Stephen's Journey: Today's Update

Friday, July 1, 2011

Today's Update

Today is so reminiscent of the two months we spent in the NICU it's like crazy deja' vu! Being in an ICU setting, back on manual dialysis, and basically just sitting next to his bed feeling totally helpless. Stephen is in a nice room, but it's small, has no bathroom, one chair, and is so cold I'm in jeans, socks, a sweatshirt and downing hot coffee right now. We didn't stay with him last night because not only was he totally wiped out from surgery that I didn't think he would wake up and realize I wasn't there, but since he's on manual dialysis around the clock, the nurse is in here every 45 minutes to drain him and fill him. Plus, he's hypotensive again (his blood pressure is low), so they're in here checking his blood press every hour. It was so nice to actually sleep through the night, but I felt guilty as hell leaving him and then felt terrible this morning when I didn't get back to his room until 11 am. Me racing around the beltway and flying through the parking garage and hustling through the hospital up to his room was also so reminiscent of our NICU stay. I absolutely HATE not being here in the early morning when the doctors do rounds! But his nurse today is so great and waited for me to get there so I could help give him a bath which was so nice.

I was able to just catch the doctor and they're going to run some tests to check out his adrenal and thyroid glands to see if maybe they aren't working properly and causing his low blood pressures. The nurse just came in to draw his blood for the test and was able to use his new Mediport. She drew out about 3 cc's of blood and Stephen didn't even know it. It was so awesome to watch and know that we made the right decision to have the surgery; 110%!

But it looks like we're going to be here in the PICU longer than we thought. Stephen's only getting 50 ml's of dialysis fluid when he dwells and he has to be up to 100 before we can get him back on the cycler. Plus, Dr. Kim doesn't want him having anything to eat, including water, until 48 hours after surgery. Which means he hasn't eaten since 3 am yesterday morning. I don't think he's bothered by not eating, but his poor little throat is so dry and scratchy from the breathing tube yesterday and he's not allowed any water yet. His little cry is so sad! But hopefully he'll take a long nap soon and wake up feeling better and more relaxed.

1 comment:

AnonymousJuly 1, 2011 at 6:48 PM
Dear Lindsey,
So glad you got some rest last night and that Stephen came through the sugery with flying colors. Stephen is so lucky to have Dr. Kim. It is important to have a physician that you trust and has Stephen's well being first. I can only imagine how stressful this is for you. Keep your eyes focused on the future and trust that all will be well....
Love and prayers to all,
Aunt LuAnn
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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!!