Time Flys..

     Wow, its been over a month since I have posted a blog. I have had a lack of creativity and urge to write...
So much has happened, I am not sure where to begin...Obviously we didn't stay home long a little over 36 hrs. I called up to Doernbecher's to tell them what was going on with Rorie and they said take her to the ER. I got her ready to drive to Salem ER. We were almost there and then traffic started slowing down and I just could see a big, long line of cars and flashing lights at the very front. There was an accident. I pulled into the gas station and called 911. The beginning of another admit into the hospital. Wonderful. One of the hardest things is being teased with going back and forth between the hospital and home so much. Which has happened a lot lately. I think I have finally learned to never unpack. D.B. is more of a home to us at times then our "real home".
     This time we were admitted because Rorie was fluid overloaded so it caused respiratory issues. Finally what I have been dreading, the problem was her heart. Her heart is no longer protecting her lungs as well as it once was. The pulmonary artery is letting to much blood flow to her lungs. The diuretics weren't doing a well enough job to keep fluid off her lungs either, so therefore made it very difficult for her to breath.
     I have been getting so tired of going back and forth to the hospital. I couldn't handle anymore "I don't knows" to my questions or not getting things done that needed to be and not having the doctors and nurses listen to me. So, I got the idea of looking into second opinions, more options, more brains, better resources. Rorie's aunt Melissa helped me with this and she got CHOP involved. Children's Hospital of Philadelphia. Answer to prayer! They have a center for 22q deletion. Which is what Rorie has. Well just telling the doctor's here a Doernbecher's, made them kick into gear too and I started getting answers. I guess you just have to make people feel a little threatened to make them listen. :) Rorie was presented that Friday at a conference for upcoming heart surgeries. I got news that she would be having surgery in a few weeks at the first opening they could find. Rorie was finally stable and we were transferred to one of the main peds floor to wait till she could have surgery.  I was anxious for her surgery but so not ready for it at the same time. It was hard to imagine she would be having her chest opened up for the first time. This was going to be her first major surgery. I could grasp it was really going to happen. I wanted to not think about it, but the more I tried to forget it, the more it got brought up and I couldn't stop thinking about it.
     A few days later Rorie began dry heaving. First thing I thought was she wasn't handling her feeds. So I stopped them and vented her(burped her through her feeding tube, it take the formula and air out do nothing is in her belly). This didn't stop it. So maybe withdraw? The Dr's order some IV drugs to see if it would help, and it did but it didn't last long. This went on for about a day and a half and then she just stopped. She continued to be fussy hard to comfort. Then one morning Rorie's respiratory rate had dropped really low and we were just watching her really close, her O2 levels remained good. I was watching TV and out of the corner of my eye I saw Rorie under the blanket shaking it looked like. I got up and looked at her and she was breathing very strange, like when a little kid gets really upset and they cry so hard they do the, "ah ah ah" breathing. That's what it looked like but Rorie was sleeping her eyes were closed. I called the nurse in. She pulled the blankets off Rorie, her eyes opened but she wasn't moving otherwise. I tried to get her attention, but nothing. Her eyes wouldn't move her body wasn't either. She was having a seizure. This one was one of the worse ones I have seen her have. It took her a few minutes to snap out of it. Than she went right back to sleep.
"Ugh, not this again." I said. Another problem, we don't need. Why does this always happen? Neurology was consulted. They weren't to worry because she could have lost her Keppra dose(seizure med). The following day Rorie was doing really great and the speech and language team came to see Rorie and they gave the okay for her to eat baby food! With a SPOON! I was doubtful that she would eat from a spoon because she had hated it before. Boy, did Rorie surprise me! She took bite after bite of baby food. I am so proud of her! I couldn't believe it. It of course wore her out and she had a good snooze after that.
     November 10th, Dr. Kelly, Rorie's cardiologist came to see us and tell me that Rorie surgery had finally been scheduled for Wednesday the 16th. After he left the room, tears just poured from my eyes, It took me back to the day her first told me about Rorie's heart condition. I felt like I had been hit by a train. I thought to myself, "We have been through SO much this year, and now just two days before Rorie's first birthday she would be having open heart surgery." It never ends... I am on a ride with a blind fold and only half a seat belt, I am hanging on for dear life! This is so hard. I feel weak, alone, scared and helpless. I don't know whats ahead for us, all I know is we have gotten over everything so far.
     On Monday, Rorie started to dry heave again and it was worse this time far worse. The Dr's gave her meds that she had gotten the week before when she was dry heaving. But this time it wasn't working. Not even touching it. First the reason she was doing it was because she was constipated, then it was withdraw or fluid overload, or she had an upset tummy, then it was from her nissan surgery! I knew the Dr's were all wrong I knew it wasn't any of those reason. I knew it was worse and something was really wrong, and I couldn't do anything! I had to yell at a Dr before one finally told me and said, "we don't know." I hate that answer, hate it! There had to be something they could do. My daughter is dry heaving to the point were she can barely take a breath in between and I am told there is nothing that can be done to help her. Not okay! By this point I am crying and trying to comfort Rorie as best as I could, held her, laid in bed with her anything! I was desperate for her to feel better. One Dr, he was a man, he comes in with Rorie's nurse and asked how Rorie was doing. I said, "Not any better." Then he asked me if I thought she was in pain. Shocked by this answer I snapped back at him, "Of course she is! Wouldn't you be in pain if you were dry heaving all day and could stop? I am sure you would. That was a dumb question!" Finally I got through to someone, whether it was him or someone else they changed doses and gave her more meds. It helped but still didn't stop it. I had been in tears those two first days and only had gotten two hours of sleep. I was an emotional wreck and grumpy. At least Rorie was a bit more comfortable. She could rest some-what anyways. I crawled in the bed with her and laid next to her, her eyes were open. She was so tired and exhausted but she just couldn't let herself sleep. I ran my fingers through her hair and she just looked at me. I went to go give her a kiss and I put my hand on her chest, she was burning up! I had never felt her so hot! I had touched her legs, arms and forehead, but they were all cool. I called then nurse and she got a rectal temp, 104.9°F! Dr's were paged, this was all such a shock. The nurses had been doing under the arm temps and she was always fine, they were false readings. How long has she had this temp? I don't remember the last time I touched her chest or stomach  or if she felt this hot. I felt so bad. Blood and urine cultures were taken right away and ice-packs were put on her.
     Then here we are today, the day Rorie was suppose to have surgery. It was postponed obviously. The blood and urine cultures have not grown anything, so we have no explanation for why she had such a high fever. Her dry heaving has also stopped. I am praying they still look for the reason of why this all happened. We don't need it to happen again. We are suppose to get an MRI of her brain, it could possibly be the problem. If her brain is swollen and pressing against something that's causing all this. I hope its not. Rorie is such a mystery to everyone here. Somehow we have managed to be a miracle and a disaster all in one.
     These few days leading up to her birthday makes me think about so much, about how she came into this world. That will be a whole other blog...
But I keep telling myself I can't wait till all these hard days are all just a faint memory. That's all I want them to be is a memory. I want to live a good life with Rorie out of the hospital. I hope we get there soon. Love you Rorie. Love Momma.