The Peanut Gallery

Sunday, January 18, 2009

The Mystery Continues.....

Sunday, January 18, 2009
Just a quick update on Kennedy's Upper Respiratory Infection.....Her cough is finally gone and for the most part she sounds pretty clear. Her nose is still a little nasally, however, we were able to avoid any fever and the onset of pneumonia - Thank God!!!

Last Wednesday Kennedy had one of her monthly specialist appointments with her Nephrologist (Kidney Doctor). The goal per our last appointment was to try to start weaning her from her two blood pressure medications. I was thinking that this was really going to come to fruition because when we were in the ER Kennedy had the best blood pressure reading ever: 74/52, however, my hopes were quickly destroyed once the nurse took her blood pressure. Her blood pressure was 136/64 - WHAT!!!! How in the world could we go from a completely normal blood pressure last week to a blood pressure that was too high. I asked the nurse to retake her blood pressure to ensure the cuff was on correctly. Lets just say we all ignored what the second blood pressure reading was: 165/69.

The doctor came in and was very perplexed as to why this was all occurring. Kennedy's blood pressure is all over the map. It seems like her medication is working sometimes and other times it is not doing a darn thing. The good thing is per her EKG her heart does not show any signs of thickening, which is great, however, this also adds another layer of complexity to Kennedy's already complicated story.

Her doctor thinks that maybe something is going on hormonally or with her adrenal glands. But was had two ultrasounds of her Kidney's and adrenal glands and everything came back normal - What a surprise!!! I just don't F'n get it! How can Kennedy be so complicated that these highly educated over paid doctors can't find on damn thing wrong with her. I mean hell her cerebellum took two MRI's before she was even diagnosed with having cerebellar hypoplasia.

So the game plan is to wait and see what our next month appointment shows. If her blood pressure is still elevated we will be doing some hormone related tests. Also, her Nephrologist is going to consult with her Neurologist to see if her cerebellum could be causing her unexplained high blood pressure.

Well.....I just wanted to vent. Next month is a big month for us. Kennedy will get her second MRI and have her peg tube changed to a Mickey Button.

Hope everyone had a good weekend - I will post tomorrow and let everyone know how my first day back to work was.


Brindle said...

Im glad to hear that Kennedy is feeling better. thank you (on the congrats-engagement) we havent set a date but we are thinking june, maybe at the river. yeah!! for sure we should get together. you know i am usually always just hanging out at home unless i find something to do, but if you ever need any help with anything or just want to hang out id love to give you a hand and\or let the girls see eachother. ill email you, i think there is a link on your blog, with my phone number :) take care

ps... there are alot of people who dont even know your familly putting out prayers for you guys and your sweet little kennedy:)

Viva Las Vegas said...

Your daugter is so sweet.. I am a friend of Brindle's mom, I follow her blog and took a peek at yours, hope that is OK..