Avri went in for her high resolution CT scan at 6am. Nero surgery came in at around 7am and said "her right ventricle did not go down at all after opening the valve up last night. This means without a doubt her right shunt is not working at all and needs to be replaced already. They are saying the spot where the main catheter is sitting inside the ventricle in her brain is no longer a good spot, so they are going to move the whole thing. Retracting the entire existing unit is move evasive and risky than just replacing clogged valves but hopefully it will prevent the same thing from happening that just happened. Her last shunt valve worked for a few days before it clogged up.
Her surgery will be some time late morning. I know their are a lot of people wondering what they can do. Just keep her in your prayers, Sarah has all the other kids and I am not leaving here without Avri, so that does not leave much else. I have to thank everyone for the meals and treats over the last week it takes a load off for sure, and has been greatly appreciated. Hopefully this will go great and we will be home tomorrow afternoon.
Avri was born in 1997 with congenital hydrocephalus. She currently has 2 vp shunts. This is a blog about a girl who has every thing stacked against her. The doctors said she should not live. This is for inspiration to anyone who has ever been told it is not possible. This is all about Avri's struggles and triumphs!
Thursday, March 24, 2011
Wednesday, March 23, 2011
The Grand Plan!
Avri did end up getting another ct scan and x-rays. One of her ventricals in her brain is bigger. The nero team decided to turn her presure down this time. Turning it down will make her dump all her cs fluid if her shunt is working properly. If it is not working properly her ventrical will still look big in the morning. If her ventrical is still big then she will go in for surgery just on that one side. So she has to lay flat all night...She is going to be happy when they put that bed pan under her! They also beleive that she has been getting plugged and then unplugging on her own for the last 6 years and that the spot where the shunt is sitting in her brain is no longer a good spot. They are doing some special high resolution ct scan in the morning so if they do end up doing surgery they can take the scan in the O.R. with them and it will act as a GPS to place the shunt in a diffrent spot.
In the morning if her ventrical have actually gone down then they are going to turn that side back up and turn the other side down and wait a day and see what that side does. So in the grand plan ...We are stuck up here for at least 2 more days either for brain studies or surgery or both.
If neither of these studies tell us anything then we are in for a world of hurt I am afraid. There is a migrain condition the doctor mentioned but he does not even want to go there until we know. So as bad as the first plan may sound we are crossing our fingers we don't go to senario 3.
Avri is doing better than she was when we got here. Her heart rate remains a concern but her headache has subsided on its own. (or transfered to my head?) On a funny note. The nurse came in and asked if we knew Avri's exact height. I said "no" I think I do but I don't trust what I think right now. Anyways....Avri said "well do you know how tall Mr Lindberg is??? Because I am taller than him" I may be the only one who finds that funny because I know her teacher and I am also tired.
In the morning if her ventrical have actually gone down then they are going to turn that side back up and turn the other side down and wait a day and see what that side does. So in the grand plan ...We are stuck up here for at least 2 more days either for brain studies or surgery or both.
If neither of these studies tell us anything then we are in for a world of hurt I am afraid. There is a migrain condition the doctor mentioned but he does not even want to go there until we know. So as bad as the first plan may sound we are crossing our fingers we don't go to senario 3.
Avri is doing better than she was when we got here. Her heart rate remains a concern but her headache has subsided on its own. (or transfered to my head?) On a funny note. The nurse came in and asked if we knew Avri's exact height. I said "no" I think I do but I don't trust what I think right now. Anyways....Avri said "well do you know how tall Mr Lindberg is??? Because I am taller than him" I may be the only one who finds that funny because I know her teacher and I am also tired.
Enough Is Enough!
We gave it our best. The nero surgeons wanted us to wait until tomorrow but Avri's head is saying otherwise. Avri began throwing up at about 4pm and was crying because her head hurt so bad. She threw up again around 5pm. I can't just hang out all night and watch her twist in pain. I decided to call the hospital and get the resident on call on the phone and ask him if they wanted us to wait until tomorrow he needed to call her in a few loratabs to get her through the night. This is not a resident that saw us at all this weekend, but he knew the whole entire case. He asked me why I did not just bring her to the ER. I explained to him that the two nero surgeons made me feel like an idiot and said give it time. They said I was not giving her time to adjust to the pressure changes in her head. He seemed very concerned and had a tone to his voice of great frustration. (he gave me the impression that he did not think she should have been sent home in the first place)
He said I should just get her up here.
