She's still going strong!

            Avri is doing so good. I am so amazed at the instant difference when her shunts get blocked and then are fixed again. She would love more than anything to be back at school, but I am enjoying spending this time with her.  Most of the time when I see her the rest of the kids are home as well and is all shared time. The one on one has been very renewing for me.  I think it has been very insightful for her as well. She has been following me around and helping where she can. Yesterday she said "mom! Is this what you do all day everyday, is just clean the house?"  Later on in the afternoon she asks, "Mom is Tallon like this all day?" Me " Yes Avri Pretty much" Avri  "I feel sorry for you!" She must think that I relax all day and all heck breaks loose when she comes home. .  I never thought of the way the kids all see me. They are all so use to being home with all 6 kids that they don't see much of me except for the busy mom in a loud house.  I have seen a new side of Avri and I think she has seen a very different side of me.  I am all caught up on the things that fell behind while I was not here, so we can spend some more quality time together now. I honestly just wanted to get back to my schedule and felt put out that she was going to be home for these 2 weeks , but I have a feeling I am going to have a hard time sending her back now. She is a breath of fresh air to me.
            I got on my treadmill Monday and then on Tuesday when I got on it she just stood there and watched me, so I finally asked her if she wanted to get on. She said "yes". She walked an entire mile on an incline of 2. Not bad for being sick as long as she has been.  So we made a deal that we would both put in our time with the treadmill and today she was the first one on. She did not last as long. She was less than a quarter short so I told her she should go for the mile. I turned the speed down and the incline and she was able to finish.   She gave me the strength to run a exhausting 11 minute mile which is pretty good considering I have not been running, but I figure that mile for her today walking was pretty close to my mile of running.
            She was able to soak in the bath after wards and I finally got to wash her hair. The water was so orange from all the blood and antiseptic. I had to change the water to rinse her off.  I think just getting that hair of her washed made her feel ten times better.  She has her glow back!
              

Still going strong!

            Avri is still doing good. She is up and alert, trying to be mom and asking what she can do. This is the first time in her life I have come home with a prescription for pain control. I was shocked when I saw a full bottle. I just assumed it would be 2 or 3 pills to get her through yesterday. The surgeon said she was going to be in a little more pain than usual because of the new hole in her scull and the infection was going to make her uncomfortable. She is insisting that she dose not need any pain medication....She is a tuff cookie!  I made her take one last night before bed because in the case that she is lying, so she dose not have to go back to the hospital. I would sleep better knowing she was not in pain. She is still not showing any side effects from this infection they say she has. I am still questioning weather the test was contaminated or something. Still going to follow protocol, but this girl is ready to go back to school and it going to have a very ruff next 2 weeks staying home. It is hard for her to understand when she feels good.
          I told Matt yesterday, I have just been hanging out at the hospital and I feel like I have to recuperate from something big. Funny how the mind works. He said he felt the same. I guess we are probley both just exhausted from lack of sleep but the worry must drain us. We have also both come down with colds. Matts is much worse than mine, but we both feel like we will never be caught back up on the missed sleep. All the other kids are just glad we are all home. Situations like this sure do make the family bonds stronger. The kids all just want to play together and include everyone. They have all gone out of their way to clean up and lighten my load as much as possible. I had to ask my little Abby to sit down with me last night as it was 10:00pm and she was just cleaning away. She kept asking what else she could do for me and I would tell her to just relax. She would find something else. She went as far as getting on her hands and knees to scrub the kitchen floor. I must be doing something right because I have an amazing set of kids. I also have amazing friends, family and neighbors....Thank you so much for all the help and support.

Lets see if we can stay home this time.

            We brought Avri home today. She slept peacefully last night. She had a CT scan and shunt series today. Everything looks great. She had a nice big breakfast and was able to hold it all down.  We were discharged and are now home.  Infection and disease control said we had to keep her home from school until her antibiotic course is over (which is 2 weeks) I am so not convinced that she has this c-dif that they are so concerned about but I will follow the precautions just in case.  Hopefully this is the end for a long, long time. Thanks to everyone who has helped out and supported us through all this.

She is out of Surgery!

           I just got a call from the surgeon. I am still sitting in the surgery waiting room. He said the surgery went good. The right shunt was totally blocked. He  used a new GPS system called the stealth guide to get a better position inside the ventricle. He ended up moving the sight down about a centimeter, so he had to drill a new hole in the scull and put in a  whole new system.   She will be in recovery for about 30 minutes before they call me down to see her.

She is really going in for surgery now.

