Jumping ahead...

I haven't been regular in posting this blog like I want to, so I am skipping months so I can get caught up and hopefully stay ahead of the game. In February of 2009, I took Jaidah for her one year post op from surgery. Dr. Day, her neurosurgeon from Missoula told me that if we wanted we could have her drain from her previous surgery taken out as it wasn't needed any longer since it was only placed to be used to drain excess fluid from her surgery and was probably even plugged up at this point. Gary and I discussed it and agreed that if she didn't need anything foreign in her body than we would rather have it out. We took her down to Missoula on Monday and Tuesday morning she underwent surgery. It didn't take long to pull the drain out and only entailed an incision in the previous site to pull it through. We took her home that same afternoon and although she was groggy from the anesthesia, she seemed to be doing fine. Later that evening I tried feeding her and put her to bed. Suddenly over the monitor I hear her gagging and immediately ran to her side. She was throwing up. I grabbed her and turned her over so she wouldn't choke and yelled for Gary. I slept with her the rest of the night on my chest. I just figured it was a result of the anesthesia as I had experienced throwing up after surgery myself and had been told that anesthesia can do that to you. The next day we noticed she seemed extremely tired and kept falling asleep even while trying to play on the floor. Everytime I gave her something to eat or drink she started throwing up. I called her pediatrician who said she may have a little virus and to just try pushing the fluids. It didn't work. Again I slept with her on my chest. I was getting worried because we couldn't get her to take any fluids. Finally Thursday morning while sleeping with us she woke up and gave me the sign that I had been trying to teach her; she touched her lips indicating what I thought was that she wanted to eat or drink. At that point I hadn't realized she had understood what I had been trying to show her but had never used it. I gave her a bottle and she was able to keep a couple of ounces down. She still seemed listless, however, and I called the doctor again and her neurosurgeon who decided to order a CT scan here in Kalispell and she would again see her pediatrician. The CT scan was negative for any bleeding and again I was sent home. Saturday after I got home from work, Gary said he had been able to get her to drink a little Pedialyte and she had seemed to perk up a little and was even trying to giggle. Later that evening after I tried giving her more Pedialyte, I noticed a wet spot on my chest from where her head had been lying. At first I thought maybe it was just some Pedialyte I had inadvertently spilled when I had been trying to get her to drink it. When I laid her in her crib and a little while later went to check on her and there was a large wet spot in the crib, I became alarmed. I couldn't see anything but there was definitely a wetness around her incision site but no blood. I decided then if she wasn't better by morning I was taking her back to the hospital but as I sat there rocking her, I had the feeling I needed to go to the hospital right then. I put my clothes on and woke Gary to tell him what I was doing and that I would call him when I found out something. It was freezing outside and almost midnight when I got to town. It had started snowing and was really coming down. As soon as I got to the ER and had told them about what had been happening, they called Dr. Day. He knew then immediately what the problem was and what we were going to have to do. She was leaking spinal fluid through her surgical incision site and was building pressure again in her brain from the fluid. This was causing her listlessness and throwing up. The ER doctor came in and said that Dr. Day wanted a spinal tap but that because she was so little, he didn't feel comfortable doing it and that Dr. Day said it could wait until the next day when we could get her to Missoula. Our pediatrician came in also and told us that we would have to go to Missoula on Sunday and see Dr. Day again. After several attempts the nurse finally got an IV started on her and even though I told her the previous IV she had at surgery had been in her foot, she proceeded to put it in her right arm, immobilizing it so she couldn't even suck her thumb for comfort. Because of her cerebral palsy on the left, she wasn't able to find a vein to use in that arm. We spent another night with her sleeping on my chest, this time in a hospital bed. I planned on driving her myself to Missoula the next day but when we awoke we were in the middle of probably the worse snow storm we had experienced all winter. The doctor didn't feel comfortable with me driving in case something happened along the way and Gary had to stay home to run our business at that point, so we had no choice but to take an ambulance ride. Again Jaidah slept on my chest until we got to Missoula. Dr. Day met us there and it was decided that she had developed hydrocephalus from scar tissue forming from her injuries and not allowing the spinal fluid to drain like it does normally. The fluid had found a source of draining through her previous drain tube and when that was taken out there was no place for it to go. The reason it had taken so many days for it to start oozing through her incision was due to the fact that she had so much space in her little skull from her previous brain debridement the year before and it took a few days to fill up. If she had not started oozing from her incision site, the doctor said it would have come out her nose, ears, or eyes. Rather than take the time to deaden the area on her head, the doctor decided we should hold her down and insert a needle into the site to withdraw some fluid instead of trying to do a spinal tap which would be even more invasive. The nurse told me to look away as we both forced her to lie still. I had tears well in my eyes as I heard my baby scream as the doctor forced the needle into her skull to withdraw some fluid. For such a small little girl she was so strong and fought our holding her down. I could only imagine what fear was going through her little brain. I held her tight afterwards as they made preparation for her surgery. I rocked her and held her tight and tried soothing her as she whimpered in my arms. She fell asleep as I held her until suddenly the nurse came in and started flicking her feet. Evidently her heart rate was dropping lower than it should have and she was trying to speed it up again. Finally they took her away to surgery. She was out sooner than I expected and the doctor was happy that he was able to reinsert a hydrocephalus shunt through the previous incision site and was able to feed it down through her neck and into her stomach through the previous tract left by the other drain that had been removed. Scar tissue had not formed yet and it was easy to reinsert the shunt. This shunt would be able to be regulated by inserting a little screw driver and adjusting if needed at a later date. Again, I spent another night with her on my chest in a hospital bed as she didn't want to be away from me. She would snuggle close and the nurses would come in to check her every few hours and readminister antibiotics and pain meds. The doctor was very careful in leaving as much hair as possible on that side of her head and had plastered the remaining hair from the top of her head with surgical glue so it stuck up like a mohawk and was stiff as a rock! I was thankful he hadn't shaved it all though, but it was tough to get the glue out. Gary came to pick us up two days later and on the way home we found out our business landlord had locked us out of our building as we had become delinquent in our rent. He had kept raising our rent to the point we could not keep paying it and although we were trying to work with him, and he had just shook hands with Gary and told him the day before to "just get your wife and baby back and will work something out", it didn't turn out that way. Over night we had lost our business and our income. He wouldn't allow us to take any of our equipment or anything and we didn't have the money to fight him and morally we knew we did owe him and had no other way to pay other than to let him keep our equipment. At that point it became a bad taste in our mouth and we just wanted out anyway but it would have been nice to at least make back some of the money we had put into the business but it wasn't going to be. Another change was coming to our ongoing story...