Here we go again...

I was just going about my day yesterday, minding my own business and dealing with emails from Ethan's teacher when I get a phone call. It was the Endocrinology dept at the Nemour's Children's Clinic. They were contacted by Dr. Canady (Emily's neurosurgeon) and told that Emily needs to be seen RIGHT AWAY by an endocrinologist and she asked if I could come in the next day. Hmmm, I wasn't sure what to make of that call. Usually, it takes weeks, if not months, to get in to see a specialist, but sure, we'll be there.

Now, back to Ethan's teacher's emails. She contacted me because Ethan had been complaining of not feeling well. He is battling a bit of a cold right now (very minimal), but it has his asthma just going crazy. I have had to tell his teacher for the past two days to send him down to the nurse for breathing treatments to help loosen him up a bit. His oxygen levels are staying good, though. It is just some tightening in his chest. I really am surprised that he is doing so well. It must be the new meds he is taking that is keeping it from getting worse. Usually by this time he would have already been in the hospital or at the very least been on steroids. So far, so good.

Okay, now I'm going to fast forward to today's appointment with the endocrinologist. I'm going to try to make this as brief as I can. And honestly, it will probably be because I am still trying to understand it all myself. In a nutshell, I was told that it is POSSIBLE that Emily could be dealing with some pituitary gland problems. The pituitary gland is located in the brain and it controls so many different functions in the body. The strange thing is that Emily has several things going on that could raise a red flag and indicate that there is a problem. And then again, it could be that there is a logical explanation for each individual thing. Some examples are the things that we have battled with her since birth - chronic constipation, slow growth, lack of appetite, easily dehydrated, doesn't recognize when she is thirsty, etc.

Now, if she has a hormone deficiency in her pituitary gland, all of these things could be explained at once. And they could also be corrected. But the other thing that I can't quit thinking about is that all of these things can have other explanations, too. We were always told that her chronic constipation was probably due to her CP (and also probably her diet, too). Her slow growth has never been a concern because she has always been consistently on the 3rd percentile. She is just petite. Her lack of appetite is probably just because she is little and doesn't need much. Kids who have hydrocephalus DO easily get dehydrated. That is a common and known thing. Now I don't have a reason for her not recognizing when she is thirsty. That one has always baffled us. But I think you can see where I'm going with this. We've always had very legitimate reasons for her "problems".

And that is what leads me to my next dilemma. To test or not to test? I'm not even sure why I am asking that as a question. Yes, I'm going to get the test. It is just hard to think about Emily going through more stuff. Just today she had to have another blood draw while I had to hold her screaming in my arms for them to do it. Never mind the fact that she had the Emla cream on her arms and she shouldn't have been able to feel it. It was the fear of it. The blood draw today was to test for the thyroid. The next test is the biggie. She will need to be NPO after midnight and we will need to be there around 8:30 in the morning on the day of the test. They will actually place an IV line with 3 ports on it in her arm. She will be awake for the procedure. They will inject several different sets of hormones in her body and then do blood draws to see how she responds to them. This will determine whether she has any deficiencies or not. Unfortunately, we will not get the results from the test until about a month after the test is done. I know this test is just one stick and just like an IV, but my gut is telling me that this isn't it and we are chasing at something that is way off base here.

And this is where I struggle the most. How much do I continue to put my child through to fight for answers? I'll admit when there are days when her "headaches" barely seem like headaches at all and I have even questioned her on them. They are more like nagging little disturbances that are just annoyances that get in her way for a few moments. She gets over them quickly and continues on. And then there are the ones that are the biggies. Those are the reasons why I continue to fight.

Going to this appointment today didn't give me answers to any of the reasons why I even started my quest when I saw the neurosurgeon a couple weeks ago. Well, I guess it did give me one answer. This doctor happened to have the MRI report with her and she read it to me. It says that the shunt appears to be working normally. Well, I really expected that anyway. What I originally went to the neurosurgeon for was to question whether or not the flow needed adjusting. It was while we were talking about other things that she felt like this endocrine consult was also needed. I feel like these are two totally separate issues, but this doesn't address the problem at hand. I'm still waiting to talk to the neurosurgeon myself. Hopefully I'll get to do that tomorrow.

I will end with a funny little story. I think many will remember the incident when the lab messed up with Ethan's lab work that was such a TRAUMATIC blood draw and I had to have the blood drawn again because of the screw up. Remember how I made the lab manager get out of the meeting to come down and witness Ethan get a blood draw because I felt like he needed to see what the children have to go through each and every time his lab messes up? Well, when I walked in with Emily today to get the blood draw, the lady sitting behind the desk remembered me and was soooooo happy to see me. Her face lit up and I thought she was going to jump and up down with excitement while she was telling me how much fun they all had telling the stories around the lab about what I did by making their boss do that. She said that I was so popular down there. She was cracking me up!!!! You know what? I think I made my point then. They all knew who I was. They all knew WHY I did what I did. And I bet they did put in some better quality control measures after that for the people working back in the lab running the tests so the poor girls up front didn't have to deal with anymore irate parents and screaming and scared kids! You just have to stand up for what's right!!!!