           Around 10:00pm Avri started up with another head ache. She was miserable all night. She ended up getting loratab and zofran again to help keep her more comfortable. The attending nero surgeon was finally able to see her at almost her worse today during rounds. He ordered another CT (which showed bigger ventricles) We are just waiting for them to come get her. She will have her right shunt fixed and repositioned. 
          Another development...Yesterday they were still concerned about her bowels. I told them she said she had a bowel movement, but they said she may not be on the neurological level to know that for sure. It was totally ridicules but they ended up giving her a suppository and an enema anyways (just to rule it out) . So then they decided to take a sample once she started going. (because it was pure water) I was thinking what do you expect? So I wake up with a no contact order on the door (anyone who comes in the room has to wear gloves). They say she contracted CDIFF (some kind of bacterial infection)  They said that she just barely got it because she is not showing signs yet other than the runny stool (which is their fault)  but warned me that she was going to get really sick. They are going to have to treat her with a 14 day course of antibiotics to treat it.  This infection does not effect her surgery at all it is just another issue we get to deal with.  In the whole picture in my mind...if they would have treated her shunt issues a few days ago she would not be dealing with this infection now.        

Just hanging out in limbo!

            The situation is that Avri is feeling great again. I am OK with this (her feeling better) but the yoyoing is killing me. The surgeon came in and talked to Matt while I drove the kids home and he basically said he would take her back right now and fix the shunt because they know it is not working, but It could just be blood working its way through and that it could resolve its self.  The nero surgeon said that it would be on us if nothing was wrong or if something went wrong though because surgery is against his recommendation. ...So what parent wants that decision to be on them?  I am so confused at all this and all the opinions of everyone  and Avri being fine one minute and in serious condition the next.  I am in no condition to make any decisions right now.   so she is eating and up. They are NPOing her again at midnight and going to make a decision again in the morning.
            The hospital has these therapy dogs that go around and visit the kids. This dog was so cool. He laid on the bed with Avri and when it was time to go the trainer said" Pray for Avri" the dog sat by the bed put his paws on the bed, put his head down and barked twice.

I am going to rip someones head off in a minute.

            The nero surgeon just came in to see Avri before surgery. She was smiling at him as he was talking to her, and was able to answer his questions. Any of you that know Avri this is not unusual for her. She will smile up until the minute she throws up on you!
             He said "he was not doing surgery on her "...."she looks to good"  He totally discounted the way she has looked and everything else that has gone on. He wants to look at her again this afternoon and see how she feels. She is still NPO orders though. If she looks good at lunch time then they will just feed her and wait and see how she is until tomorrow.  I have a very angry nurse and a couple residents seem to be frustrated as well.  So much for the plan and the results. If they don't come up with some thing and stop doing CT scans and xrays, we are going to be dealing with cancer or extra body parts because of all the radiation.  Welcome to our roller coaster ride!   If I was the swearing type this post would have an advisory for language on it right now.

She's going in for her 25 shunt revision/brain surgery

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.

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.

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.

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!

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.

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.

We are going home!

We have been released. I asked if I could get a straight answer from some one before we left on what was going on because the fact that she was great for the week following her surgery then went down hill makes no sense to me. The nero team said her pressures were just not being tolerated but they were tolerated for a week just fine. I asked this question several times and never got an answer. My question was redirected and avoided. So nero called me on the phone as per the pediatric doctors because I am not confident about taking her home. I finally got a straight answer. No one knows what is going on. Nero surgery is very confused, they are not confident in any part of this case either. She said that they want her to lay flat for 3 days and then come back on Thursday and they will scan her and go from there unless she dips again. They just don't want to open her up if she is coming back out of whatever stoop she was in.
I told them I would rather them tell me they are confused with me rather than avoiding me and trying to act like they know what is going on because I don't buy the act. Dont get me wrong, i would much rather be in the comfort of my own home than here any day!

Things are looking up on the outside!

Nero surgery came around and decided it was best to hold off on surgery. Avri is being persistent that she dose not have a head ache any more. She is still extremely tired. We are being pulled a couple different directions here. I had some one say sit her up ... another say no lay her down (keep her flat) One comes in and says lets get you showered and get you out of here. I am saying all she has had since yesterday morning is 4 ounces of sprite. Can we at least put something in her and see if it stays before we kick her out the door. She just barely finished a light lunch. She was able to sit up and finish everything but wanted to lay right back down. She is more alert and talking to people more. She is responsive. Her heart rate is up and more stable. She has more color to her face. We technically are not on nero surgery's service, we are on pediatrics service...so we are now waiting to see what they have to say about everything. The scariest thing to me is that no one that is talking to me about Avri's care and the plan is confident in what they are deciding.
I can't help but think of the smile on the residents face on morning rounds. I am wondering if he thinks the round of laxatives, suppository, and enema was the answer. If he only knew the night nurses refused to do it and just left it alone. They were all talking about how when these guys don't have the answer they order an enema. I find it unsettling that these nurses don't respect the nero surgeons enough to defend the decisions they are making about my child's care. I have heard be persistent and so much uncertainty this visit than ever before. In my mind the nurses should be saying "these guys know what they are doing trust in their plan"

3-21-2011 ???

