Day 5... technically
As of the end of day 4 I can say, Today was a good day. Blood draws are down to once a day. 6 AM. They sure know how to wake her up! They removed the food from her feeding tube last night. She is getting enough food down. So now its just water. I guess they are taking that away sometime during the night. Not sure why yet, or if the tube will stay even though they arent using it... just in case?
After our check up with Dr. Moshtael we felt pretty good. There is a long road ahead of us. But we are doing the right stuff. They really listen to us. It is highly believed the medication C is taking for her supposed ADHD was thought to be the highest culpret. Where I dont deny it had absolutely nothing to do with it, I dont think it is what is to blame. We are about another 8 hours or so from the medication being out of her system completely. Her hunger is back up. (she ate ALL of her dinner. A grilled cheese, crust and all, and a full glass of whole milk.) I know it doesnt sound like a lot, but for her, its huge. She complains about being hungry even between meals. She even falls asleep at night. Tonight's bedtime was 8 on the dot. It has been a LONG time since that has happened. We will have her re-evaluated for the ADHD with proper testing. I was rather silly to put my faith in a Dr. who supposedly knew what she was doing. Not only did this Dr. not do any psychiatric testing, but she perscribed a drug to my child that was ultimately killing her. Even during each monthly visit, I would ask, "Is it ok that she is losing weight?" "Oh, she's fine. Just let her adjust to the medication." Shame on me for not doing more homework. I wanted a solution for her in school... I didnt want to kill her. I am upset with this Dr., however, no one is to blame more than me and Jon for not reading more up on things. If there is any advice I can give to young parents, it is that. DO YOUR HOMEWORK. Get a second opinion. Never settle.
Still working on the diagnosis. We will have Dr. Moshtael again tomorrow and I believe Tuesday is when Dr. O'Toole comes back? The nursing staff here is amazing! We are truly blessed. No rain yesterday or the day before.... I worry that is coming to an end! :) Jon will be leaving today. We will check out officially of the RMDH until further notice. C is sad for her daddy to go. "He just brings a different kind of joy to the room", she said yesterday. I am going to miss him as well. The support is so great to have. Plus during the week starts parent group therapy. If the other parents agree to it, Dr. Moshtael says we can Skype him in. Hopefully that goes well. This week C will also get to start school here in the hospital. There are also MANY other activities happening. Keep checking back for all the fun details. Keep praying we keep moving up. Thank you. Thank you
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