For starters... we arrived at 12:30, PLENTY early, (or so we thought) for a 2:00 appointment. Even better--we successfully navigated a different route in downtown KC lunch traffic, without so much as a bicker! (Please tell me we aren't the only married couple that competes in Snip-Fests when directions and navigation are involved?) Either which way... we fist bumped and pumped, and headed in to the hospital to enjoy a leisurely lunch in their cafeteria. Kenton said the sweetest prayer before we ate, then we stalled as long as possible...and headed up about 1:40.
So back to the (or so we thought). I go check in and the receptionist told me our appointment was ACTUALLY at 1:00, and since we were more than 30 minutes late, it was cancelled. My jaw dropped and heart sunk... and I muttered... "We came from Wichita." She said, well I'll talk to a nurse and see if we can make an exception. And I muttered again..."We've been killing time since 12:30 in the cafeteria....and were told 2:00." I still wasn't getting a look of sympathy, BUT she talked to the nurse and they agreed to see us... so we were luckily able to avoid any "Mom Goes Psycho in Pediatric Pulmonary Clinic" headlines. Whew! We had to wait for the "true" 2:00 appointment to arrive and be seen, before they would squeeze us in. So we waited... what's new?
Finally our turn arrived... they did all the normal stat stuff...and took us back to a room. Where again...we WAITED. It was at least 45 minutes, and definitely the worst 45 minutes of this whole ordeal for me. I only can relate it to the waiting for the doctor to find the heartbeat of my subsequent babies after my previous miscarriages... except honestly... worse. I'm quite certain I was pale, and not sure I could have stood or walked at that point. I was disappointed in myself for not remaining more calm... and full of faith and belief..... I let major fear creep in. My husband, of course, remained calm... we make a good team, I tell ya. He is strong, I am weak. ;) Some time during that wait, a respiratory therapist snagged Kenton to do a repeat lung function test... then delivered him back.... and FINALLY we heard a sweet little knock on the door.
Sweet enough that I even analyzed that... (sweet, delicate knock = doctor is nervous, trying to ease in?--pathetic, I know). The doctor sits down, and starts to small talk more or less. How's Kenton been since we've seen him? He's gained a little weight, etc. Then I screamed... "Ummmm, HELLO????? Do you know???" Ok, we all know that didn't happen. Finally, she said, that she had not gotten the results of the genetic sequencing back, and had no idea when she would. Although I could feel the color came back in my face---and I was relieved that no bad news was headed our way today... I was so very disappointed for the waiting to continue. She reminded us again what a tedious process it is, and asked for the "P" word again.
The "P" word she was referring to, was obviously "Patience". I had a different "P" word--phrase really, going through mine... and that was "Poker Face". She has a GOOD one. She gives not one indication to lead us to believe one way or the other. She just states the facts. Which I suppose is a good trait in a doctor... but I kind of wanted to say, now talk to me "mom to mom!" How do you think this ends? Grr.
We did get information on the specific mutation that he does for sure have... and got some encouraging news on his repeated lung function test. It had DRASTICALLY improved. Moved from a "fail" score to normal range...which means the medication he is currently on, is working. It doesn't however, mean less (or more) chance for CF.... as some CF patients use the same medications... it just means that it's working. YAY!!! :) Answered prayers!
So now we are waiting on 3 things:
1. Genetic Sequence results (we want there to be NO ADDITIONAL MUTATIONS found)
2. Lung X-Rays (we want them to look perfect with no signs of damage)
3. Pancreatic Testing Results (not sure what we want-- so we'll just say we want a good report)
IF all three of those things come back as I typed... I believe Cystic Fibrosis will be taken off the table---and the Whites are inviting you all for a big ol' party! ;) If one or more is questionable, we continue. She did say if CF is ruled out, there are some other pulmonary conditions we may need to rule out as well... but for now we are starting there and working backwards.
So that's the scoop on the appointment! Kenton is such a trooper... I think he'd go through about any amounts of poking and prodding if he knows he gets to see his cousins Abe, Aidan, and Avery afterwards--lucky for us, they live in KC! We enjoyed a nice dinner with them before heading home. He also beamed the whole drive there, because his cousin Dillon packed him a special travel bag with his favorite toys and snacks! Can I just TELL you how amazing our families are?
I never remember a time where I have felt so much love and support....and we consider ourselves so blessed. This sweet picture was circulating all over Facebook...along with links to this blog, and it truly warmed my heart to know so many people were rooting for my little man and care about our family.
Warmed my heart doesn't do it justice. It's just so very touching to know that there were people thinking of us and praying for us all day long. Every text, Facebook share, comment, or like.... was so very, very appreciated. Strangers praying. Lifelong friends and brand new friends... united in prayer. There really are no words to describe how incredible it was--- so I guess I'll just leave it as one huge, and oh-so-sincere....THANK YOU!
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