So today was nuts! I started out thinking that I was going to do some school work but I didnt even have a second. The deal is that I had to aquire all the equipment that I was going to need at home and get trained to use it before tomorrow and then we could get discharged tomorrow. So I started out calling around looking for the scale we needed. It had to be a digital scale that measured to a tenth of a gram, and have a power cord in addition to battery power, and be portable. I called resteraunt supply stores and kitchen supply stores and even regular stores like target and no one had any scales that had all three things that we had to have. Finally I decided to call a little store called The Stash. I knew that I had seen scales there so I called and they had a perfect scale that had all three for 70 bucks. My Dad halped me out and went ot pick up the scale and then had to go to medical supply store and pic up the glucometer to test her blood sugar. He came to hospital and also brought the new CARSEAT. It is amazing and designed for disabled kids and goes up to 105 lbs. As soon as my Dad left the hospital the medical supply place called and said they accidently forgot to give him all the supplies for glucometer and pee sticks. I had ot call Hush and get her to go all the way back there and pick those up and get them her so that I could start getting trained before it was too late. SO got all the supplies and was waiting and waiting and I stepped out of the room for 5 min and I missed the dietician so I cant get trained now til tomorrow. CRAPPY! Good new is Hush and I poked ourselves and it didnt hurt at all and we tested our pee and we are both pretty healthy although we both have elevated Ph levels. I am exhausted and overwhelmed.We figured out that the pumps have been beeping every ten minutes because they mixed the formula wrong. Exactly why I need lots of practice before I leave tomorrow. I had to talk to like ten different people to figure out insurance and the new Keto cal formula for Baybe and I think that is finally ok as long as they show up to deliver it before I get home. Baybeblue aslo developed a new sore on the side of her foot. Its a huge swollen lump thats all red. Its not even where her IV was its onw the other side where there was tape so its another reaction so we have to realy keep an eye onit , it might be infected.
So first thing in the morning I will be trained to make her special formula with the scale, poke her and test her blood every four hours, and how to test her pee every diaper with the new test strips. As long as everything goes well we will be home by tomorrow night. Im really gona have to make such a detailed schedule of meds, food, tube care, blood,n urine. She is now on Depakene/Valporic acid, Topamax, klonopin, levacarnitine, Vitamin B6, Vitamin supplimant, and zantac. It will be interesting to see if I have time to do anything else for the next few weeks. I am praying that Baybe is strong enough to fully adapt to this diet. We are basically reprogramming the way her body functions completely. This is crazy but there have been so many miracles with this diet we are excited. I am excited to get home but at the same time I am very nervous. I had an anxiety attack over it today when I went for a walk. Im nervous something else is gona go wrong and I just dont have any strength left. I think Im doing a pretty good job pretending like I do though and I truly think thats half the battle. All I can do is trust god and the world and hope every second that I have made the right choiced so far for Baybeblue. She is so amazing, I would like to get her baptized when we get out of the hospital if anyone would like to join us then leave a comment. And if anyone can tell me how to make my blog read from top to bottom instead of bottom to top i would really appreciate it. I dont like it like this and I cant figure out how to change it for the life of me. Have a good night hopefully I get to sleep later than 4am/
Wednesday, April 29, 2009
We maybe can go home tomorrow!!
Yesterday was a stressfull day. First Baybeblue wasnt waking up in the morning and when the DOc came it at about 10:30 they said they were concerned because lethargic symptoms are what they dont want to see. They said that if she didnt wake up soon then we would have to do something. They explained that the Ketogenic diet makes the sedating side effects of the medications she is on more powerfull so they usually have to start cutting back meds when the diet starts. They dont want to do this yet with Baybe because they need to make sure that anything they see happening they know its from the diet and not from removing meds. At about noon she showed signs of being awake but not opening her eyes which is what she does when she is sedated. I got her up and gave her some spa treatment and washed her hair n gave her a head massage and the water woke her right up. 
