is what the orthopedic resident said to me, "I can get her shoulder to slide back in place, but it will not stay there." REALLY? "What are you going to do about it?" "Nothing, I can't do anything in the ER." You mean to tell me that after 6 hours, potentially missing my grandmother's funeral, painful x-rays, screaming and all the other fun we have had and this is all you can offer her? I told you this hours ago!!! I thought the top of my head was going to come off!!!
"Can't you even tape the shoulder in place so she can get out of pain at least temporarily?" He said he didn't know how to do that. Don't they have guys without med school educations that do that next to the football field every Sunday? "Yeah, but I don't know how."
Fabulous!!! Out the door with a girl that wants to rip off her arm it hurts so badly to try to make it to at least a little of the funeral. I was supposed to read one of the scripture verses during the service for her and I am in jeans, no make-up and I was pretty sure I remembered to brush my hair this morning...not so sure about my teeth. I can't remember the last time I took a shower because of course I would have time before the funeral.
We get there at least 15 minutes into the service. "Mommy, I am WAY under dressed for this funeral!" says Erica as we take our seats. "I know Sweetie, so am I, but Nana doesn't care anymore."
We had another one of those days a couple of weeks ago. My son had hurt his hand on the first day of fall baseball practice. Ball against finger- ball won. He broke it right on the growth plate, of course, and had to go in for a cast. This was scheduled for the morning of my grandmother's funeral. She had died the weekend before, peacefully. It was very hard on the kids as she lived close and they saw her quite a bit. This was their first funeral that they lost someone so close.
Anyway, I was driving CJ back to school and heading home when I got a call from Chuck that Erica's school called and said that her arm was hurting, had electric shocks down to her fingers and she could not put her shoulder back in on her own. I told him that I was close to the school and I would drop by to "pop her back in place." (Why do I think it will be just and easy fix?) I got to the school and realized that I could slide her shoulder back in place easily, however, it would not stay in place. So I called the orthopedic surgeon and said, "I can get her shoulder to slide back in place, but it will not stay there." (Remember these words, you will see them again. It is called foreshadowing, I think, in literary terms). I was told to bring her down to the ER to the main campus right away.
Okay, so we are off to the worst place we can think of in a 300 mile radius, the emergency room. Not that this particular ER is bad, it is just all ERs are stressful for everyone, but especially hard for kids with a rare orthopedic syndrome. We call it the "Horse and Pony Show" because the residents, med students and such want to come in and see the cool party tricks she can do because of the EDS.
Erica endures the poking, prodding, questioning and x-ray pretty well. The chief of the ER comes in who happens to be a friend of our regular pediatrician. He takes one look at her and we were shown the forms for permission for sedation so they can put her shoulder back in place. The next minute this very young ortho resident comes in and says that she needs another x-ray.
The x-ray he orders is one that required her to put her shoulder in a position that she thought would hurt her. The x-ray techs did not help by pushing her and yelling in her ear. I stopped the whole thing saying that her pain was not addressed and until she got something for her pain, we would not proceed. The medical student was trying to hurry her along so she would not miss her great-grandmother's funeral so he runs out of the room to tell the head of the ER about the resident. I guess they have a big fight over what to do, but the ortho resident is now calling the shots. I just love it when a resident pokes his nose in where a 40 yr vet of the ER has it under control!
The doctors give Erica her medicine and the ortho resident comes back in to explain that the x-ray is not that big of a deal. He promised that he would go in and talk to the x-ray techs on how to do it. Well, he lied, of course, and she and the techs screamed at each other until the pictures were taken.
After 6 HOURS this is what the orthopedic resident said to me, "I can get her shoulder to slide back in place, but it will not stay there." REALLY? "What are you going to do about it?" "Nothing, I can't do anything in the ER." You mean to tell me that after 6 hours, potentially missing my grandmother's funeral, painful x-rays, screaming and all the other fun we have had and this is all you can offer her? I told you this hours ago!!! I thought the top of my head was going to come off!!!
"Can't you even tape the shoulder in place so she can get out of pain at least temporarily?" He said he didn't know how to do that. Don't they have guys without med school educations that do that next to the football field every Sunday? "Yeah, but I don't know how."
Fabulous!!! Out the door with a girl that wants to rip off her arm it hurts so badly to try to make it to at least a little of the funeral. I was supposed to read one of the scripture verses during the service for her and I am in jeans, no make-up and I was pretty sure I remembered to brush my hair this morning...not so sure about my teeth. I can't remember the last time I took a shower because of course I would have time before the funeral.
We get there at least 15 minutes into the service. "Mommy, I am WAY under dressed for this funeral!" says Erica as we take our seats. "I know Sweetie, so am I, but Nana doesn't care anymore."