We are all spinning in circles again. Avri woke up feeling fine today. Right before midnight the nurse gave her 2 loratabs because she was going npo and she wanted her to be comfortable up until the surgery. She also gave her more zophran. So at the moment we have all the doctors standing around scratching their heads.
I don't know if I should just have faith and know all the prayers were heard or if I should lean more towards Avri is lying because she does not want to go back into surgery. As quick as she says she is fine with a small smile on her face, she falls back to sleep. As for the plan for today...It sounds like they are going to watch her and see what happens.

Living in the mind of a Nero surgeon.

I don't think I will ever truly know how these guys work. Avri has not shown any sign of getting better since we arrived here at the hospital. In fact she has gotten much worse. She has not ate since we got here and she has to be asked to just take a sip of her drink. She threw up around eleven and I made a comment that more was coming out than what she was drinking and no one said anything. Ok not a big deal. Just weird.
On top of all other worries. When Avri stands up to go to the bathroom she becomes extremely dizzy. She is already pale but any color at all she may have had leaves. She starts breathing really hard and it becomes a race to get her back in bed. So tonight when we get her back in bed her heart rate drops to 50. Now I am no doctor but this really alarmed the nurses and they called nero surgery. They are thinking we need to get her down to surgery and get her fixed. well nero surgery calls back and says as long as it goes back up when she moves just keep watching it and moving her. GREAT! I could tell the nurse was worried and that was not what she wanted to hear. These nurses are really worried which in turn worries me. Some times I just sit here and watch her monitors and her heart rate normally sits around 80 to 105. It is not steady by any means but 50 seems low. I guess 45 means they are (some big heart word I can't say let alone spell) it just sounds bad.
So then she throws up again. I say to the nurse that sure seems like alot more than she taking in. I asked if she was absorbing her IV fluids into her stomach then throwing some of that up to. Turns out she more than doubled her intake in her vomit. In looking back same thing from earlier. The nurses find this strange enough that it is all noted.
So the nero resident comes around (he is over seen by the attending so everything has to be approved through the attending) he looks over the recent events. Her vomiting and her heart rate. He wants to wait until morning to do anything as far as surgery goes. I am fine with that, I would like to give Avri just as much chance to recover on her own than to have to endure another surgery.
You will never guess what he orders...yep, lets give her a laxative drink and if that does nothing for her in 30 minutes lets give her a suppository. Ok Really ... well they say constipation can cause the same symptoms of shunt failure. I don't know why I have never read this or heard this but yet again I am not the doctor. So far no results and so he is thinking lets give her an enema and see if that clears her up. Now I am not sure how this doctor went from shunt malfunction to ruling out a very life treating case of constipation, but there you have it ...a glance into the mind of these brilliant doctors!

March 20th 2011 Here we go again!

