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!
Avri was born in 1997 with congenital hydrocephalus. She currently has 2 vp shunts. This is a blog about a girl who has every thing stacked against her. The doctors said she should not live. This is for inspiration to anyone who has ever been told it is not possible. This is all about Avri's struggles and triumphs!
Monday, March 21, 2011
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"
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.
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.
Sunday, March 20, 2011
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!
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.
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.
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.
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.
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