The Peanut Gallery

Tuesday, July 14, 2009


Tuesday, July 14, 2009
Yesterday Kennedy had her 1st of several appointments scheduled for the month of July!  We went to see her Nephrologist Dr. Cutler (who by the way we love, well.....we or I, love all of Kennedy's doctors - lucky us).

We missed most of Kennedy's appointments while she was admitted to the PICU for pneumonia.  So it has been a nightmare rescheduling all 7 of her specialists!  Her blood pressure has always been a topic of concern for me.  I am always so unsure about giving Kennedy her medications because we do not monitor her pressures at home and there are really no visible signs to say that her pressures are too high.  Every day I just give Kennedy her Captopril and Norvasc as scheduled and hope for the best - Geeze!  So, needless to say I was anticipating a blood pressure reading and to my surprise it was NORMAL!!!  Yippie - 111/66.  That is the best reading we have ever received in all 5 visits to Dr. Cutlers office.  

He feels that Kennedy's Hypertension is a result of her immobility!  Since she is unable to move at all and has severe hypotonia (weak or low muscle tone) that the muscles constricting her blood vessels are probably weak, thus, resulting in higher pressures.  There are no other medical reasons as to why she is hypertensive.  All of her Kidney tests have come back normal and her heart is in excellent condition according to her two echos.  

Dr. Cutler's theory is, "if nothings broke don't fix it".  Thus, the reason he is leaving Kennedy on the Captorpil and Norvasc at the same doses.  Kennedy is actually weaning herself off these two medications.  She has doubled in weight since she was discharged from the NICU and her doses have never changed.  So as long as the doses don't increase, Kennedy continues to gain weight, and her pressures remain in the normal range, she should outgrow these  two medications in six months!!!!!!  

For our first of many visits in July - it was a great one!  I am really able to relate to Dr. Cutler.  He had a daughter kind of like Kennedy.  She was not supposed to live past one and made it to eighteen.  He commended me on how well I handle Kennedy and proceeded to tell me that I was very wise beyond my years.  In addition, he wished more of his patients had parents like me - wow what a complement!!!  One word of advice he gave me which I feel like I have really lived my life by since Kennedy's birth, "take each day as a gift, enjoy life, laugh often, and live each day to its fullest because you never know when your time will be up" His words meant more to me then I think he will ever know.  

Thank you Dr. Cutler - Thank you!!!


mandy said...

Oh Steph that is so sweet, I wanted to cry. What a blessing to have a Dr. you who not only knows what road you are traveling but has actually walked in those shoes! When Trace was diagnosed in utero with a cleft, someone recommended a pediatrician to me who also had a cleft...his words of wisdom meant so much to me!