Friday morning Avri called me from school and asked me if I would bring her some ibuprofen because she had a head ache. Matt brought it to her on his way out for work. Avris teacher told Matt how well she was doing and what a great difference he had seen in her since the surgery. He was not alone in his observations. I had also noticed the positive changes in her. It was about an hour and a half later that Mr Lindberg called me and said "Avri just came back from keyboarding and is upset because she could not see her text book" HOLY COW...RED FLAG. I have to say this was very scary news. I was having a hard time processing what he just said so I called back and asked for a few more details. I heard Avri in the back ground answer the question She said " Like I can see you (talking to Mr Lindberg) but I can't see small things ,like my book" I hung up and was immediately on the phone trying to find a baby sitter and leaving messages with nero surgery. I was thinking did something bleed in her brain. In all these years she has never complained of blurry vision. I dropped my youngest son off to a babysitter and left to pick up Avri. Nero surgery still had not called me back but this seemed to serious to sit on. As I was walking up to the doors at the school I got another call from her teacher saying " She is going down hill fast, she just wants to lay down and go to sleep" I got Avri in the car and we were off. I was almost to the 7200 exit when she began to throw up . I only had a small cup with me and it quickly over flowed. So I had her vomit into her blanket. It was everywhere. I got off the freeway and stopped at the first gas station. I have to say it was the cheveron right off 72nd. I ran in and a lady named Victoria was at the counter. I asked her if she had a couple sacks I could have for my vomiting daughter. She gave me some sacks and then said you can grab a couple rags out from under the sink. So I went and got some rags and was getting them wet. On my way out I noticed this nice lady was already on her way out to my car. She was getting Avri out and bringing her into the bathroom to help clean her up. This woman actually was washing her sleeves and hands that were covered in vomit. Something... I gag at and she is my own daughter. She gave us everything we needed to make it up to the hospital with no more accidents. She even took a pack of tissues off the self and said "here you might need these". I honestly have never in all our experiences had anyone step up like that (who is a complete stranger)and help out like that. I can say this is not the first time I have pulled into a gas station with vomit all over the place. This woman went so far out of her way for us.
So Avri's scans look pretty good. Is what we are told and they think her pressures may be set wrong. It made no sense to me that the pressure of her valves would not be set the same as what they were for the last 6 years but I am not the doctor. I did voice my opinion and when the resident came back he said they were going back to what she was at before. Avri's shunt valves are magnetic so all they have to do it stick this magnetic machine right over her valve and change it. He reset her and they released us.
Saturday Avri wakes up and tells me She feels much better. I am not believing her because she is white as a ghost but I can't force her to say differently. One big factor here is that this is my sisters wedding day. Avri and the rest of the kids have been looking forward to going. We missed the dinner the night before and Avri felt bad about that. So it was about 2pm. I was fixing Avris hair and she just started to cry. She said her head hurt. I asked her what she wanted to do and she said finish fixing my hair I want to go to Tara's wedding. So we are about 20 minutes from the wedding sight and Avri starts to throw up again. (I was prepared this time) We went in Avri tried so hard to just be a part of things. She was shaking and said her vision was blurry in and out. It was 5 minutes before she walked down the isle and Avri said "I can't take it any more, we have to go" I could see that look in her eye and bolted for the door. As soon as we stepped out, she began to throw up again. My family agreed to keep the girls at the wedding. The boys did not want to stay so the 5 of us left. My wonderful neighbor and friend took the boys. Matt and I took Avri back to the hospital. By the time we arrived Avri could barely stand on her own. I steadied her and helped her walk in. (somewhere in the process she took off her shoes so we no longer had shoes for her)
The conclusion here is that she was admitted. She has a killer headache that no amount of Tylenol and ibuprofen was touching. She is pretty out of it. She can not tolerate the noise. At this point she will not even sit up the pain is so bad for her. She can not hold down any liquids so she is relying on her iv fluids. She had a scan today and the ventricles are more enlarged but not enough to take her right back for surgery. She had a blessing and in faith I want to say that very moment they said no more pain just give the girl some loratab and zofran. She is more comfortable now. She is able to rest a bit anyways. They have her NPO after midnight because if she is not better by morning they are going to do surgery. We are holding on to the hope that it is all pressure changes but it is not likely. She more than likely has blood that clotted in the valves and has blocked the fluid from draining.
In explaining the time line to the doctor avri interrupted me when I said she said she felt better Saturday morning , She said " Mom I lied...I wanted to go to Tara's wedding so bad" She is the only person I know in the world that would suck it up just to go to a special event like that. In the end we missed the wedding but the other girls were there and she at least got to see Tara in her dress and wish her luck.

March 10th 2011 Blocked shunts.

I can not express my graditude for the last almost 6 years Avri has had with no shunt problems. She has not had any seizures and has been so healthy. It was this day that I noticed she was having small seizures again. She would seem fine and all the sudden she would go pale and start swallowing funny and zone out. She would have a strange, painful or smell something funny as it was happening and then she would be fine. She was becoming very agitatted over any noise. I also noticed she was repeating herself alot more than usual.
I called nero sugery and they said to bring her to the ER. Proto call was taken. They preform an xray to make sure the tubbing is all in tact and that her valves are still in palce and set where they are supose to be. Then they do a ct scan to look at the ventricals in the brain.
Nero surgery came in to deliver the results. Which were... The ventricals were big and her shunts needed to be replaced. They addmitted her to the hospital and took her in for surgery the next morning. Her left shunt had completely failed no fluid was get through at all. Her right side was stuck so they fixed it and replaced her valve. She came out of surgery in more pain than usual, but bounced back very fast and we were able to go home the next day.
We were home by 1pm. I had a neighbor that really wanted to come and see her. Avri felt so good that she saw her pull up and ran outside to greet her. A huge supirse to someone who knows Avri just had brain surgery. She came in and we talked. She was suprised at Avris strength and said she must have your high pain tolerance. I thought about that coment alot after she left and later told her I was not taking credit for any of Avris strength. I have been watching Avri for the last 14 years of her life. She had has 24 surgeries now. She over came staff infection in her brain. She bounces back and gets up and goes no matter what. How can I complain over my small pains when she gets up and goes over her big ones. She is my strength and my example. Everything I am I owe to her.

It has been a great 6 years!