I did her hair all pretty and she was doing well again. Then the Docs decided that we could increase her feeding rate so that she would get the same amount but I could unhook her for 4 hours in the day to hold her and stuff. I decided to break it up and started with an hour after her washing. Then around dinner time I unhooked her again for an hour and a half and when she got her blood checked it dropped from 86 down to 55. We are checking her blood sugar to make sure it doesnt EVER go below 55 and now it is sitting right at 55. If it drops below then I have to give her one ounce of orange juice in her tube and then check again in 30min. If it drops down to like 30 she would probably be unconcious and If I was at home would have to call 911. So we put her back on her food and in an hour rechecked and it was back up to aound 80. In conclusion basically for some reason taking her off the food was too much ffor her system which sucks because she may have to always be connected to her food with no freedom from it. I have to wait ot talk to Docs this morning to see whats gona happen. Meanwhile we are on our third food pump in 2 days of non stop alarming because the new formula mixture keto cal keeps clogging her tube. The dietician said this is not normal so they either mixed it wrong or its the bags or the pump. Its alarming again right now and its making me crazy. Hopefully they get it fixed today before I throw the pump out the window. Her ketones also werent as high as they were the day before so that was confusing. Today we were visited by PANDA the expertise in blood draw people came in at 5:30 am to take some blood from miss Baybeblue. Ovcourse she was finally sleeping after having like 5 seizures in an hour. luckily (haha) i had been up since 4am when the nurse was in doing her stuff. Baybe lost her IV yesterday too so If she has to get a new one it is going to be very hard. Almost all her available veins are blown. The only ones left are in her feet and that is the most painful spot for her. They go tblood on the second try on the side of her hand. It sucks because they always have to dig around in there after they put the needle in because they always miss the vein. I know its not there fault but its very hard to watch. I have been doing research on the vagus nerve the last few days because this one neuro told me there is a study on how the vagus nerve goes down into your belly so they are stopping seizures by pushing on the stomach or drawing the legs up to the stomach and putting a little pressure in is stopping seizures in some people. I cant push on her belly too much because of the G tube but I have been pushing in her belly button and rubbing her neck and throat during the seizures so wele see what happens, nothing so far. Today I have to have someone go get my blood testing equipment from medical supply so that I can be trained to use it before I leave the hospital. Then I have to have someone go and buy me a gram scale with a power cord so that I can learn how to weigh all of her food and mix it right. They said that it has to be so exact that measuring scoops arent accurate enough. Im hoping my Dad can hook me up since hes bringing the new carseat for Baybe that just arrived. It was normally 800 bucks but we got it for 500 and it is the kind of carseat we had to buy to be legal for Baybe. It is designed for disabled children, goes up to 105 lbs and exceeds all safety standards. Yahh Im excited to see it, I think its gona be hoooge. So now Im dealing with the fact that Baybes oxygen should be at 100% and it is chilin closer to 90 which means for some reason she is not getting full oxygen. Im thinking thats shes playing that super sedated game again. I found out that my favorite Doc is probably gona disapear for a while and that sucks. His name is Jason and he has seen Bayeb almost everyday she has been at Ohsu two months ago til now. I guess he just started in the area right before we got here but now hes moving onto another section I think in the stroke dept. He is a resident neuro so he will someday have his own neuro clinic and maybe Baybe could one of his first patients. I like him not only because he is the most consistant piece to Baybes care that she has ever had but mostly because whether or not he relaly does, he makes me feel like he cares about her. He listens to every word I say and never makes me feel dumb for asking a million weird questions. (so what I think people should eat there placentas, Am I really the only one that thinks that?) Thats a subject for later. I am realy happy with the team of people here at OHSU. They are all very smart and very caring people. I have now officially had every single pediatric neuro in the hospital working with us at one point in the last two months. Each neuro I meet, I like for there own reasons and all of them together Is really cool. Now Dr ROberts is back from wherever he has been and is seeing her again. He actually is her mane neuro now I guess but he hasnt been here for a while. Thats why Im so thank ful that I had Jason to be that one consistant peice to the puzzle.
