Monday, February 28, 2011

Finally... an endocrinologist

After over a year of trying to figure out why my little Slobber Rocket isn't growing very quickly I think we finally got to a doctor who can help us. She is a bit over 3 hrs away at St Louis Children's Hospital (an absolutely beautiful and amazing facility created just for little ones) but she is committed to making sure he is okay and I really like her. We took Slobber Rocket to see her for the first time on Friday. She did a very thorough exam on him. Measured his height, weight, head circumference, wing span, inseam... hands and feet. Anything you can think of. A whole lot of history questions. A lot of poking, feeling and making sure he isn't sick and all of his organs seem okay. Lots of looking for signs of dysmorphic features that would indicate a congenital disorder.

Then... music to my ears... or well music to my ears was at the beginning but I didn't want to tell the story that way. :) She said "well, this is not a nutritional thing, his BMI is good... he is just so short that he doesn't NEED to gain weight". I know, that seems like a "duh" to me too but if you have kept up with our story, I have been told numerous times that he just simply doesn't get enough calories. I must say our ped has stuck it out with me and worked with me when I insisted the gastro was wrong so I can't blame her much. Anyway there is something going on with him and now we are working to figure it out. She assured me that we were in the right place and that she would help us.

Anyway the basic plan of action is to make sure he is systemically okay. He had a urine collection and blood work while we were there. She is testing for diabetes, thyroid problems, celiacs, for some byproduct hormone issues (basically a screen for a hormone problem since growth hormone isn't available at all times during the day), kidney issues... I think that kind of covers it. If any of those tests come back abnormal we will deal with it. If his screens come back abnormal then she will have us come back up very soon and we will do what is called a "stim test" (short for stimulation test) where SR will be hooked to an IV, given medication to stimulate growth hormones, and have blood drawn over the course of about 3 hrs. If the hormone screens are wonkey, he will also likely have a brain MRI to make sure his pituitary glad is okay. If all of that is "normal" we will go back in 5-6 months for another set of measurements and then again when he is about 3. If by 3, he is not growing and is still very low on the growth chart in height, we will do the Stim test then and she will recommend hormone injections for sure at that time whether he has an identifiable hormone problem or not. She said by 3 children will likely never catch up to their peers without help. Which is not a problem if you are going to be 5'5" or 5'6" but we have to decide if we are okay with him being 5'1" or so as an adult and weigh the pros and cons of that. The injections may only give him a few inches or 4 or 5... it is kind of hard to tell. So there is a lot of option weighing.

But I did leave feeling reassured that I know my kids the best and that if I keep fighting for them then I will get them what they need. I also left with a renewed sense that doctors are humans and it is absolutely okay to challenge them when you think they are wrong. I think so many people elevate doctors to some position of be all, know all and really they are people. Yes, people who have studied a lot about medicine, and their field but still people. And intuition seems to have a good deal of weight and parents are the best source of intuition. So challenge your doctors. I pretty much always want my doctor to prove things to me. I know I am a pain in the neck sometimes but they couldn't prove to me that SR was malnourished or FTT so I refused to believe it because I know how we take care of him. And if they could prove that he was malnourished then they were going to prove to me why. Does he have an allergy, an illness, or a metabolism problem? That is a bit of a tangent but I do think we are our own best advocates and certainly the best advocates of our children who otherwise can't easily speak for themselves.

At any rate... we left with one of the best doctors in the country saying he is absolutely perfect health wise but that now we need to figure out what is going on in his tiny body and causing him not to grow. So forward we go. It kind of seems like we will be getting to know St. Louis Children's hospital a bit over the course of the rest of our tenure in Illinois. And I am okay with that. Dr. A is an intelligent, bright young doctor who really seems to love children and wants to help us figure out what is going on with our son. I will take frequent 3 hr drives for that :)

Monday, February 21, 2011

Damn Knee

Just got home a bit ago from seeing Patty the ortho NP. My MRI was a bit of a mess. Lots going on inside of my knee. Bone contusions, torn meniscus and as the radiologist puts is my acl is "likely torn". Likely because they couldn't see the part very well that seems like it is torn. SO. More time on crutches, more drs, and I am guessing at the very least a scope on my knee to get a better view of my acl and see if the meniscus damage is going to inhibit my mobility at all. So there you have it. Next tuesday I will be seeing a new doctor to figure out what we need to do. So I will be out of athletics for a bit. I will have not nearly enough time to pick up training for the half EVEN IF I don't need surgery. There is no way. Just so frustrating. I am hoping PT is miraculously all I will need so MAYBE I can get back at it by softball season. *sigh* I am annoyed.