I started this blog with the intention of helping others to see that even in the worse case senerios there is always hope. As a parent you always have to have faith that things can be better than what the profesional people tell you. Avris life proves this to be true.
Despite anything that I was ever told about how Avri would be, she had a good normal 6 years of life before the seizure and prolonged presure on her brain. Since that time she is still in her life skills class. She has learned how to do things that doctors said were not possiable. For instance her two lobes of her brain do not comunicate at all. He brain anatomy is not normal at all. I was told that her left to right brain motions would never work. Such as swimming or riding a bike. IT has taken longer than most kids, but she is getting there. On a good day Avri can ride a bike. On any day Avri is an excellent swimmer. I was told never to let her swim one because of her risk of seizure in the water, but also that she would not ever get the right to left brain motions it would take to swim. One of Avris favorite things to do is go swimming. She is now in JR High and last year participated in the special ed track team. She participated in ever single event. She ran the races with a smile on her face and laughed at her clumsyness. She also played in the special olympics volly ball games. So far this year she once again played on the volly ball team. Although they do get to stand closer to the net but she served 4 points in a row durring one game. Such small things are some of the proudest moments in my life. I can not explain the joy she brings to my life and to the life of others.

2006 Staff infection in her brain!

It is February 2006. My daughter has just been urgently wheeled out of her hospital room to go have her shunts that were just placed the day before taken out. This all developed so rapidly no one had even talked to me yet.
I had been so strong up to this point. I cried here and there but never once lost faith that Avri would pull through and be ok. I knew that this was her plan. I believe that before we came to earth we both made the decision to go through this together. I often think that she loved me so much and knew I would be weak that she made the sacrifice to keep me in line. It is very hard though in the moment to always remember this and to let it give me comfort. So I locked myself in her bathroom and I cried and cried. I remember a social worker coming to the door and knocking asking if she could talk to me. I don't remember any thing I said to her if I said anything at all. I do remember thinking staff infection in her brain. This could be it, I could lose her. I was not praying but I was thinking in terms of a higher power must be listening to my thoughts. I thought " I can handle anything you throw at me, I can make an example of it and let it strengthen my faith and try to strengthen others, but I can not handle loosing her" "do what you want to me but don't take my girl, not now" There was not a thing anyone could have said to comfort me at this point in my life other than to say there was some mistake. I was angry and I was confused and more than anything I was scared to death. I was so scared that I had 3 other kids at home to take care of and all I could picture was me lying on Avris grave dying right along with her. I did not feel like I could go on even with all the love of my other kids without Avri.
Avri came out of surgery about an hour later. They had shaved her head, and I was in awe at how beautiful she looked. She was glowing. She looked so peaceful. She had the external drains in once again. The surgeon explained that she had a high fever and that her fluid was cultured and she had staff infection. It was a very resistant bad strand but they caught it right away so they felt good about her outcome. She would have to stay in the hospital for 2 weeks just to have IV antibiotics and then they would be able to put her shunts back in.
I think the two weeks was very full of sleepless nights because I do not remember much about it. Avri really struggled. She became so depressed sitting here every day. We had so many people rallying around her trying to cheer her up and keep her in good spirits. she was very upset that they had shaved her hair. We had fun colors of wigs sent and tons of very cute hats. She had a quilt made with all her classmates pictures on it. Scrapbooks with pictures and notes were sent up. she loved it all but just wanted to be home. Matt and I juggled the kids and being up here some how. I do remember feeling closer to heavenly father than I ever had. I felt like he was with me and I was able to experience a fraction of what he went through watching his only son suffer. Avri would sleep for hours on end and wake with very spiritual dreams. She would talk about lost family members that she was never close to. It seemed at times I could feel spiritual presences at her side watching over her. Although it brought me great comfort I to wanted to get back to life.
Two weeks went by.The infection cleared up, not easily but it cleared. Avri had her two shunts placed back in her head. We were sent home the next day. She made a full recovery. She stayed on her seizure medications for a full year and against doctors orders I weaned her off the medications due to side effects. I always felt like it was not her lot in life to have seizures as well and it was because of the shunt failure that the seizure ever happened. I was right. She did not need the medication and was even better after the side effects of the medication went away.

Lets take the bandaide off!

