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The Amazing Katie

Journal (before surgery and after)

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This is where you can read my updates

 
 
January 2003:
     We went to Cleveland to see a neurologist. He says there are some test Katie needs to go through to see if she is a candidate for surgery. They also did an EEG which they said this one looks worse then the one we had done in Morgantown 2 weeks earlier. The doctor explained to us her EEG on the right side of the brain looks as if she was having a grandmal seizure 24 hours aday, even though she may be talking to us, playing or just watching television.   
 
Febuary 2003:
     Cleveland calls they have a date for her to be admitted. She will be admitted march 3rd, she will have continious 24 hour EEG monitoring, a MRI, PET Scan and a neuropsycological testing done while she is admitted. With these test we have to pray the left side of the brain is ok before she qualifies for surgery.
 The week prior to admission Katie experienced another seizure in which I noticed she quit breathing and Diastat was given. 
 
March 2003:  
     Katie went into the hospital on the 3rd. This was such a hard time for her she just did'nt understand why all this was being done. She missed home and her brothers. She was really a good girl though and captured everyones heart. They took her off her medicines on Wednesday to induce a seizure. She had one about an hour after her meds were due, but she fought it for 3 1/2 hours some how she manages to run from it at times. She will hug me hard, turn her head, jump up any type of movement she can to fight it, which truely amazed everyone that she could fight for so long. It finally took over when they were holding her down to redo some electrodes she just could not fight both and the seizure took over.
     After all test were concluded Dr. Kotagal told us she would be a good candidate for a right functional hemispherectomy. But it would need to be presented in a team meeting. She was dicharged on the 7th. And we were told he would call us on Tuesday of the following week after their meeting.
     He called and said everyone felt the surgery was the best way to go. But really this is tearing our Hearts out.  How do we explain to our baby that surgery will leave her really weak on the left side of her body she will walk probably with a limp. Her left hand only a helper tool. And that she will have a permanent vision loss, with no left peripheral vision in both eyes and that her hair will be gone. I hope she will just understand one day THAT WE WILL MAKE THIS DECISION OUT OF LOVE FOR HER.
 
March 13:
     Katie had constant seizure activity for over an hour, just with jerks and constant eye fluttering sometimes so many to even count, it was clear she was fighting it, Diastat was given and worked.
 
March 19 & 23:
     Katie had big seizures on these days and quit breathing both times and Diastat was used.
 
March 20:
     Cleveland calls Katie will have a second vision test done on April 3rd, We will then see the neuro-surgeon on the 4th.They have scheduled her surgery for May 1st., But we need to talk to him and collect all the information he tells us and then decide. We already feel it is the best, but really we need to cope with this. We know in our hearts this is probably the best hope for Kaitlyn to have a chance at a more typical life than having constant seizures, regressing in development or even worse losing her. But I think we just feel we need time to recollect ourselves since this really has been sprung on her and our family so suddenly. We also need time to explain this to our other children and prepare them for the fact we will be with Katie for a while in the hospital and that Their Maw Maw will be here to look after them for awhile.
 
March 30 :
     Katie has done better this past week, She was still having alot of myclonic jerks of her left arm and eye indicating seizure activity through out the day everyday. So the doctor added her Klonopin back on her med list Wednesday 2x aday and that seems to have really helped. We are hoping and praying it continues to help. I will try to update again before we go to Cleveland this week then I will update Friday April 4th, on our Appt. in Cleveland. We will not get home until late in the evening so it will be a late post.
 
April 5:
      Well we never got to go to Cleveland for our appointments with opthamology or to see the neuro-surgeon. Our insurance is denying Katie to go back to Cleveland. After, allowing all test to be done there. They are saying we have a neuro surgeon in our plan and he is qualified to do the surgery even though he has only done it maybe a couple times in emergency situations at another hospital. And, the hospital he works at we are unsure if they have ever had a hemispherectomy done there, which we dont believe they have(NOTE: This surgery is only done 5 to 50 times a year world wide and actually much lower than 50 times most years and we want a well experienced neuro- surgeon who has perfomed this surgery more than just a few times). We do not feel comfortable with this decision so we are appealing it in hopes we will win.The story does actually get more complexed than this and to explain it in more detail, it would probably take a couple pages.  We cannot let our daughter have this major of surgery with someone who does not have alot of experience behind him in this type of surgery. I am not saying this surgeon is a bad surgeon He may be great, but he does not have much experience on a hemispherectomy. For that reason alone we feel we cannot let him do the surgery. Also this other hospital is in another state. Why not let us go to Cleveland, Oh which happens to be in the same state we live in. We will continue to fight and will update you.  
 
