Chris called the cardiologist today to get the results of Ben’s testing. The reason for this testing was to answer the question: Why is Ben’s blood pressure (B/P) so high after his last surgery? We still have more questions than answers but this is what we learned . . .
The flow to the kidneys is high (it is suppose to be around 70 and Ben’s is around 400). The doctor said that this may be caused by any number of issues including obstruction in the descending aorta. Usually in these circumstances, the patient would go back to the clinic for an ultrasound of the aorta, Dr. Altman is “tired of all these tests” and chosen to be more aggressive and find out what is going on with Ben’s B/P. She has scheduled a cardiac MRI on Sept. 9 at Texas Children’s Hospital which will take a picture of his entire cardiovascular system. This will help eliminate or answer the questions for the doctor if Ben’s B/P is a “plumbing problem” or if it is something else.
All of this is very distracting and hard on us as parents right now. 6 years ago we never thought we would live a life where we go day to day wondering about the safety of our child because of some cardiac issue. Days like today don’t help.
We do not know . .
* what happens if there is an obstruction although our best guess is that we will fix it.
* what happens if there are no obstructions
* why Ben has any of these problems to begin with (don’t ask cause we don’t know either)
Ben and the rest of our children DO NOT know about any of this. Our plan is to inform Ben prior to the MRI but he will be sedated for this which means a possible IV and Ben has strong feelings about needles. So hear us out on this one. Don’t ask Chris or I about this at church. Call us on the phone if you want to know more but public conversation is not helpful at this point. We ask for your continued prayers for Ben. He is such an awesome boy who cleans his room sometimes, plays with transformers like a wild genesis, and makes his sisters mad but does not deserve any of this, but must go through it.
Katherine and Chris Lake
The Puddles 
Kath, I count on you to give us the “scoop”… PC is often too emotional to tell what is going on. I am so sorry that Ben has to go through all of this. It is hard on an adult (Dave) so I can’t even imagine what it is like with a little one. Know that when God hears our prayers He will do his best for little Ben and the rest of your wonderful family. Treasure him as I know you do and keep your head up…one foot in front of the other. Peace and love…
Katherine YOU GO GIRL!! As parents of a child with a chronic illness we choose not to share Kevin’s CF with most people. We did not want him labeled as “the kid with CF” his good health made this easy, varsity letter in cross country, no real health problems- For this I am so grateful to God. He gave us Kevin for all the years parents get-we saw him fall in love, grad HS and College and marry the love of his life and have four years with her.
I can imagine being in the position that you and Chris are. It is very difficult-people can be so thoughtless. And I love your please don’t ask us why because we do not know–how many times my sweet mother-in-law tried to assign the genetic disease to whose family-what does it matter -it is what it is. When Kevin was diagnosed I was actually asked several times-does that mean he is going to die-after the shock sunk in my response became-we are all going to die-didn’t you know that-I was feisty even at 23!!!
Praying that there aren’t too many thoughtless stupid people around you!!!!