It was about one year after all the seizures started and the other nerological issues Avri had started. I had called and finally got someone to listen to me, and she had already had her shunt replaced.
It was only about a week after her shunt replacment that we ended up back in the ER. Her nero surgeon came in and sat down with Matt and I. He said "so...we have kind of been putting a bandaid on Avri for the last 8 years" " Ican put the bandaid back on and send you home again or we can fix this", It is going to be a long process to fix it!" I was shocked. How could it be that I never knew this. I am the mother, I put on the bandaides. The doctors fix things. What the crap! EXPLAIN!!! He went on to say that he thinks she needed studies done to find out where the fluid was going and what was comunicating and what was not. He flet that there was more going on than just a blocked ventrical. He said it would entail taking out her shunt and her reservoir and putting external drains in her head so they could shoot colored dye in her brain and then do ct scans to see where the fluid went. Then come up with a plan and put in new shunts but before they could do that they had to wait for the fluid to drain clear becasue puttin gin the drains would cause bleeding and it would take a few days for it to clear up. He was thinking maybe two weeks in the hospital, but we would leave knowing what was going on and why. At this point we had been going through so much and felt it was fair to say Avri deserved to be fixed once and for all.
We chose to take the bandaid off and go for the permanent solution. The studies were very helpful. The ct scans showed that the comunication between the two lobes of Avris brain was non existent. They put the dye in one side and then had her lay on the other side for an hour to see where the dye ended up. Scans showed that is did not go anywhere. So they did the other side with the same results.
At this date in time Avri still had the reservoir in the one side of her brain because of the cyst that sat in the way of her ventrical. Enough time had gone by that the technology was now avaliable to remove the cyst. So that was the next step. Take the cyst out put in the external drain tube again and wait for the fluids to clear so they could put in a second shunt. Just so you know an external drain tube is a tube that they surgically put into the ventricals in the brain and then kind of sew it into her head and instead of it draining into her abdomin it comes out of her head and drains into a bag. They can then put dye or clamp it all from the out side and have instant access to her brain.
I had noticed one day while in the nero clinic that there was a new procedure they were doing with kids like Avri where they surgically went in and opened up the third ventrical. In doing this procedure the third ventrical took care of everything and there was no longer a need for the shunts. I asked why they could not just do this procedure and the surgeon said she was not a canidate because of her brain anatomy. They simply could not get to the third ventrical safely to open it up.
Avri had so many people praying for her. We had a fast for her and she had a blessing. She went in for surgery to remove the cyst. She came out of the surgery. Matt and I were sitting in her room waiting when Her surgeon came in and said "everything went better than we could have ever expected" He said " We were able to go in and safely remove the cyst and as he finished up the third ventrical presented its self to him. He said "it was right there, so I went ahead and opened it up for her" "SHE IS SHUNT FREE". Holy cow...Matt and I both just started to cry. This was a mirrical. For the first time in Avris life other than her first few days of life she was shunt free. She was tube free. Her head was all closed up and functioning on its own. We could not help but thank our father in heaven for hearing all the prayers and answering them with more than anyone ever asked. We were imediatly on the phone telling our loved ones of this great thing. I felt more blessed and loved at this point in my life than I ever had. This would change our lives forever. This meant no more surgries. This meant that Avri had a chance for a normal life if her brain could heal from all the trauma it had undergone.
We were able to take Avri home the next day. We were all walking on clouds. Our joy radiated to Avri. She did not understand it but she could feel it and knew that what ever happened was good. This joy was very short lived. It was only a couple days before we were back in the ER with a very very sick child. The scans showed very large ventricals. The procedure did not work and she would need two shunts put in her head. This news was a huge let down but this is the life we knew for her. I did not understand why I had to experience the thoughts of wittnessing a modern day mirrical. Maybe just to see if I had the faith. I am not sure but we went with the flow and started from the beginning.
Avri had her shunts placed two days after the drains the surgery went great and the plan was to send her home the next day. Although that is not what happened. I woke up to a hurried rush around the room and asked what was going on. One of the nurses said Avri has staff infection in her brain they are rushing her back to surgery to take out her shunts. I understand the rush in the event but before I knew it Avri was wisked away and I was left in the room to let what I was just told sink in.

Avris gets an IEP.

After Avris big seizure she just no longer could keep up with her schooling. She had remained in a regular school classes with outside help up until now. She was in the 4th grade at this point. The school performed a number of tests on her and decided that she had regressed so much that she needed to be placed in a life skills class. She ended up having to transfer to another school because the school she was attending did not have a class like the one she needed to be in. I remember walking into her classroom to meet the other kids and the teacher and doing everything I could not to break down and cry. She was no longer in a class with "normal kids" She was in a class with kids that had severe birth defects. I have to say that I love all these kids and the special spirits. I saw kids with helmets, downs syndrome, wheel chairs. I was introduced to them and half of them that tried to talk to me, I could not understand a word they were saying to me, they were drooling and in diapers. Like I said this is not a bad classification and I am not talking down on these kids, but this is the closest thing to Avri's mental ability now. Two weeks ago she was in a main stream school with fully functioning kids. This hit me so hard. I had taken so much pride in her beating all the odds that had been placed on her for so long. Some how we were moving back wards now and I had no control over it.
Although this was very hard for me to put my head around at first this has turned out to be the best thing we could have ever done for Avri. She was so much happier. I think she struggled before and that school for her was so hard but she is a trooper and plugged along no matter what. I began to see sides of her that she did not have before. I still struggle to this day in wanting her to be accepted with her peers and to be able to go to the movies and enjoy the things that kids her age enjoy. I could not be happier with the teachers and the aides that she has had. She has this second family that she goes to everyday and she loves it. When Avri is happy I am happy.

