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.