Off to see the awaited Endocrinologist today. She was a wonderful doctor and listened to me for almost 30 minutes, did a very thorough exam of Dylan and told me honestly that she was going to have to take his chart in front of the panel and have a discussion about his case. This is the first child she has seen with WHS and the youngest child with osteoporosis. She wants to find the best treatment for him to give him the best chance at a great life.
We talked a lot about his diet and his lack of weight gain in the past 2 months, but remember in the last 2 months he has had spinal surgery and been in a body cast - poor baby has been through a lot. She wants him to be on a high protein/high fat diet. I told her that I just recently have been mixing in coconut oil into his food - which she said was great, but she also wants me to try whole fat Greek yogurt and whole fat cottage cheese mixed into his food which are high in protein, calories and fat. I told her I also just ordered Duocal supplement and am awaiting its arrival. She also wants me to offer him whole milk at every meal since he no longer will take the bottle. The tough thing about the milk is that sometimes he wants it and other times he doesn't and will just spit it right out, so I told her I would try my best.
She then ordered a list full of labs to see what is going on inside his little body. She wants to see if he is deficient in vitamin D or calcium, phosphorus, etc... she wants to check his thyroid and his urine. So off I went across the street to the lab. I then signed in and proceeded to wait for over a half hour (with only one other person in the waiting room I might add), until they finally called us up looked at the lab slip and said "this is going to take a lot of blood, we can't do it all in one day." I said fine and told them to just draw what they could and I would bring him back in a day or two. Then they said that they didn't know which one to do first and wanted to call the doctor to find out which lab was a priority (which now the MD's office was closed for lunch). I told them that they were all equally important and it didn't matter which one they did first as long as they all get drawn. To make a long story short they refused to draw his blood because they didn't know which lab to draw first and he looked like a hard stick. As they are telling me that I am out of luck and will just have to drive down to San Diego, numerous times I might add, I started to get so mad and frustrated that tears started to well up in my eyes. I am totally embarrassed by this but I couldn't help it. I just want to find out what is wrong with my son and they wouldn't help me. They said that maybe I could come back later or another day, but I said "NO I am here now and I have been waiting now with my crying child for an hour and these labs are VERY IMPORTANT to his diagnosis and treatment." I then told them thanks for nothing and stormed out of the office. I am mostly frustrated at the incompetence, if you are working as a phlebotomist you should be able to draw blood! Am I wrong? When I am working in the hospital the people in the lab are the ones that I call when I can't draw someone, and let me tell you that is not very often - I am a great stick. They should be great at this skill because it's all they do all day. ARGHHHHHHHHH!!!!!!!
After I got home and stopped crying I called the doctor's office and explained what had happened. They were shocked and told that they won't be sending their patients to that lab anymore and gave me numbers of two other labs in the area. At least I will be able to go somewhere local and not have to drive over an hour for blood work. :)
To sum up this post - it will take about 2 weeks to get all the blood work back and for the doctor to discuss Dylan's case with her colleges. She then will decide which medication and/or supplement will work best for his condition and any other treatment or therapy that may be needed. Being that it is now about 3 hours since I was in the lab I am now over my crying fit and am ready to face the rest of my day - I think my prego hormones have something to do with this emotional outburst because I have recently been easily frazzled.
Sorry no pictures today, but I will make it up to you all.