Sunday, July 31, 2011
"Hope is a Dangerous Thing"
Elizabeth made it through the surgery and is recovering well. She is less than 2 weeks out and already running! Her pain level is much lower than before the surgery. We saw pictures of what her hip looked like inside and it was a mess. The area that was filled with nerve endings was inflamed and frayed. The surgeon cauterized and shaved the tendon thus destroying the painful area.
All of this occurred up at the Cleveland Clinic. This place is huge! There are 3 hotels on the at least 29 block campus. In one area it looked like a mall with shops and restaurants. The day before surgery I think we walked the entire place trying to get all the tests completed so she could be cleared for surgery.
Elizabeth did stay over night after the surgery and I am very happy she did so. She spent most of the day after the surgery sick to her stomach. The surgeon said that he could not remember the last time he had an arthroscopic patient stay over the night, but it would have been a nightmare with 3 kids in the car and a 6 hour drive and having to stop while she got sick on the way.
The best thing about the surgery is that it has given Elizabeth hope. She now understands that pain is not a permanent part of her life. Sure, there will probably be times that she has pain, but it is not a constant. "Hope is a very dangerous thing!" (I can't remember the movie, but I like the quote)
All of this occurred up at the Cleveland Clinic. This place is huge! There are 3 hotels on the at least 29 block campus. In one area it looked like a mall with shops and restaurants. The day before surgery I think we walked the entire place trying to get all the tests completed so she could be cleared for surgery.
Elizabeth did stay over night after the surgery and I am very happy she did so. She spent most of the day after the surgery sick to her stomach. The surgeon said that he could not remember the last time he had an arthroscopic patient stay over the night, but it would have been a nightmare with 3 kids in the car and a 6 hour drive and having to stop while she got sick on the way.
The best thing about the surgery is that it has given Elizabeth hope. She now understands that pain is not a permanent part of her life. Sure, there will probably be times that she has pain, but it is not a constant. "Hope is a very dangerous thing!" (I can't remember the movie, but I like the quote)
Thursday, July 14, 2011
Elizabeth is Human
We are now a week away from Elizabeth's hip surgery. She is very afraid and is having difficulty expressing it. I think she thinks that she needs to be strong all of the time. We compliment her on how strong she is and even said that she was, "freakishly sane" for a 13 year old. She apparently is so upset by her surgery that she developed a "conversion disorder". This disorder is apparently common amongst people that have chronic illness. When the heart cannot express what it is feeling, those feelings are converted into a physical symptom, such as numbness, inability to talk or hear that otherwise has no physical reason for the symptom. The people with conversion disorders are unaware that the symptoms are not real.
Elizabeth is so strong and does not show her emotions freely to anyone. I think she is afraid to let herself go because she worries about everyone. She told us that she was afraid to express her sadness or fear because it would "make everyone feel badly."
I feel so badly for her right now that we have such an atmosphere in our family. I feel mostly to blame as it was my inherited disease and I am the one that I think she wants to protect the most. I also proclaim my faith and I think she needs to do the same. But her faith is different than mine and it needs to be developed over time. We reminded her that she is human and it is okay to cry and be scared. I think I cried every day when I was 13 and I didn't have nearly the stuff going on that she does!
It is really hard to know what to do in this situation so we are turning to a psychologist for this one. Of course the really good doctors do not accept insurance. Not that money should deter us from helping her, but it is a big pill to swallow.
I do hope that she is able to find some peace through this process and maybe everyone could be helped.
Also, this is a very sensitive subject, so please do not mention it in front of the kids. Thanks!
Elizabeth is so strong and does not show her emotions freely to anyone. I think she is afraid to let herself go because she worries about everyone. She told us that she was afraid to express her sadness or fear because it would "make everyone feel badly."
I feel so badly for her right now that we have such an atmosphere in our family. I feel mostly to blame as it was my inherited disease and I am the one that I think she wants to protect the most. I also proclaim my faith and I think she needs to do the same. But her faith is different than mine and it needs to be developed over time. We reminded her that she is human and it is okay to cry and be scared. I think I cried every day when I was 13 and I didn't have nearly the stuff going on that she does!
It is really hard to know what to do in this situation so we are turning to a psychologist for this one. Of course the really good doctors do not accept insurance. Not that money should deter us from helping her, but it is a big pill to swallow.
I do hope that she is able to find some peace through this process and maybe everyone could be helped.
Also, this is a very sensitive subject, so please do not mention it in front of the kids. Thanks!
Erica is Doing Better
Erica is doing a little better. I don't think she realizes it, but she is not complaining as much and she is not so dramatic at bed time. She is also doing more for a long time. I think this is directly linked to prayer. I thank everyone who prayed for her. I just have to convince her that she is doing better and to remember this time. Do I believe this is a complete healing? No. I had to come into her bedroom last night because she was in pain. She does not even remember me rubbing her back. I hope this is the start of a good period for her.
Sunday, July 3, 2011
My Yoke is Easy...
