And Another One!

Our last hospital stay ended with a few days of recovery, some oxygen and suction for home and some antibiotics and fish oil added to her meds and we got to go home on Saturday. The first day home and she still had not had a seizure. The last few days in the hospital we were seeing what looked like our old staring up blood shot eyes seizure that we have lots of videos of. Then after only a few of those they disapeared as well. Then on Monnday she started some new little seizures that I did not like. They involved arms stiffening up and shaking in her arms and legs. The next day they got a little worse and the next was even worse. By thursday I called the Ketogenic dietician because after checking all of her levels I believed that she had bumped out of ketosis somehow and that was probably what was causing the breakthrough seizures. We went over all of the possibilities and nothing added up. We decided to cut her off of her fish oil and mouth wash and I would then attempt to put her back into ketosis at home myself. I cut off her food at 4am fri already but the dietician asked me to leave it off and give her only water until she produced ketones. I fed her only water and continually checked her blood levels and waited for her levels to come up. In fact I used all my blood ketones checkers so I put some cotton balls in her diaper to wait for pee so I could test that for ketones. I was told by the ketogenic dietician that if her ketones didnt come up by the morning she would need ot be seen right away. By the morning not only did I have no ketone blood checkers but the cotton balls were dry. I contacted the medical supply company so that maybe I could just run to there office and pick up some more sticks but they kept putting me on hold and telling me they were trying to figure out if they even had any in stock and that the insurance was being difficult because the perscription for them ran out and they would have to send for a new one. I went back and forth with them for about an hour before I decided to call Kristi Heely and tell her that I couldnt get this figured out so I was just going to bring her to the ER to have her levels checked so that we would know for sure, if they were still low I would have to bring her there anyway. Kristy had just talked to medical supply people and they were attempting to get it fixed quickly but after another call to the supply company and they said were STILL trying to figure it out whether we have any, I decided to just take her in since I was already almost there. When we got to the ER they took her temp right away and it was way too low :( They had to re heat her with the magic heating blanket(think I want one for xmas LOL) then they came in and told me she was most defenetly being admitted and strait to the PICU(Pediatric Intensive Care Unit) I had once again only a few min to figure something out and was not going to not have any of my stuff again so I had my sister come sit with Baybe and I rushed to my house got my stuff and taylor from school and rushed back. Baybeblue right away when I got back woke up and started having seizures and crying really bad. She had quite a few in a row. Her keto dietician and our favorite Neuro Dr Coryell joined the ICU team to work on Baybes case. They all witnessed her brand new seizures and decided to give her some ativan to calm her for the night. After the first dose she then had a few more seizures. They then decided to give her a bigger dose of ativan to really calm her. After that she fell asleep for an hour or so. Then she wakes up and just stares for about 20 minutes. Then she has another big seizure and starts crying and doesnt stop at the end of the seizure. She just keeps suddenly crying hard over and over. We removed her catheter and searched all over for what might be causing the pain she seems to be having. It wasnt the catheter cause shes still crying with it out. They tried one more dose of Ativan to see if they could stop the crying that was originally a part of her seizure. The ativan made her seem sleepier but did not make her stop crying which reinforced the thought that this was pain and not seizure. I then asked them to give her something for pain and again shes back on morphine. She cried for about 5 min while it kicked in and now she is out. It is midnight on Friday night and I am sitting here waiting for whats next. If everything goes ok tonight then we will be moved upstairs tomorrow and we will be under the neuro's watch. The are talking about doing an eeg to see whats happening and they have run a million blood tests again that we will be waiting for the results on. Her ketones have gone up a bit since we have been here but aparently not enough. It so stange how she can seem to be doing so much better one minute and then so bad the next. Its breaking my heart seeing her cry so much, it is for usre not something we are not used to seeing. Pretty crazy that last week was finals week so its like she got better long enough for me to finish my classes and now she is sick again. Her lungs although they said look better than when discharged Saturday still ate pretty bad and she sounds terrible so they are doing suction and respitory therapy and she is still on oxygen although she was at home too. Im hoping and praying that this is the same crying we saw right before we started the diet and once she is back in ketosis they will stop. Her infantile spasms are still gone though no sign of those damn things. Il be back for an update tomorrow, had to take a break while I finished my finals but those are done and those classes can eat my dust, just kidding :) I actually really liked those classes and am going to miss the teachers very much. They really had faith in me through all this stuff the last few weeks they worked with me to make sure I had a chance to finish, and I am eternally grateful. I am hoping and praying with all my heart that we will get this figured out quick and get back home. We just had a stupid house inspection and had to spend last week preparing for that so between that and my finals we never really got time to all just enjoy eachother and being home. We were gona start that this weekend. Sending my love to my kids rite now and to all my support crew that love me and I love them and to anyone in the world that is going through anything similar to what we are dealing with . I wouldnt wish it on my worst enemy. This is not a way for a child to live, I am sad everyday she is sick and stressing about her quality of life. All I can do is love her and she will never be able to tell me if thats enough. It is very hard! Ninite.