I did her hair all pretty and she was doing well again. Then the Docs decided that we could increase her feeding rate so that she would get the same amount but I could unhook her for 4 hours in the day to hold her and stuff. I decided to break it up and started with an hour after her washing. Then around dinner time I unhooked her again for an hour and a half and when she got her blood checked it dropped from 86 down to 55. We are checking her blood sugar to make sure it doesnt EVER go below 55 and now it is sitting right at 55. If it drops below then I have to give her one ounce of orange juice in her tube and then check again in 30min. If it drops down to like 30 she would probably be unconcious and If I was at home would have to call 911. So we put her back on her food and in an hour rechecked and it was back up to aound 80. In conclusion basically for some reason taking her off the food was too much ffor her system which sucks because she may have to always be connected to her food with no freedom from it. I have to wait ot talk to Docs this morning to see whats gona happen. Meanwhile we are on our third food pump in 2 days of non stop alarming because the new formula mixture keto cal keeps clogging her tube. The dietician said this is not normal so they either mixed it wrong or its the bags or the pump. Its alarming again right now and its making me crazy. Hopefully they get it fixed today before I throw the pump out the window. Her ketones also werent as high as they were the day before so that was confusing. Today we were visited by PANDA the expertise in blood draw people came in at 5:30 am to take some blood from miss Baybeblue. Ovcourse she was finally sleeping after having like 5 seizures in an hour. luckily (haha) i had been up since 4am when the nurse was in doing her stuff. Baybe lost her IV yesterday too so If she has to get a new one it is going to be very hard. Almost all her available veins are blown. The only ones left are in her feet and that is the most painful spot for her. They go tblood on the second try on the side of her hand. It sucks because they always have to dig around in there after they put the needle in because they always miss the vein. I know its not there fault but its very hard to watch. I have been doing research on the vagus nerve the last few days because this one neuro told me there is a study on how the vagus nerve goes down into your belly so they are stopping seizures by pushing on the stomach or drawing the legs up to the stomach and putting a little pressure in is stopping seizures in some people. I cant push on her belly too much because of the G tube but I have been pushing in her belly button and rubbing her neck and throat during the seizures so wele see what happens, nothing so far. Today I have to have someone go get my blood testing equipment from medical supply so that I can be trained to use it before I leave the hospital. Then I have to have someone go and buy me a gram scale with a power cord so that I can learn how to weigh all of her food and mix it right. They said that it has to be so exact that measuring scoops arent accurate enough. Im hoping my Dad can hook me up since hes bringing the new carseat for Baybe that just arrived. It was normally 800 bucks but we got it for 500 and it is the kind of carseat we had to buy to be legal for Baybe. It is designed for disabled children, goes up to 105 lbs and exceeds all safety standards. Yahh Im excited to see it, I think its gona be hoooge. So now Im dealing with the fact that Baybes oxygen should be at 100% and it is chilin closer to 90 which means for some reason she is not getting full oxygen. Im thinking thats shes playing that super sedated game again. I found out that my favorite Doc is probably gona disapear for a while and that sucks. His name is Jason and he has seen Bayeb almost everyday she has been at Ohsu two months ago til now. I guess he just started in the area right before we got here but now hes moving onto another section I think in the stroke dept. He is a resident neuro so he will someday have his own neuro clinic and maybe Baybe could one of his first patients. I like him not only because he is the most consistant piece to Baybes care that she has ever had but mostly because whether or not he relaly does, he makes me feel like he cares about her. He listens to every word I say and never makes me feel dumb for asking a million weird questions. (so what I think people should eat there placentas, Am I really the only one that thinks that?) Thats a subject for later. I am realy happy with the team of people here at OHSU. They are all very smart and very caring people. I have now officially had every single pediatric neuro in the hospital working with us at one point in the last two months. Each neuro I meet, I like for there own reasons and all of them together Is really cool. Now Dr ROberts is back from wherever he has been and is seeing her again. He actually is her mane neuro now I guess but he hasnt been here for a while. Thats why Im so thank ful that I had Jason to be that one consistant peice to the puzzle..JPG)
So doc just came and said that I cant take her off for more than thirty min and then check her sugar and if it lowers again than she cant come off at all. And we are getting a new batch of formula to try and fix the damb clogging. Oh yeah and did I mention that I have to get to work on my school work now? Im still going to school online from the hospital. Im taking 12 credits consisting of Speech, Supervising, child health safety and nutrition, and 2 MSD classes. I am doing ok so far this term I just cant believe its almost midterms next week. Its the project parts of the classes that Im having the hardest time with because they require the most long spans of brain power and train of thought. Then theres my other two babies Layla, and Taylor. Layla is 11 an Taylor is 9 and they are both having a very hard time. They cry to me everyday wanting to be with me and wanting to be at home. They have beem bouncing around form my parents to my sister and up here at hospital with me on weekends so they are running ragid. They both beg me to have alone time with me and theres nothing I can do about it right now. Its very hard on my heart. They act out by over emphasising injuries and fightingwith eachother to get attention. I hope and pray that I get ot go home this week so we can be together.
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