Day Two back at OHSU

So this day sucks so far. We woke up all night because they mixed the formula with cold water again and the pump clogged repeatedly. I was so delerious that at one point I got up and shut it off. I am dealing with my monthly friend and no sleep and alot of stress which is not a good combo. I started trying to do school work and everytime I started then a new doc would come in and ask a million questions. I felt at one point like I was in a scene off of scrubs when a group of docs came in and they were all listening to her lungs and breathing. One doc held the stethascope under her nose to listen for a second. The one doctor said now who knows why she held that under her nose. They were all stumped. One said to listen for congestion in her nose. I raised my hand and said that sometimes when you hear congestion in the lungs it can be an echo off the nose area or the tubes coming down to the lungs. So you want the nose breathing to sound different than the lungs so you know your not hearing an echo. Ha She said that I explained it perfectly. I still had no familiar faces today and I started to get a little overwhelmed. THey didnt know anything about the keto diet and they didnt have the supplies ready that I needed and no one knew anything about her at all. I started crying and told them this is alot to deal with and usually when a parent ends up here with a child it is after several days of sickness and most likely some nights without sleep and I really felt like they werent helping me out. The nurses I had before were so sweet and helpful and real down to earth people. So they have given me crap about having a sprite which I was offered everytime I have ever stayed here. They had no sterile water on the floor which is crazy in a hospital, last night they told me that I couldnt order dinner cause it was too late and today I saw a sign saying that people could order dinner all night now and the grill was even going till 11pm, We were put into a room with a rocking chair and a guest bed all the way across the room so I had to rearrange the room and move her and her equipment over by me. all in all Im just really cranky about this visit overall. I called Kristy Heeley and she was sooo sweet and calmed me down. She explained that we r under the care of pediatrics instead of neurology so thats why all the new faces, and thatshe would have someone I knew come see me to make me feel better. She said she was thinking of us and would come by tomorrow. A new neuro DOc came to see me and I almost started crying again because I only wanted to see neurology for a familiar face and she was the only neuro fellow that I had not met. She apologized for not being Jason and explained how the rotations work but that Jason and Dr roberts would still be following her care. Kerri Stuhlsats her Ketogenic Dietician came to see us and Iwas like YES I know you.(She looks exactly like Pam from "The Office") We had a good talk and she said if Steve form speach therapy approves it we can start giving Baybe a few licks of some formula or keto cream or maybe even sugar free jello. Havent seen him yet still waiting. We have tried several times today to take her off the oxygen to see if she will breath on her own and have had to put it right back on but as of now it has been off for a half hour and is doing great at 95% oxygen. Her ketones are still good and high and her blood sugars are going back down closer where we want them. For now I guess there not letting us leave until she is breathing good on her own and is getting better not worse. Hoping by tomorrow.

Today after my mini breakdown I tried to get into my school work and I was thinking, What am I doing. Baybe is sitting here struggling to breath and all she has is me. I should be holding her and loving her. What if something happens to her and I would never forgive myself for not spending this time focused on her. Not to mention my other two children. I am gona be so screwed financially now but I did it, I dropped my classes and took a medical leave from school. I cried really hard about that. I just feel so defeated. I was doing so good too its not like I was already failing, I was just taking too much time from her and overwhelming myself. I got it all set up for whenever I decide to come back I can continue on my path. For now I have all the free time for the kids and Im broke. I would rather be broke then to not be there for her anymore. Shes sittin in my lap right now helping me type on my crappy laptop. The stupid space button got stuck and when I tried to fix it I ripped it off accidently kinda. Hence the words with double spaces or no spaces at all like before. I gota get one of those mini laptops so I can take it wherever we go easier. This laptop doesnt even hold a charge so Im power cording it everywhere.

Hopefully we wont be hospitalized for too long this time. The diet is going great, we just have to figure out why the breathing problems and hope its just a bad virus. Im not trying to go home with and oxygen tank and a nebulizer machine. Send Baybe your prayers and hope she recovers soon so we can get on to new things like removing some medicines.