Thursday, January 5, 2012

Post-Appointment Update

Medical Update –  We were a little late getting to the hospital yesterday. We got hung up in Outpatient Registration because only one lady was on duty. THEN, the lab didn’t have orders for us. GRRR! We hustled down to Medical Imaging (Jaydon decided he needed a wheelchair because the catheter was pulling funny). I must have put my phone down on a chair while I was helping Jaydon or when I was calling Urology about the labs. We got called back for the ultrasound and in the little room, I discovered the missing phone. After searching through the bag, I went back to the waiting room and found a sweet little child playing a game. I had to break his heart while I took my phone back. Poor kid!

We have truly seen one of God's miracles this week! The ultrasound looked GREAT! I was amazed at the difference. The radiologist was even astounded at the immense change! Last week, the kidney tissue was compressed into nothingness (almost). Yesterday, there was visible tissue almost throughout the entire kidney! I was almost doing “the happy dance” as demonstrated by Snoopy on the Peanuts cartoons. 

We drove the wheelchair back to the lab and had a struggle there. You’d never guess Jaydon had such strong arms! He fought like a tiger, but in the end (with 3 of us working together) the labs were drawn.

In Urology, we met with our regular doctor; last week we had the Nurse Practicioner (who is wonderful). Dr. Cartwright is one of the best Urologists in the nation! He explained everything to us, talked specifically with Jaydon, and complimented us on how well Jaydon was doing and adjusting to the catheter. The lab results show that the creatnine levels dropped from 2.4 to about 1.3!  This is still quite high, but Dr. Cartwright is hopeful that the levels will continue to drop. Apparently, the issue is with the bladder, not so much with the one remaining kidney. This is a very good thing! We may still be able to delay the inevitable transplant until well into his teenage years and hopefully after most of his growth spurts.

We will be doing a minor surgery on Friday next week. We need to see how bad the bladder is and what its capability is. During the scope, they will be placing a Suprapubic Catheter to facilitate drainage until we can do a more indepth surgery. Jaydon has had one of these catheters in the past, so I’m slightly familiar with them. The tube will be placed through the skin on his stomach directly into the bladder. Like a Foley Catheter, it will be held in place by a balloon. It will also drain into a bag. The up-side is that it is FAR less uncomfortable than a regular catheter and will allow him to be slightly more active. All this will be done under sedation – in other words, he will be asleep. I only wish they would put me out at the same time! I think I might be able to get some rest! When Jaydon comes out of sedation, he will be taken in for another test that tests the amount of pressure within the bladder. We won’t know until next Thursday afternoon what time we’ll need to be there.

The school has made accommodations for Jaydon to be homeschooled. We are having a bit of a learning curve on how to get everything done, but it will come together. Either he or I receive phone calls almost daily to see how everything is going and how he's feeling. 

I’m very grateful for everyone who participated in the fast or prayed for Jaydon! I have truly seen God’s hand in everything we have done this week! The wonderful ward angels provided some much welcome help yesterday and my visiting teachers created an excellent meal. Thank you to everyone for everything! Your support and love truly has been felt across the miles!

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