Part 2 of nightmare seizure!

When I arrived at the hospital Avris seizure had finally stopped. She was not awake and still had a machine breathing for her. It did not take long for her to wake and start fighting the tube in her throat. The tube was removed and she began to breath with ease on her own. She was groggy from all the medications but seemed alert enough to know she was going to be ok.
The next morning the nerologist came walking in. He was looking at her chart when he aproched me and asked if she was paralized on her right or left side. I said " She is not paralized anywhere" His head snapped right up and looked at me as if he had the shock of his life time. He said "in all my years of practice I have never seen a prolonged seizure of that magnitude not cause paralisis on at least one side of the body". he then proceded to check her out and see for himself that she seemed uneffected from this seizure. She was tired and all her muscles ached but she was moving all her body parts.
Avri spent a couple more days in the hospital. We did notice that she could not write as well as she had before and her memory of so many things was gone. We were able to bring her home and although we were so grateful that she had the outcome she did, we were noticing she was no longer the same kid she was before the seizure. We addressed this at follow up appointments and the doctors said she simply went to long without oxygen to her brain and that she is so lucky to have the functions she did have.

One year full of seizures!

I described the first morning I woke up to Avri having a seizure. It was one of the scariest most helpless feelings as a mother. Little did I know that I was in for a very ruff ride. That morning was just the beginning of one of the hardest years I would live so far in my life. I have talked about all the struggles through this year with doctors not listening and all the medications we tried that failed. I have not gone into the seizure detail of the story yet. In my mind it is a long and very detailed story full of fear, anger, pain and much helplessness among many the things. As far as words and sharing this part of the story I can't explain or describe a lot of it.
So Avri had her first seizure after that first one they just kept coming. I can recall 3 more full grandmal seizures that we could not stop. Avri had gone into a neurologist and had all the EEG studies done. She had tried every single seizure medication available. We finally settled on one called lamictal. It had the least amount of side effects for her. We also had a nose spray that we kept on hand so if she ever went into a grandmall seizure we could administer this strong medication and try and stop the seizure. So Every time Avri had a seizure that lasted more than 5 minutes we were to call the ambulance. All four times the ambulance was called to our house it was around 6am. I have never considered myself a light sleeper but some how all those mornings I awoke to the change in Avri's breathing. I always like to imagine that I have this co-parenting angel with me for times like that. I have no other explanations for waking up. I have laid in bed many nights listening for my kids, just to see if I can hear them breath when I am trying to. Avri often said she had a dream about angels being in the corner of her room watching her. Some times I wonder if it is not a dream at all. It is hard to think of those mornings and wonder what would have happened if I did not wake up.
I remember this day like it happened yesterday. It was about 3pm. I was sitting on the couch and I must have been exhausted because I fell asleep, something I could not do if I tried. Avri wondered outside. I woke up to my neighbor knocking on my door. She said to me" Avri is wondering around out here in a complete daze" " I tried to talk to her but she won't respond to me". I ran outside. It was one of the nicest days we had had in a long time. Avri was standing across the street next to the neighbors car. She was rubbing her fingers together and had a slight bounce to her. She seemed 100% focused on her hands. I said her name and she did not hear me. I put my arm around her and slowly began guiding her towards the house. Her fingers never stopped rubbing and even though she was slowly walking in the direction I was taking her she still had the bounce to her body. I had this intense fear welling up in me. I remember thinking to myself she is fighting off a seizure. I was able to steer her up our front steps. I was talking so softly to her and being so gentle as if one loud sound or wrong touch would break her concentration and her mind would give into the misfires. I said "this is your last step one more step and you will be back in the house" She obeyed as if she were in a robotic mode. One foot in the door and it was as if she knew she were safe the moment her second foot came down the rest of her body relaxed and gave into the horrible mental fight she had been fighting. I don't know what felt so different that day, but I did not time this one. The second she went down I told the neighbor to call 911. When the ambulance arrived Avri was still in the same spot still in full grandmal seizure. The EMTs moved her to the middle of my living room floor where they worked on her. They put oxygen on her and where taking her stats. With in five minutes of them being at my house they said they were taking her to the American fork hospital. I usually drove my car and followed behind the ambulance but this time the EMT offered for me to hop in the front and ride with her. We were only about 2 miles from the house when I heard the EMTS in the back talking about getting an IV going. They seemed to be having a hard time getting on in because she was still in full seizure mode. I remember hearing "she has blood coming out of her mouth" and then a reply "she bit her tongue" It seems like it took a life time to get to the American fork hospital. Although it was probley my fastest ride to that location ever it felt like the slowest. I could have got out and ran along side the ambulance and still beat them.
Avri was wheeled into a room where there was a team of doctors waiting for her. The EMTS were never able to get the IV in so that was the first thing. Then the medications started. Avri was being shot up with every seizure medication possible to stop her seizure. Nothing worked. I found that if I gently rubbed Avri's cheek and repeated that I loved her and to come back to me over and over she eventually did. On this particular day no amount of touching her cheek and begging her to to come back helped. I was standing over her kissing her and whispering in her ear when all the sudden a doctor grabbed me by the shoulders and swiftly but gentle pushed me out into the hall. He said it was time for me to step out. They would come get me when she was stable. I had so many questions "what had just happened?" He was gone before I got a sound out. I think I just stood in the very place he left me. It seemed as though time had froze and the world had gone quiet and I was standing right here , the only place In the world. I was still just standing there when a nurse or someone came out and said "Avri has stopped breathing on her own" ." We have put her on a ventilator and called life flight" "She will be going to Primary children's hospital, it is my understanding you rode with the ambulance" "You will need to find a ride and you may want to leave now" I asked if I could at least go in and see her before they took her and she said" "no she is not stable and as soon as we have word that life flight is near we are going to paralyze her with an IV drug for transport" She said "The best thing you can do right now is hold it together and find a ride"
Once again dead silence. I turned and walked to the phone. I called Matt and he was not within a reasonable distance to come get me. I called my sister she was not able to come and get me. I called my mom at work and although she lived in Payson a good 45 minutes away she said she was coming. My dad must have been home from work and my mom had just got off work. 2 hours had already gone by since this whole ordeal started. Avri had been in full grandmal seizure for 2 hours at this point. I remember hearing the helicopter come and go. I do not remember anything else in-between that. I could not tell you how I got out to my dads truck or a thing about the drive to Primary children's hospital. I do know that at some point later on my dad bragged about how fast he drove to get there and my mom saying how impressed she was with him because he normally follows the speed limit no matter the hurry.
I will continue this story in another post.