So I took a quick shower (as I had been watching her all day and had not had a chance) I packed a couple days worth of stuff for me and Avri. Then I Sent all my other kids over to there other mother : ) I am fast it takes me under 30 minutes to get to the point of leaving the house. In this small time frame Avri has rapidly gone down hill. I help steady her to get her to the car. I walk her out the door and she just stands there. I Say "come on Avri" She half yells like a drunk lady " I can't see" as she takes a step and totally misses the first stair on the steps. At that point Matt comes over and helps get her down the stairs and into the car. She immediately goes into a deep sleep.
we arrive to a full waiting room and hospital. Avri is in serious enough condition that she is taken back to the trauma room but instead of them sending her back out to wait her turn they took her straight back to a room. Her blood pressure was low and her pulse was 54.
Doctors have come in and she is obviously not in good shape. They at this moment are thinking she is just going in for surgery for double shunt revisions. They would like to avoid any more radiation with scans and just fix an obvious problem.
We have not talked to the all knowings yet, so they could have a completely different vision for her.
He said I should just get her up here.
So I took a quick shower (as I had been watching her all day and had not had a chance) I packed a couple days worth of stuff for me and Avri. Then I Sent all my other kids over to there other mother : ) I am fast it takes me under 30 minutes to get to the point of leaving the house. In this small time frame Avri has rapidly gone down hill. I help steady her to get her to the car. I walk her out the door and she just stands there. I Say "come on Avri" She half yells like a drunk lady " I can't see" as she takes a step and totally misses the first stair on the steps. At that point Matt comes over and helps get her down the stairs and into the car. She immediately goes into a deep sleep.
we arrive to a full waiting room and hospital. Avri is in serious enough condition that she is taken back to the trauma room but instead of them sending her back out to wait her turn they took her straight back to a room. Her blood pressure was low and her pulse was 54.
Doctors have come in and she is obviously not in good shape. They at this moment are thinking she is just going in for surgery for double shunt revisions. They would like to avoid any more radiation with scans and just fix an obvious problem.
We have not talked to the all knowings yet, so they could have a completely different vision for her.
Avris first 8 years.
I wanted To put a movie on here of all of Avri's triumps but they don't seem like triumps with out seeing the struggles first.
Wednesdays Update!
We started off with a really good day. Avri got up and wanted to eat and talk with everyone. She was complaining because she wanted to go to school or some where. She ate breakfast had a bath. She made a few phone calls, sent out some text messages. She was watching TV and all the sudden popped up started her huffing and puffing and said she needed to go some where quiet because she had a headache. All I can say is I better get some answers tomorrow!
Tuesday, March 22, 2011
Why take time to read this blog?
I have to explain something as I have seen how many people have read this blog. I realized people that really don't know me or my family are reading this blog. I had a conversation with some one around the time that I started this blog about a child that was not doing well. The doctors were offering no hope to this child in any way. The picture painted for the life of the child was very discouraging. It angers and confuses me at these types of things because I have personally witnessed Avri's life in which according to doctors was not meant to be. For any one who did not read from the beginning. I was told to let Avri die. She had no hope for any future. She had to much damage to live to be more than a vegetable. I was also 19 just graduated high school and single. This was going to ruin my life (according to doctors).
I am not writing this blog for any sympathy, I do not need it! I am not writing for money or attention, I do not need that either! I am writing this because if there is one person out there that is discouraged because of some lack of hope given to them for any reason and I can offer insight that things can be different then it gives all the pain and suffering Avri has to go through in order to survive a purpose. It does not seem fair to take an innocent baby and give them some affliction that they will go through for the rest of their life just to help others. The concept of this my seem twisted to some of you readers, but I have to find purpose in this so I can live and not be bitter. Avri does not complain, she dose not ask why, she has never talked a mean word to anyone in her life. She is an example of pure love a true Christ like attribute. She also does not have the ability to express herself to others or to make her purpose heard. I feel like as her mother and greatest voice it is my calling to not only take care of her and protect her but to reach out and give all her suffering a purpose.
Avri has done so good for the last almost 6 years. Our family was helping out with foster care and ended up adopting 2 boys. Avri's issues stopped the minute our first boy came into our life. He was a handful and he still struggles. We got our second boy just a few months after our first. This whole process with our boy's was an emotional struggle for all of us. I honestly do not know if I could have gone through with the whole process if I had to care for Avri at the same time. These boys would not have gotten the care and attention they deserved either. We have had time to make some roots with them and create the bond we all needed. I can say though going through this all again after such a long period of time "I do not miss the illness, but I have missed the quality of thought" I get so busy with just life and I get in my routine though it includes prayer and spiritual growth it is nothing like the faith and thought put into a suffering child of your own.
I was talking to my dad last night on the phone and he said "you will be so blessed one day for all this" I told him "we are already so blessed" Don't get me wrong times like this are so hard and believe me I have said this is so unfair and I have been angry, but I can also honestly say unless you have gone through what we have you will never in a life time get to feel the true love of Christ as I have, and have an honest to goodness understanding of the sacrifice of the only begotten son of God. It kills me to sit back and watch Avri suffer the way she has and is does not compare to Christs suffering the difference is I am helpless, God was not. The love for all man kind he must have had to not reach out and strike the people who tortured his son is not even comprehensible to me. It is easy to forget all these things. I feel honored to have such a special spirit in my care. I would not be me without her.
