Whew - hectic few weeks

[Phyllis Ann Talbot]

Hi there everyone - I had to look back to see what was the last I'd written because it's been so crazy the last few weeks. Where do I start? Well - I guess I'll start with the not too fun stuff first - Hyde had a double whammy hit him last week - I swear - poor thing has to be one of the unluckiest kids on the planet - he started running a pretty high fever last Monday night (and some of you may remember we are a little nervous around here when it comes to Hyde and fevers) and by Tuesday morning he was pretty miserable (well really all Monday night too :-(..... and his drain bag fluid was VERY cloudy - which isn't good. Long story short after a long day of sending in stuff for cultures and sitting at the pediatrician's office - Hyde had his very first case of peritonitis (an infection of his peritoneum - which is how we do his dialysis) as well as a case of strep. We started him on oral antibiotics as well as 2 kinds of IV antibiotics in his dialysis fluid as well as a topical antibiotic on his exit site and so far - he seems to be doing well. We had a long couple of days - especially since the infection seemed to cause problems with how his PD was working - so we had a few heartstopping moments waiting for his machine to work and late night pages of our PD nurse. We still aren't back to 100% yet - but his PD #'s have been improving each night - so fingers and toes crossed and prayers up that the decline is just temporary from the infection and no permanent damage was done to his peritoneum. If nothing else this just made us start pushing even harder to get answers on the approval of the Eculizimab as well as getting everything else in place for his eventual transplant.

WE had clinic today and surprisingly his #'s were pretty good - BUN - 42, Creatinine 6.2, K - 3.4, phosphorus 5.1, HGB 10.3, HCT 29.4, and platelets 422. Kind of crazy considering the infection and the very small amt his PD has been pulling off.

Towards the 'fun' side I guess - the trip to MD was a great success and we celebrated Bill's parent's 50th in style (despite some hiccups from Grandpa that ended up fine - just needed to keep us all oon our toes!)

Hyde has started preschool (6 days in and had strep :-() and as we thought - all prayers are needed for his teachers - Ms. Leigh and Ms. Kerri - we are now 6 class days in and he's had to get pulled screaming from the car each day - the little bugger went to extremes last week to avoid school with the peritonitis and strep - he goes back Wed. and my money's on May 2011 as the date he stops having to get drug from the car for school. He's arguing with the director and teachers on why he needs to go home - he's not used to being away from his mommy and they need to call his mommy RIGHT NOW. He's usually smiling when I pick him up - we'll see how it goes.

Other than those couple of things (HA) we are doing well - Ruth still LOVES school and we are hoping this will rub off on her brother - and she is VERY excited about her 6th birthday coming up on Oct. 6th.

We are hoping to have a meeting set up very soon with all the folks at the hospital so we can nail down all of our questions and know exactly what steps are next in the process - we'll let you know as we have more info - please continue to remember Hyde and the whole family in your prayers.

Thanks as always - Bill, Phyllis, Ruth, and Hyde

[Wendy Flinn]

I am so glad he's doing better. I am guessing you probably need a couple naps while the kids are at school. School is one big germ pot. I hope he gets over his separation anxiety soon. I like his reasoning with the teachers. He knows what he wants. Too cute!

[Cheryl Biermann]

Poor baby! Nathan had a very rough start in KG too, seems it was the time they thought he was dry and really we were loading him with fluids to get his creatnine down, and really he was in kidney failure and wound up with pnuemonia as a result of all the extra fluids! Any way, on the second day of school at gym class, the teacher wanted him to dance with a second grade girl and he had an attitude about it, so the teacher took him to the office and told him he was in big trouble! He vomitted and continued to vomit every gym class, until about 6 days later when he was admitted and we discovered his renal failure!

Is six a jinx number? Good luck, at least there are no "mean" gym teachers in Hyde's life! We eventually got over this hump and so will Hyde-it just goes to show you what a great mommy you are!

[Grace]

I hope Hyde is feeling 100% very soon, and no more nasty infections! Hopefully the one-more-BIG-change of school will turn out to be a positive experience soon. Wishing Ruth a very happy birthday and all of you many blessings.

[Amy Swarbrick]

Poor Hyde, one set back of putting these kiddos in school is that they are exposed to things like strep throat:( Not to mention he had an infection also..... :( :(
Getting excited for you guys about the upcomming planning and preparations for a transplant. I know it's a little bit in the future but it will be a blessing I'm sure.

[Linda Burke]

My heavens....it's certainly been quite the start to Hyde's school year, love his explanations to his teachers! lol Here's to a much quieter week filled with answers and hope!