When is this all going to end?! We have lived in crisis mode for so long, almost 3 years, and I cannot take it! Right now my grandma is in the hospital with staff and MRSA. She had to have emergency surgery a couple of days ago to get the infection out of her knee. Being 91 with diabetes, I do wonder what God's will is for her.
My mom has not felt well enough to leave the house lately because of a major headache and sinus infection. She does not feel well enough to even go to the grocery store.
Elizabeth is unable to walk because her hip is "out" again. The doctors think that the tendon in her hip that is torn gets caught between the bones. It usually takes a couple of days for this to resolve for her. To top it off, she broke her ankle on that side. She is going to have surgery at the Cleveland Clinic at the end of July for her hip. Hopefully this will be the beginning of the end of her hip problems.
Erica continues to have back pain. At night her pain has been so bad that she begs to go to the hospital or heaven. We are still waiting to hear about her back. She has had testing done and a visit with the neurosurgeon and still no news on if she needs to have surgery for a tethered cord. If she does have this condition, then she will undergo a minor surgery that could get her out of pain.
I have been in so much pain that I cry every morning getting out of bed. My lower back is so bad that I cannot bend over for about 2 hours. The medicine I take kicks in and I can finally get around. The stress I am sure does not help. I really need to get over it.
While I was praying for Erica I got so upset about the outcome that I felt convicted by God. "I have plans to prosper you not to harm you, plans to give you hope and a future." (Jeremiah 29:11) God will be with us no matter what the outcome will be, surgery or no surgery.
I praise God that he continues to bless us as we are in this storm. Just as I feel like my strength is giving out, I am reminded that it is not my strength, but God's that gets us through. In today's Gospel, "My yoke is easy and my burden is light." Please help me lay down my burdens and take up the yoke of Jesus.
My mom has not felt well enough to leave the house lately because of a major headache and sinus infection. She does not feel well enough to even go to the grocery store.
Elizabeth is unable to walk because her hip is "out" again. The doctors think that the tendon in her hip that is torn gets caught between the bones. It usually takes a couple of days for this to resolve for her. To top it off, she broke her ankle on that side. She is going to have surgery at the Cleveland Clinic at the end of July for her hip. Hopefully this will be the beginning of the end of her hip problems.
Erica continues to have back pain. At night her pain has been so bad that she begs to go to the hospital or heaven. We are still waiting to hear about her back. She has had testing done and a visit with the neurosurgeon and still no news on if she needs to have surgery for a tethered cord. If she does have this condition, then she will undergo a minor surgery that could get her out of pain.
I have been in so much pain that I cry every morning getting out of bed. My lower back is so bad that I cannot bend over for about 2 hours. The medicine I take kicks in and I can finally get around. The stress I am sure does not help. I really need to get over it.
While I was praying for Erica I got so upset about the outcome that I felt convicted by God. "I have plans to prosper you not to harm you, plans to give you hope and a future." (Jeremiah 29:11) God will be with us no matter what the outcome will be, surgery or no surgery.
I praise God that he continues to bless us as we are in this storm. Just as I feel like my strength is giving out, I am reminded that it is not my strength, but God's that gets us through. In today's Gospel, "My yoke is easy and my burden is light." Please help me lay down my burdens and take up the yoke of Jesus.
Monday, June 27, 2011
Give me Strength
My anxiety has been so high, sometimes I feel like it is hard to breath. We are waiting to hear when Elizabeth's surgery will take place up at the Cleveland Clinic. All while Erica has been going through testing to see if she has a tethered cord. My mom has not been feeling well and my grandmother is hurt and not doing well either. I have been in so much pain when I wake up my back hurts so bad that I have to take medicine before I can move.
Please don't take this as I am unappreciative of all the blessings that have rained down upon us. I know that it is not right to be anxious right now as God has shown that He is right here with us, but I cannot grab a hold of that hope right now. I am not sure why while I know things on such a high spiritual level, yet these struggles still bring me to my knees doubting everything I believe.
I guess I would love to see my kids out of pain, but I am not sure that this is God's will. How do I deal with this reality? Am I able to praise Him while my kids are in agony? I do praise Him because I know that in the end all things will turn out for the best. All things will turn out to glorify God. Please give me the peace and strength to handle what he gives us. Please strengthen my children and family as well.
Please don't take this as I am unappreciative of all the blessings that have rained down upon us. I know that it is not right to be anxious right now as God has shown that He is right here with us, but I cannot grab a hold of that hope right now. I am not sure why while I know things on such a high spiritual level, yet these struggles still bring me to my knees doubting everything I believe.
I guess I would love to see my kids out of pain, but I am not sure that this is God's will. How do I deal with this reality? Am I able to praise Him while my kids are in agony? I do praise Him because I know that in the end all things will turn out for the best. All things will turn out to glorify God. Please give me the peace and strength to handle what he gives us. Please strengthen my children and family as well.
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