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.

The storm!

Ok. So tomorrow came and went and now it is months since I said I would start a new chapter tomorrow. This is what happens in my life. Tomorrow never means tomorrow unless it is an appointment.
It Started in the month of October. Avri was 8 years old at the time. I brought her into the emergency room at Primary Children's Medical Center because she was throwing up. This is what you do as a parent of a child with hydrocephalus. Put some pressure on the brain and it causes projectile vomiting. I am not talking "mom I have a tummy ache get me a bowl" I am talking "mom can I go play ?" then she sprays the door on her way out the door and Say's "wow that was weird, but I feel much better now". Back to the emergency room visit. The doctors ordered the routine CT scans and said everything looks great. She must have a flu or something.
As the "uneducated" in radiology or neurosurgery schooling, we are suppose to trust in the Ct scans and these trained people because they are suppose to know more than us, because technology tells us how we are feeling now days. It is not true but that's how the world turns right!
So the vomiting continues, not everyday but enough that I bring her back the next month. Same thing the scan looks exactly the same. This time they tap the shunt. Fluid is present and clear so must be nerves or maybe she has had the bug a couple times. Some where in my brain I am not buying it already but I have nothing to argue with other than a gut feeling. I bring her home again.
Have you ever been asleep and heard a sound that becomes a part of your dream. This is the new part of my night mare. I dreamed there was a dog sniffing and snorting and wake to realize the sound is coming from Avri's room. I still think that something is actually wrong with the dog. I walk into her room at 5am and Avri is in her bed. She is foaming at the mouth her eyes are rolled back in her head, her head is contorted to the side and her whole body is jerking. I screamed for my husband and then turn into a complete idiot. Yes (you can laugh) I ran out side across the street to the neighbors house. I was pounding in her door. Then think to myself "what the crap am I doing?" So I run back home grab the phone and call 911. My neighbor never answered the door "thank goodness" My thinking "I think" was that she had mentioned that she had seizures and I knew in the back of my mind that Avri was having a seizure but I had never seen one before . Reality is, I was panicked and scared to death.
The EMT's showed up and Avri was still having the seizure. I think they gave her something to stop it because she stopped shortly after they got here. They rushed her to the American fork hospital where they took her straight back for a CT. She was then taken by ambulance to Primary Children's Hospital because the doctors at American fork thought her ventricles in her brain looked big and said that the pressure on her brain was what caused the seizure. Guess what? Nero surgeons at Primary Children's said it was a whole new set of problems or a fluke because her ventricles looked great. They sent us home again.
Now the hallucinations start. I remember on Christmas day the kids had opened their gifts and Avri went up stairs to get dressed. We were all sitting in the living room and she walked down the stairs like everything was totally normal and fine, but her bra was hanging on the outside of her shirt around her neck. I asked her what she was doing and she said "nothing" like it is normal for the bra to be worn like a necklace. One night she walked out of her her down the stairs and into the kitchen and she kept raising her leg like she was trying to go up stairs and I asked her what she was doing and she pointed to the ceiling and said she was trying to climb up the stairs. It became normal for her to open the shoe closet or the door that goes out to the garage and ask in total shock and dismay "where did my room go?" another time she was frantically trying to turn off the water faucet but it would not turn off. The water was not on. She was motioning with her hand as if to splash the water to show me when I told her there was no water. She had even wet in her pants a couple times.I took her back to Primary Children's and they did the routine CT tapped the shunt, tapped the reservoir. They did do blood work this time. WARNING this next part might shock you. They told me to look at my home life, look at things that have changed that might be causing her to act out. They wrote in her chart and the discharge that she had behavioral problems. Now any of you that know Avri know this is so far off. Not even close. This is one of those times that I was so mad I could not even breath, could not think straight. All I could do was turn around in my shocked state and take my deteriorating daughter home.
Now the seizures start on a regular basis. We are now dealing with a whole new set of problems. Instead of taking her in for shunt problems nerology has tak'in over. She is having EKG studies. They are saying everything is because of the seizures and none of it has to do with pressure on her head. We are going through every type of seizure med to try to control the seizure's. Now her wetting her pants and hallucinations are all side effects of the medications. As her shunt is not the root cause of any of this. We go from extreme head aches to sedated to throwing up do to uncontrollable eating. This is a night mare.