Tuesday, December 16, 2008

Is There a Specialist We Have NOT Seen?

Laura woke up this morning asking me for a "nebbie" with her dinosaur voice. I can't even remember when she needed a neb treatment last...perhaps the end of last winter's season. She has come a long way in her 4-1/2 years from daily nebs 2-3 times per day to now a rare occasion. I am so thankful for her progress as she grows. But it is funny how uncomfortable and nervous I still get when her breathing is off.

Alex has been visiting a physical therapist each week to better his posture and improve the severeness of his headaches. While not helping the barometer headaches we both suffer (which have been horrible the last few days with this weather), his posture is indeed improving. He is also in process of being worked up for GI disturbances. He has had lots of testing done already, and we met with a pediatric GI specialist at the U of MN last week. She was a hoot! The most eccentric doctor I have ever met....I can't begin to explain what she is like...you just have to experience her for yourself. But she is excellent in her field, and that is what counts. Alex will be having an upper GI series during Christmas break....Should be fun.

I met with a new hematologist a few weeks ago for my annual check in regarding my platelet disorder....it has already been one year since off of the coumadin after my PE. That was such a scary event, it still feels like it just happened a short while ago. My old hematologist who has calmed my nerves for the last 6 years up and left for a teaching position in Arizona....he will be so good at that. He was always great at taking much time and explaining things to me when I was nervous, which is always what I needed. I like to know as much information as possible to increase my comfort level. Especially when we are talking about live and death circumstances. He was also a big guy....seeming about 7 feet tall, and from someplace like Nigeria...Once I had gotten use to his accent, he was a total stitch!...and very smart, too. This new guy lacked the charisma and charm of my other doctor, was old and boring, and spent about 3 minutes with me. I had to ask him if we could check for that nasty Lupus anticoagulant in my blood, and he said, "Sure". I was very pleased that it is currently missing, but not so pleased with this new doc.

Melissa saw a pediatric cardiologist today. He was wonderful! Young and friendly, he reminded me of Melissa's current teacher at school who she likes so well. But actually, there is not a single cardiologist I have met that I have not liked. I think there is just something special about that specialty. They have a great amount of people skills as well as intelligence and the ability to communicate well. If I ever have to go back to work (Heaven forbid), I might even choose to go back to cardiology rather than Labor and Delivery. It just was so much fun to work with good docs I could respect.

Melissa had another incident at school last Thursday where she complained of chest pain and her heart feeling like it was going to fall out. She had been doing tripods (modified headstands) and cartwheels, as well as somersaults in gym class when it happened. Even as a baby, she hated being flipped around, where most kids giggle with glee. A few years ago, the teacher's aide called us because of a near fainting episode while she had been pushed high on a swing (they were concerned it had been a seizure). There have been other episodes where Bob has thought Melissa goes into some SVTs (a very rapid heart rate), and they seem to be related to position changes. Last week, the nurse did not check her out, but just told her to rest. No one called us, but Melissa relayed the story when she got home. Bob was furious, to say the least, and gave the school nurse an earful the next morning on the phone.

Melissa was a champ as she laid quietly for her EKG today. She had had a heart echo 4 years ago when her chromosome abnormality was finally diagnosed, to simply rule out the possibility of any heart defects at that time. She had had no symptoms back then. Today, her EKG showed some very mild abnormality. We now need to rule out a serious condition, WPW, vs your garden variety SVT's which I had been diagnosed with when I was 25. With the slightly abnormal EKG reading, it could go either way. She was sent home with a heart monitor that she will need to wear, with a button she needs to push if her heart has any symptoms. The monitor will then record her heart's activity, and we will send it by phone to be analyzed. We had to send a baseline in tonight, and it is pretty amazing.....a series of sounds, like a fax machine is transmitted through the regular phone receiver. Wow...technology!

Hopefully we can recreate her effects, and then she can be done with the monitor and we will have some answers soon. If not, she may have to wear this for a few months. She is so nervous about wearing it to school under her shirt and being different. I devised a soft pouch for her tonight to keep the cold box from her skin and to keep all the cords tucked inside. I assured her that I would explain it all to her teachers in the morning. My poor little girl....hopefully all will turn out well.

1 comment:

Alison said...

Wow, that's scary. Poor Mom and Dad. Poor Melissa. What a scary thing. We will be thinking about you and hope for the best.