My point is...don't find sadness in her story. Let this give you strength to be better. Reach for the higher goals in life and know they are possible. Don't read my posts and think of what you can do for Avri or my family (we appreciate the prayers) but think of what you can do to improve your own life through her example. If you can improve yourself in anyway because of her story you have added more purpose to her life's trails and make what she is suffering through all worth it.
Anyone who does know Avri also knows her life is not always pain and suffering. She has more good days than bad. Her life is very full. I intend to keep up with this blog and post her triumphs as well. I wanted to start out from the beginning so the days that I post "my 14 year old daughter just advanced to the second grade reading level" you will understand why this is a huge accomplishment for her.
I am not writing this blog for any sympathy, I do not need it! I am not writing for money or attention, I do not need that either! I am writing this because if there is one person out there that is discouraged because of some lack of hope given to them for any reason and I can offer insight that things can be different then it gives all the pain and suffering Avri has to go through in order to survive a purpose. It does not seem fair to take an innocent baby and give them some affliction that they will go through for the rest of their life just to help others. The concept of this my seem twisted to some of you readers, but I have to find purpose in this so I can live and not be bitter. Avri does not complain, she dose not ask why, she has never talked a mean word to anyone in her life. She is an example of pure love a true Christ like attribute. She also does not have the ability to express herself to others or to make her purpose heard. I feel like as her mother and greatest voice it is my calling to not only take care of her and protect her but to reach out and give all her suffering a purpose.
Avri has done so good for the last almost 6 years. Our family was helping out with foster care and ended up adopting 2 boys. Avri's issues stopped the minute our first boy came into our life. He was a handful and he still struggles. We got our second boy just a few months after our first. This whole process with our boy's was an emotional struggle for all of us. I honestly do not know if I could have gone through with the whole process if I had to care for Avri at the same time. These boys would not have gotten the care and attention they deserved either. We have had time to make some roots with them and create the bond we all needed. I can say though going through this all again after such a long period of time "I do not miss the illness, but I have missed the quality of thought" I get so busy with just life and I get in my routine though it includes prayer and spiritual growth it is nothing like the faith and thought put into a suffering child of your own.
I was talking to my dad last night on the phone and he said "you will be so blessed one day for all this" I told him "we are already so blessed" Don't get me wrong times like this are so hard and believe me I have said this is so unfair and I have been angry, but I can also honestly say unless you have gone through what we have you will never in a life time get to feel the true love of Christ as I have, and have an honest to goodness understanding of the sacrifice of the only begotten son of God. It kills me to sit back and watch Avri suffer the way she has and is does not compare to Christs suffering the difference is I am helpless, God was not. The love for all man kind he must have had to not reach out and strike the people who tortured his son is not even comprehensible to me. It is easy to forget all these things. I feel honored to have such a special spirit in my care. I would not be me without her.
My point is...don't find sadness in her story. Let this give you strength to be better. Reach for the higher goals in life and know they are possible. Don't read my posts and think of what you can do for Avri or my family (we appreciate the prayers) but think of what you can do to improve your own life through her example. If you can improve yourself in anyway because of her story you have added more purpose to her life's trails and make what she is suffering through all worth it.
Anyone who does know Avri also knows her life is not always pain and suffering. She has more good days than bad. Her life is very full. I intend to keep up with this blog and post her triumphs as well. I wanted to start out from the beginning so the days that I post "my 14 year old daughter just advanced to the second grade reading level" you will understand why this is a huge accomplishment for her.
24 hours at home!
We got home yesterday around 3pm. Avri was glad to come home. For Matt and I it is scary, but it is always nice to be in the comfort of your own home. Avri has been a little more chipper and whiling to talk to people. She had a couple of her teacher aides stop in and see her. (I like to think of them as her second family) she is with them more than she is me. She loves them both so much. She was glad to see them, but after the second visit she crashed. She wanted quiet again. She gets to breathing hard and huffing and puffing enough that I can hear her from the TV room. Her head ache is back. It is no where near as bad but there to say the least. She either had a restful night or I slept way harder than usual. First thing waking I had to give her more ibuprofen for her headache again. She continues to just want to sleep. One of my best friends and neighbors insisted on bring over lunch and brought Avri upon request an oreo shake. Avri perked up enough to say hi and to take a bite of the shake but the minute she left Avri fell right back to sleep. I am very concerned about the situation but I am going to follow doctors orders and keep her here comfortable and flat until Thursday if I can. If she is not better by Thursday the boxing gloves are coming out.
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