Monday, August 23, 2010

August 12 - Dialysis

Hi everyone - I can't believe it's been 10 days since Porter's arrival. It feels like 10 years.

James wrote an update to send out to our church group earlier today updating everyone on Porter's surgery last night. It was a late night as the pediatric surgeon was called away for an emergency surgery at another hospital, but since we were not an emergency case, we were happy to get bumped so he could help another more critical child. We all finally turned in around 2 am and she was resting peacefully under the watchful eye of her daddy and nurses.

As she came out of sedation this morning we started the dialysis. As James writes below, this is not a permanent situation. Our biggest prayer is that the dialysis gives her kidneys an opportunity to rest and heal - and that it's in the Lord's hands whether or not we leave the hospital with the catheter still in place and learn how to do the dialysis at home ourselves. But that's weeks away and I can't get myself too excited about any possibilities. The roller coaster of having a critically ill child makes you try not to wish for things that are too far down the road that may or may not occur, but we are faithfully praying for the desire of our hearts and that's the best we can do.

I got to feed her a bottle today - it was actually a big surprise. She was doing so well this afternoon that the neonatologist said we could give it a try with me feeding her while she laid in bed so the catheter was not moved while the incision is still healing. It was amazing. You take all these little things for granted in a healthy child. I am so thankful for the little things today.

The team has been great, and although we hated to leave Presby and their team, today has confirmed it was the right decision. She is improving little by little.

She still needs your prayers. The risk of infection or leaking with a catheter in an infant is very high. She is having another EEG tomorrow to measure brain activity and will hopefully show more signs of improvement.

Our faith, family and friends continue to sustain us. And we will never know how to thank everyone.

Much love, Sarah


From: James Lary <>
Sent: Thu, August 12, 2010 9:14:24 AM
Subject: [TNS@FBD] Porter Kate Lary - Update Thursday AM


Sorry to have fallen off the face of the earth the past couple of days.
Unfortunately, life with a 9 day old in the NICU is not uneventful. This will
be a long one.

As Sarah reported in her email last night, we were transferred to Medical City
Children's Hospital for evaluation for dialysis. Presby does not have a
peditric nephrologist (kidney doctor) on staff. This option was presented to us
about noon on Tuesday. We decided that if the creatinine level did not have a
pretty dramatic decrease overnight then we would move on Wednesday. In addition
to not wanting to move Porter, our experience at the Presby NICU was so
unbelieveable and we felt so loved, we did not want to leave and start all over
with new protocols, doctors and nurses. The creatinine level actually went up,
so our decision to transfer was easy.

Before we left yesterday, Luke did get to meet Porter for the first time. He
was very into her early on and then became more interested with the light dimmer
in the room that he could reach. He sang "Twinkle Twinkle" to her.

Thankfully, we were not yet in an emergency situation so Porter's move, albeit
stressful, was uneventful and without people running and sirens. Sarah and I
had a bumpy start once we got here, as my father tells me can be common with
transfers, but Porter's care never declined and the staff here immediately
solved the problem.

So, once we met with the nephrologist, we decided that the dialysis was the best
option. For your googlers out there, we are doing "peritoneal dialysis". But be
careful what you read on the internet because every kid and case is different
and some of it can depress you.

You probably have the same questions we did so, first, just because we are
starting dialysis doesn't mean that her kidneys will not eventually catch up,
and if that happens we can stop and have the catheter removed. This is our number
one prayer.

This is not going to help or impeede her kidney's recovery. This is not a kickstart to the
kidneys, dialysis is doing the work of the kidneys and cleans out the bad stuff
in your body. Also, we can go home on dialysis and Sarah and I can be trained
to do this at home.

The surgery was a success. She was out of her room for less than one hour. I
am so grateful that her improvements have made her stable and easily moved. It
is a blessing to be in a facility where in the same day speak with a
neonatologist, pediatric nephrologist, pediatric surgen, and a pediatric
anestheiologist, in addition to a whole host of qualified nurses. Also, the
nurses converted a room with a couch into a bed so that I could spend the night
at the hospital.

Other than that, she is eating like crazy, has all good signs otherwise. We saw
a pediatric neurologist again and he as optimistic with her progress. They were
even going to try bottle feeding if we didn't move yesterday, so that will be
pushed back. Now that I know where a computer is in this hospital I will be
better about sending updates. It is therapudic for me so, thank you for reading
my ramblings.

The Prayers:
1. Pray that Porter's kidneys kick into full gear so that the dialysis is

2. Pray that the dialysis does its job and flushes out all the bad stuff in
Porter's body.

3. Pray that the seizures we saw last Friday were an isolated incident and do
not return.

4. Pray that Porter has the strength and determination only God can give to keep


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