     Katie otherwise has been doing ok. They increased her Klonopin to 3 times aday now, and it seems to be working better. She still continues to have at least a few jerks and eye flutters everyday, somedays better than others. Please continue to keep her in your prayers.
 
April 8:
    Our insurance as over turned their original decision. They have given us the ok to go to Cleveland and should we have the surgery Katie can have it done there. What a alot of stress that was just released off of us. Katie now see's the neuro-surgeon on April 15. Which only gives us 2 weeks until the surgery date.
 
April 13:
     Cleveland called friday it seems Dr. Bingaman needs to go out of town May 2. And does not want to do Katies surgery that day. By all means that was fine with us we certainly don't want the doctor to leave town the day after this major of surgery. So it has been rescheduled for May 8th. Which gives us more time after we see him on Tuesday april 15 to collect our thoughts and come to a decision. Katie has done well all week. She continues to have a few eye flutters and jerks, but not nearly as bad as they were. We just hope the Klonopin keeps working. She has a cold and missed 2 days of school last week. Hopefully she can return tomorrow, then she will miss again on Tuesday. Oh bummer because she loves school!  Will update again Tuesday evening or Wednesday.
 
 
April 27th:
     We had Katie dedicated to the lord our savior at the First Bapist Church in Barnesville, OH.
 
 
April 28:
 
     I know I said I would update on KATIE right after her appointment, but we had a rough go at things. While in Cleveland on the 15th I got a call my mother had a stroke. She passed away on the 16th so I have not been on the computer much. The neuro-surgeon in Cleveland was surprised at Katie's development and answered all our question about the surgery.  We really felt confident about the surgery when we left his office. He told us that developmentally he thought Katie would blossom after surgery and said there is a good possibility she could catch up developmentally. He even told us that if this were his child he would definetly do the surgery.  He also told us this is the only option we have for Katie to have a chance at a more typical life. Yes she will always have a physical disability with her left hand and  permanent vision loss, but left untreated we could see regression and maybe total loss of function and most likely a shortened life expectancy due to the seizures. With these options given to us we have scheduled surgery for May 8th. We are truely scared and hope that Katie will understand this is our only option.
 
April 30:
 
      Well back to Cleveland we went again today., Katie had a visit with their pediatrician for pre-op assessment. Which went well. She also saw Opthamology which also went good. He said he felt Katie would learn to compensate well after surgery for the left peripheral vision loss but it could take a year for total compensation.  As the days grow closer to surgery, I'll tell you we get more scared everyday.  I wonder everyday what will she think after she wakes up from surgery? I know she will be scared! But will she think she was being punished? Which she never gets ever! Will she think we are being mean to her? I sure hope not. But we have to keep thinking that when she gets older she will understand this is something that needed to be done so she could have a chance at a more typical and functional life.
 
