Surgery, clinic, hike - whew busy update!

[Phyllis Ann Talbot]

First - surgery

Well they've gotten Hyde's nephrectomy tentatively scheduled for March 1st. Waiting on the surgeon's scheduler to call back to just confirm that everything is all lined up with the hospital. We will most likely be going in on Feb. 28th in order to be there are ready to go. Not sure of the time yet - will update later. We still haven't decided 100% how we will do the surgery - right now our urologist/surgeon would like to try the surgery laproscopically but with time scheduled in case there are any problems or anything makes him uncomfortable - he can change to an open procedure mid-stream and hopefully 'repair' if there is any damage. Finger, toes, legs, arms, etc. all crossed and prayers up that no 'repair's are necessary. The biggest problem is due to all of Hyde's extensive history - we've used up most if not all of his access points (veins) that could be used for hemodialysis if there were any problems during the surgery. We will be scheduled for an ultrasound prior to surgery so they can get a better idea of what options if any Hyde would have at this point if there was a problem with his peritoneum. The surgery will take between 4 and 5 1/2 hours and we will probably be at Egleston between 3 and 7 days depending (knowing us - i'd say closer to 7+ and then I'll be happily surprised if it's sooner. We can use all the thoughts, prayers, and good wishes that everything goes smoothly with this entire procedure and it accomplishes what we hope for Hyde's blood pressure. Remember all of us over the next 3 weeks as we try to keep on an even keel with this looming!!

Second - clinic

We had clinic today - everything seems pretty stable - for #'s folks - BUN is 69, Creatinine 10.2, Potassium 4.8, Phosphorus 8.3 (this stays high), Albumin 3.4, HGB 12.1, HCT 34.8, and platelets 202. Mostly we discussed Hyde's surgery and pros and ****. Our dr's will be touching base with Dr. Smith (the urologist) to make sure he's aware of our limited options for hemo.

Third - HIKE!!! ;-)

OK - here's the fun fun fun part of the update - we are in the process of getting everything together for the 2nd Annual hike for Hyde!! This year we are teaming up with 2 other families in the area whose little guys are suffering from AHUS. Bryan Hearn lives in Lawrenceville and Kegley Hubbard (who came last year with his family) lives in Macon. Split of proceeds is the same as last year - 80% to the Foundation for Children with Atypical HUS and 20% to CHOA (Children's Healthcare of Atlanta). It should be even bigger and better than last year so we hope everyone can make it out!!! Details as well as on-line registration or directions for mail-in registration are available at www.hike4hyde.com . Forward this out to everyone you know - the more the merrier! You can also send out the link to the video that was done for the hike that has the amazing pics by Emily Saunders of Hyde as well as of the hike last year. Spread the word - we'd LOVE to top last year's total of over $20,000 raised for these 2 great organizations!

If anyone is interested in volunteering - e-mail me separately or contact Joda Foster at [e-mail] who will be our volunteer coordinator this year and will be keeping the master volunteer schedule.

Thanks again - and sorry for the book!

Bill, Phyllis, Ruth, and Hyde

[lisa ann peterson]

we will be thinking of you guys... our prayers are with you guys...

[Linda Burke]

You're amazing...our prayers and best wishes go out to y'all !

[Svetlana Finley]

We will be praying for him and for doctors to make right decisions and surgery. That is awesome that other can make to the HIke!!

[Heather Still]

Glad to see the surgery is scheduled......Stinks that he needs it, but atleast the decision has been made and you're moving forward. That's got to be a relief. We will be thinking of you and looking for updates. The video of Hyde is amazing. I cried my fool head off. I posted it on my Facebook page too. Good luck on the hike!! I'm sure it will be another huge success.

[Cheryl Biermann]

Happy to hear the ultra-sound is scheduled and will give you some peace of mind. We will definitely be praying for Hyde, I'm going to print his pic, and put it on the table so we see him at every meal. Sounds like the hike is going to be so much fun with the three families there! Don't work too hard.