Stephen's Journey: Infection Update

Tuesday, August 14, 2012

Infection Update

Thanks to everyone that's been asking about how Stephen isdoing!! He's doing really great, althoughhe does still have the infection. Thankfully it hasn't gotten any worse or spread any further from what wecan tell, but he's still taking all three of the antibiotics and we've now hadto add heparin to his dialysis bags to help break up some of the"junk" coming out his catheter. The preliminary lab results came back last Friday that the bug theyfound in his tunnel was most likely a water-borne bug. Meaning Stephen probably caught this thing atthe pool. Which was a major disappointmentbecause the pool was the one fun, normal thing we could actually do and I hadbeen really diligent about asking the lifeguards at the pool if the chlorinelevels were right and had always showered him off and cleaned his site rightafter we got out of the pool. There wereeven a few times this Summer that we went to the pool but couldn't get in thewater because the chlorine wasn't right. And that says a lot because we only went to the pool a handful of times! And to make things even more confusing, nowthe doctors are saying he shouldn't be in salt water. We had always been told that salt water wasthe best, but now it's not??? It's sofrustrating!!

Regardless, there's no pool until his infection is cleared up for sure andsince we're nearing the end of Summer, thankfully it's not a big dealanyway. But it's just another reason ina very long line of reasons why Stephen needs this transplant ASAP!!! We've got to get rid of this dialysis. He's just bound to get more infections, andevery time, it's a big setback. And theolder he gets, the more normal things need to get for him. He's really so aware right now of everythingthat's going on and hates me having to change his dressings three times a day. Ieven caught him pulling up his shirt the other day to look at his tubes. And thetape is really starting to take a toll on his skin, as are these antibiotics!

We had labs yesterday and have dialysis clinic tomorrowmorning (our monthly 2 hour appointment), so I'm sure they are some changescoming with his calories/feeds/meds. Buthopefully they're all good changes and no bad ones!! Fingers crossed!!

And Bill and I scheduled our appointments today with theteam at the University of Pennsylvania to do our testing for the paired kidneyexchange. We both go up next Thursday(late Wednesday night to be there first thing Thursday morning) for a batteryof tests and then hopefully one of us will match for another person. We still have no other news on the transplantfront, but are still hopeful that something will come up in the next fewmonths.

1 comment:

AnonymousAugust 15, 2012 at 1:40 AM
Hi Lindsey,
Glad to hear that the infection is being held in check and has not become any worse. I am no scientist, but could the infection have been in your city water. Our water here in Lehighton has always been terrific. As a matter of fact, they actually had to "dirty it up" to check and see if our new filtration system was working. However, this summer, the water has been terrible. It has an odd smell and some funky stuff grows in our toilets almost every two days. Our water authority has said it is from the extremely hot weather and it should clear up as soon as it turns cooler. I don't trust it and have been using bottled water. Three of my friends have had UTI's and people in the neighborhood have complained of "24-hour bugs". It may be worth having your home water tested. Who knows what is growing in the resevoirs and water lines....Fingers are crossed for your clinic visit tomorrow.
Love and hugs,
Aunt LuAnn
ReplyDelete
Replies

Add comment

Our Crazy Kidney Life

As many of you already know, our son Stephen, was born with a very rare kidney disease called Autosomal Recessive Polycystic Kidney Disease (ARPKD). When the disease was discovered during my 27th week of pregnancy, Stephen was given a less than 1% chance of living more than a few hours past birth. He was to have such severely underdeveloped lungs that the doctors said he would likely not even take one breath. However, on January 4, 2011, we were granted our 1st miracle - and Stephen came into this world crying (and breathing!) and fighting for his life with fierce determination. At 6 days old he had BOTH of his kidneys removed and began peritoneal dialysis. Stephen came home from the hospital when he was 59 days old requiring 12 hours of dialysis every night as well as enteral (feeding tube) feeds during the day and overnight.

On May 9, 2013, we were granted our 2nd miracle, in the form of a new kidney from an extremely generous friend. Stephen received a kidney from a non-related living donor at the Children's Hospital of Philadelphia. He spent 13 days in the hospital recovering from his big surgery and ever since has been living life the fullest! His life is still a delicate balance of medications and weekly lab work, but he's an extremely vibrant, loving, active 2.5 year old.

This blog is Stephen's journey told through my eyes (his mother's), thoughts, and emotions, with extreme highs and lows. But there's no way we would be where we are today without all of the support, thoughts and prayers from our family, friends, and readers! Thank you!!