May 8 thru August 2003:
     May 8th was the longest day of our lives. I was a nervous wreck as was her father. She really had no idea what was about to happen. They came at 6:30 am to get her my husband asked me to walk her back to the operating room, but I couldn't. I was already crying and did not want her to see how upset I was, although she probably knew. He walked her back and returned about 6:45 crying he said "LIFES JUST NOT FAIR" we just embraced not wanting to believe what our little girl was going through. I then asked him how she did he said ok that she was already knocked out by anesthesia when he left her. We were to take our pager and wait in the waiting room and they would give us updates as the surgery went on.  We got updates just about hourly that things were going well and she was doing fine.
     At about 3:45pm we got a call to meet them at the desk, surgery was over. They immediately took her to PICU. Surgery went well they told us and that she only needed 1 pint of blood, but because of the blood loss she needed a loading dose of dilantin just incase of any seizures. Dr. Bingaman also told us he had to remove 3/4 of the brain on the right side and disconnect the whole right, he told us he left only the occipital lobe for filler space so the brain would not shift and fluid would still flow through and hopefully she would not need a shunt. All the way to her room they just kept telling us look at her face nothing else. Well as a mom and a nurse that is hard to do. She looked awful laying there and I hated myself for putting her through this.
     She had a bandage wrapped around her head, a catheter in, an IV in her left arm and right ankle, an artery line in her left arm, a PIC line sewn in her neck, and two drain tubes from her head.  Oh what a horrible person I felt like. How could I have put her through this. We stayed by her side and played her favorite videos over and over for her as she laid there not even awake enough to tell us she was ok. Day 1,2, and 3 nothing from Katie just opening her eyes and then back to sleep. Day 4 she woke up a little and said Hi DAD! We were so excited! Yes she was talking. Day 5 she was awake more and one of her favorite songs was playing "If you're happy and you know it" well she went to clap her hands and she raise her hand and she realized the left hand would not clap, I as a mother broke down and had to leave her room for a minute or so to collect myself because I just broke down. Day 6 they moved her to the monitoring unit for observation.
     Then day 8 she went to Rehab. Katie spent 3 1/2 weeks at Cleveland Clinic's rehab for Children before comming home, where she had to start learning how to sit up again, stand, walk, roll over and adjust to living in this world with one hand that is made for two hands. This was so hard on her I would watch as she would play with toys that would require two hands and she would pick her left hand up put it on the toy and look at me as if MOM do something IT'S NOT WORKING. Her smiles were not there she just seemed sad most of the time.
     Then she met a friend there and they would watch television together, he would be walking and running all over the place and she wanting more than anything to get up off her chair and run with him she would try to stand and just couldn't get her left leg cordinated  enough to even stand, but he was bringing her smiles back just by being her friend. My heart was breaking, I spent many hours of crying, when, when will she be strong enough to get even 50% of her abilities back ( and all the while I knew in her mind she was wondering what the heck has happened to her). The therapist there were so  wonderful she had a full schedule of 5 hours of therapy each day. They were determined to help this little girl to learn how to get her abilities back. They had to push her to extreme limitations at times but, watching her determination was amazing.
     She started walking again at 3 weeks post operatively and speech had already picked up more. Eating and drinking were a problem though she just did not want to eat or drink. So that was our daily challenge. She did finally get her appetite back around the 3rd week but drinking was a major issue they were even considering putting a naso-gastric tube in to force fluids. I knew that would really icing the cake and send her further into depression So I fought fluids into her Jello, Watermelon, Ice, you name it if it had fluid in it she was getting it. Finally a break through and she decided okay give me chocolate milk and yes finally she was drinking it like it was the best thing she ever had.  
     Once discharged to come home Katie's smiles and laughs all came back and the real determination set in, she had her own home, and most importantly her brothers, she did not want them to leave her side she missed them so much and they missed her. She countinued intense therapy  at a local hospital 3 days a week in which she spent most of her day there in physical,occupational,speech and aquatic therapy. They were great they were just astouded by the type of surgery she had and how well she was doing. They focused on using that left side more. Katie never seems to mind the therapy she is just so determined to do everything again.
    So now Summer is about over and her school will evaluate her for the types of  therapies she will need. Which I am really glad she is ready to go back to school because they knew what she did before surgery and they are the GREATEST and I know they will focus so much on the physical abilities she had before surgery.
    Well I took her in for her evaluation and they were amazed she was talking so much and just going 90 miles an hour walking, running and able to get off the floor with just one hand. They could not believe it. They said Katie's self determination was amazing and she was doing way more then they expected her to be doing, She is not going to let anyone OR ANYTHING STOP HER she is a fighter . As for seizures she has been clinically seizure free but she will have an EEG in Nov. so we are praying that all will be just fine and our amazing Katie will just keep amazing us in all she does.