We saw the endocrynologist on August 2. We feel very good about having him as Sydnee's doctor. He was really impressed with our pediatrician as well. She had done all the initial blood work and testing that he would have ordered after our first appointment. So he was happy that since that had all been done, we could move on to the bigger tests. He said she is definitely way behind what she should be, and growing below the minimum standards per year. He told us the next step was to do a Stimulation test, which he only trusts 2 people to do. They quickly got us scheduled for Aug 19 to have that done. It was a really tough day. Sydnee couldn't eat and we didn't tell her what was going on until we were in the car on the way to the appointment. They put an iv in her arm, and throughout the day, I think they took blood around 8 times from it. Every time after that, she would have to have saline put into the iv and she hated that. About midway through the test they had to give her a shot of medicine in her other arm. I felt so terrible seeing my daughter go through all this. I had brought her backpack full of crafts and activities to do while we were there but she ended up not wanting to do much. She was just so unhappy. They told us the results would take about a week.
Meanwhile, in between there, Sydnee had her annual cardiology test on Aug 15. Thankfully that went well! I was so glad that one thing went smootly. Although, it was the first time that Sydnee didn't want to go to her appointment. She wanted to know why her sisters got to be with Grandma and she didn't. She wanted to know why she's the only one who has to go to the heart doctor. I always explain as much as I can, but it's hard for a kid to understand.
On Aug 21, Sydnee woke up and told me her pee was a funny color. She showed me and it was bright red. I of course panicked inside my own head and started calling doctors to find out if any of the medicine they gave her at the stim test 2 days prior would do that. They said no and to take her to her pediatrician. Of course it was our doctor's day off, so we saw someone else. She had to give a urine sample (she couldn't get much, but it was pure blood), and then they sent me to the hospital to have blood drawn. I almost lost it and started crying right then. I couldn't imagine getting her poked AGAIN after just having that horrible test 2 days before. But they needed to make sure her kidneys were ok, so I took her. I told her I would take her to get a prize after, but once we got in the car she said she just wanted to go home. It broke my heart to see how unhappy my baby was. They put her on antibiotics just in case, and it cleared up in about 1 day. But then they called and said to discontinue antibiotics because all the tests came back normal. It's still a total mystery.
On Aug 22, the endo office called with results from the stim test. She said Sydnee is not producing growth hormone. I wasn't suprised, but at the same time I was upset. I knew this meant more for my sweet girl to have to go through. They said the next test was an MRI on her pituitary gland to make sure there were no defects or anything. Surprisingly, that was scheduled for the next afternoon, and I took it because I didn't want her to miss school, which was starting the next week. They had to sedate her, which meant making her starve all day again, and more needles again. I didn't sleep the night before. I just felt so awful. The day of the test, she whined all day about being hungry and shaky. She wanted to know why her sisters got lunch and she didn't. I tried to keep her mind off things, and we played all day long. But she wasn't happy about going back to the doctor. She cried and cried in the car. I sat next to her and tried to comfort her. I looked at her already bruised arms from all the tests and blood work she'd had done in the last week, and it was really hard to hold myself together. I feel like she looks at me to protect her, yet I am taking her to all of these doctors and letting them poke and prod at her. I know she can't understand that I'm doing it so she can have a better life. I want her to grow big and strong, and most of all be healthy. But when I talk to her about it, she doesn't seem to care if she never grows again. She just doesn't want any more needles.
The beginning of the MRI appointment could not have went worse. Sydnee was crying and clinging to me when she found out they were going to poke her. I had to hold her on my lap while 2 nurses tried to put an IV in her hand. Apparently, it didn't work. So they took it out and tried on her wrist. That didn't work either. They were poking her for nothing and I was the one holding her while they did it. Jeff tried to take a turn when he saw my tears, but she wanted me. And as much as I wanted to not have to do it, if she needed me I wanted to be there for her.
They ended up calling in the IV team, and they got it on the first try. I think I overly thanked them, but I was so greatful that it was over and they didn't have to poke her anymore.
After the IV was in, they took us to the MRI room and hooked up the meds. We got to be with her until she fell asleep and then they told us it would take 45 min, so we went to the cafeteria to get a drink. We were only gone about 20 min, but when we got back they said they had just got her out of the machine. So we sat with her while the nurse woke her up. She ate a popsicle and some cookies, and did really well so we didn't have to stay in recovery for too long. She of course was groggy and fell asleep on my shoulder on the way home. We were all so glad it was over.
The MRI came back normal. So now we wait until sep 16 when we go back to the Endo to start treatment. It's going to be a very very hard thing for all of us at first. But I know she will get used to it, and I just really hope that some day she can see that we didn't want any of this to happen to her. We love her so much and this kills us. We want to protect her and take all her pain away. Unfortunately, life doesn't always go how we hope, and we will have to learn to make the best of it.