The last straw!

I was fed up. I know my daughter. I felt like I was watching her slowly deteriorate right in front of me. I am not sure if it was that she wet her pants again at school, the black circles under her eye's, or that gut instinct that said "I know something is wrong". I called the neurosurgery department at about 1:00pm. I got the nurses answering machine and left a message. I basically said I needed to know where else I could take her. I told them I would fly anywhere in the world. I knew something was wrong and I felt like I was letting her die just sitting around listening to a bunch of doctors who were not listening to me. I knew her and I knew some thing was wrong.
To my surprise I got a return call pretty quick. The person on the other line was an intern. He asked me a few questions. I gave him a short run down of what was going on and he said he was going to review her scans and call me back. It was a half an hour later that he called back and told me...." We have been comparing all Avri's CT scans for the last year to a bad scan" In otherwise she needed surgery, she needed surgery this entire time. That first scan that was taken in the ER was compared to a scan that was taken in the ER when her ventricles were big ( a time that she had surgery) He apologized, asked me when the last time she ate was and said how soon can you get her up here? He told me to go straight to the ER where he would alert the staff and have them ready to take her back. He also said he would book the OR and have her Neurosurgeon ready for her.
Despite the intense anger I should be feeling, I was so grateful that someone had listened to me and found the mistake. I was out the door and arrived at the Hospital 45 minutes later. We were ushered straight back to a room and had people left and right drawing blood and hooking Avri up to machines. It was just a couple hours later that she went back for surgery. These shunt revisions are always scary because there are the same risks as any surgery. She is put out they open up her head and take out the tubes and drains that have been in her brain. They usually have to drill another small hole in the scull and put new drains into her ventricles in her brain then they make in incision in her belly and thread the tubing through and connect everything. She has the risks of infection, stroke, brain bleeds, brain damage. It is an hour of praying and hoping that she will come back better than she went in.
Usually the surgeon comes down to the surgery waiting room and lets you know when he is done. He tells you how things went and what exactly they did. I got a phone call saying she was out and I could go down to recovery to see her. She came out of it very fast and we were able to go back to her room. My husband and I were sitting at her side when the Surgeon came in. He looked somewhat defeated. It is one of those looks that makes your stomach sink because you think some thing has gone wrong. " In this case it was just a whole team of doctors who did not listen to a devoted mother for way to long" He put his head down and said that everything went very good. He was able to take out the shunt and replace it with a new one. He then said " her pressure in her head was so high that when he opened up her scull liquid sprayed out" he said she should feel much better and that he was very sorry. My husband was immediately so mad, he wanted to know who was going to pay for all this and who was going to own up to all the suffering and pain Avri went through. All the Dr could say was "I am sorry" and he walked out. This all seems like finally!!! She is fixed good to go. Recovery in the hospital is usually 1 day and she is usually back to herself with in the next day or two. This was so not the case this time around. We were in for a long bumpy road.