MRI

Well, we dropped Julie off at her Grandma and Grandpa Taylors at about 7:30a.m. and headed for Primary Childrens for Melanie's MRI at 9:30. Made it there by 9:00. She had to fast for 6 hours before so we got there and they got started and then we waited for our turn. It was a little tough to keep her happy, but she did pretty good.

 Then, they came in to give her an IV, she hates having her hands touched and her feet and so she didn't like this part at all. I didn't also, got a little teary myself watching them. She really was not to happy after this and I bounced her for a while. She eventually settled down and was tired enough that she just relaxed on my shoulder.

Then it was our turn and we took her into the room to get all set up. She was so tired and the medicine they give will usually sedate patients within 10 minutes. She was out before 5 minutes, I didn't even realize they were giving it to her until I looked down and she was asleep in my arms. I laid her on the bed and she was out enough that they started putting ear plugs in and getting her all situated. Then it was waiting time. The procedure takes about 30 minutes or so.

So we went to the cafeteria for some lunch. I loved the cafeteria, they had a variety of options and Rob got the hamburger and fries, and I got their Chicken(don't know how to spell the last part), over rice barley?, and zucchini and carrots with a roll that was so dense but so soft. It was yummy, and for hospital cafeteria food, it was awesome. I will definitely go again next time we are there. Much better than going to get fast food.

We came back, and they had just brought her out into recovery. She was a little awake, but not too much yet. Giving her sugar water here.

So, I forgot to bring the lab work that the doctor sent home with us. You think they would have had it on file, but no. So I walked down the hall a bit and grabbed it and brought it back. Should have done when they were first pricking her for the IV, we were going to have to go to Outpatient Lab, but they were able to come do it in recovery and luckily they didn't have to poke her again, they just took it from her IV. During this whole time she was screaming(like high pitch screaming), I felt bad for the little patient they just brought out, luckily he was still really sleepy. Finally they had what they needed and we were able to take her, we fed her some milk that I had brought, and boy did that make her happy again.

We then went to the Outpatient Lab to get a urine bag put on her to catch a urine sample. Then we decided to wait around for a hour or so to see if she would pee. It had been a long while since she had  anything to drink besides the IV and her milk. We waited in this lobby/sitting area. We were just sitting there and I look up to see this beautiful ceiling above me, this was just a small section. It was amazing. So, I finally go change her and realize that she peed but the bag did not catch anything, blah. So I took that one off, she hated that. I put another on and we decided to go home and take it to the hospital lab at home.

We get almost to Brigham City and get a call from my mom saying that Primary Childrens has been trying to get a hold of us(my phone was apparently on vibrate), and to take Melanie to the ER right now. Okay, if that doesn't scare you a bit. So, we hurried and called Primary Childrens's and talked to the doctor on call. Apparently the blood work showed that her blood glucose level was low, low enough to take her straight to the ER, she was acting normal, didn't fall asleep like they said she would on our drive home. She was happy as can be. So, Rob talked to the doctor and explained that she hadn't eaten anything since the night before at 8:30p.m.(should have waken her at 3:00 to feed her), and the doctor said she was probably fine and so we didn't go to the ER, but told us to watch her. So we stopped in Brigham City and got gas and then drove home. She was fine the rest of the night and one happy little girl.

We changed her when we got home and still not a lot of pee, so we left the bag on and before bed we got enough to call it good. We put it in the fridge and Rob took it to the Lab here the next day.

The doctor called me with the results the following Monday and said her MRI came back normal, and that her protein was low, and her iron. She asked how she was doing and said we probably should talk with our doctor about talking with a nutritionist. Some of her lab work hadn't come back yet also. We met with Melanie's pediatrician the next day and discussed things and told us to try PediaSure or Instant Breakfasts, and to give her eggs, beans with her quinoa. He gave us some samples and also discussed talking with a metabolic specialist about her blood work. The only thing with the food is that she won't eat eggs, occasionally she will eat  beans, she didn't like the PediaSure even after I diluted it a TON, so we have been slowing adding Instant Breakfasts into her milk. Started out with a 1/4 teaspoon in 6 ounces of milk, we are now up to just over 1 teaspoon. 

We are so glad the MRI came back normal. Next is her Genetics appointment next month.