Wednesday, February 16, 2011

Reality bites

I had some tests done today at the hospital. I ended up spending over 3 hrs there this morning for the testing I needed to have done. While it did bite... that isn't the reality I am talking about. As I was waiting for the lab to call my neurologist in peoria about some bloodwork I needed... an older man came in with his family. He was with his son and some lady that referred to him by his first name... Jack. Jack was 70 years old and has liver cancer and a lifetime of smoking has eaten away at 2/3 of his lungs. His cancer is bad. Reminds me of how my family felt when Mr. Wonderful's grandpa got sick. Jack was given 3 months, tops, to live. His family was very sweet and chatty. Jack was quiet and slowly sipping his coffee... looked like he was thinking some big thoughts and just listening to the 2 people that he loves talk to me and discuss things. Just contemplative. You could tell he was thinking about deep things. Life and death, his tests, his family.

About this time the phlabotomist comes out to speak to Jack and his family. She tells Jack that his insurance will not cover 2 of his tests. The total cost he would be responsible for was roughly $700. One of the tests was very important for his doctors in trying to help him be comfortable and possibly receive treatment for his illness. He got a bit angry and irritated and said "I guess I will just go home. I don't have that kind of money." His family convinced him to go through with the testing and promised him they would figure out how to pay for it and he needed to try and not worry about all the details. Then, this is where tears started streaming down my cheeks... I was trying to hide the fact that I was listening but my heart was breaking in a million little pieces listening to this. He looked up at the tech and said "It is just horrible that someone works hard their whole life and when they get old and sick... people just want them to hurry up and die. I just need people to care and make sure I get the help I need". The lady speaking to him was very sympathetic and sweet. But I think everyone in the room was crying. He was telling her hw he worked for 56 years as a truck driver and how he was a good man and paid his taxes and did the right things and now he can't get the care he needs. There were many sad things about it all. The pain in his son's face, the frail, sad voice of a man you can tell has always been strong and capable, and the fear that you could tell the whole family felt about death. Death was just hanging there in the room. Everyone knew it and everyone was terrified and Jack was just... needing some compassion and help. He was needing to feel like the medical community cared about him... Jack... and not about money.

His friend/daughter in law... whatever she is... was telling me that his insurance would only pay for him to be in the hospital for 48 hrs when he got sick and he was not ready to come home when they sent him home over the weekend. But since he has been deemed terminally ill and has a timeline, his insurance doesn't want him IN the hospital racking up the medical expenses even if he needs the 24 hr care for a week to get his strength back. Ugh... it makes me tear up just thinking about the story again. The emotion and fear in his voice was just so evident and I wanted to run up to him and give him a big hug. "I care about you Jack!" I don't know you at all other than what I saw today but I care about you and I want you to have good care. I want you to be able to feel respected and loved in your last days of life... however many may be left. I am sorry that I didn't let you know myself today that it breaks my heart to see you suffering. A big part of me feels horrible about that.

Thursday, February 10, 2011


Volleyball is my... stay in halfway decent shape so I can play softball... sport. Then the spring comes and I play softball until it is TOO COLD in Illinois to play any longer. Anyway, I am a little grumpy because when playing volleyball on Monday I hurt my knee. Um... not exactly sure what is going on yet but the injury is extremely similar to how I tore my ACL in high school. My left foot stayed planted and the rest of my body kept going. Pop, pop, crack goes the knee... I go down and clutch my leg. And then it swells like a balloon and I can't move it very much or walk on it. I am "non-weight bearing" for at the very least a week and a half. Until after I have my MRI and see ortho again. Of course, that is torture. How do you take care of 2 kids with no hands? I am having a difficult time figuring it out and cheating A LOT. I figure, can I really mess it up that much more? I doubt it. Don't tell my dr. she would kick my butt. But corralling a 2 year old with no hands to help is next to impossible. Putting said kid into the car with no hands is also impossible. Keeping up with Super Muscles is also impossible if I am following drs. orders. So... I am trying but failing miserably. I know as my arms and core get used to the crutches, it will improve. But for now I am annoyed and feeling slightly sorry for myself. And honestly, I am irritated that I hurt my knee playing a filler sport and not one I am even that sold out on. ha. Oh well... I will see what the MRI says and get it fixed. I gotta play sports and stay active or I go stir crazy and I am far to competitive to let my knee stop me from getting back in the saddle. My dream would be that I can be ready for softball but word on the street is that I need to slow down "for a while" so we will see. Me slow down? This woman obviously doesn't know me well. That is my one topic update for today. Hopefully I will blog more updates soon as I am confined to sitting around for a while...