Stephen's Journey: Back To The ER

Tuesday, March 29, 2011

Back To The ER

Well I guess I was a bit overconfident about my g-tube skills because we had to head back to the ER tonight to check out his tube. This afternoon when I went to give him his meds, there was all sorts of dried blood around his button; something that has never happened before. I was pretty concerned not only because of the blood, but because I had just replaced the g-tube myself on Saturday. So I attempted to contact the GI doctors that saw Stephen in the NICU, but didn't have any luck since it was already 4:15 pm. Then I called the pediatrician who suggested I clean the incision site and then watch it over the next day or two to see if looked infected. If it started to look infected or bleed again, they told me to take him to the ER. Yippee.

I cleaned the whole site like I do each day (and what I did this morning after his bath) and it looked really normal. So I figured no big deal after all. Well three hours later I checked it again and what did I find? More blood. So off to the ER we went.

Two ER doctors (one of which had no idea how to hook up the connector piece to the g-tube button), three nurses, two x-rays, and four explanations later about Stephen (no he really doesn't have any kidneys), we were sent home. Although not without a quick visit to see some of our friends in the NICU! And....we'll be back at the hospital tomorrow (again) for routine labs. We just can't stay away from our home away home I guess.

2 comments:

AnonymousMarch 29, 2011 at 7:38 PM
Dear Lindsey,
Sorry to hear the your little man haa been giving you some worries. You and Bill seem to handle these things like pros. I can only imagine all the training the two of you had to have before bringing Stephen home. You are doing a fantastic job and I am sure every day will become easier. You are all in our constant thoughts and prayers.
Love,
Aunt LuAnn & Uncle Dick
ReplyDelete
Replies
{darlene} @ fieldstonehillMarch 29, 2011 at 9:08 PM
So sorry you had to head back to your home-away-from-home. I imagine how tiring all of this must be... mixed with the joy and struggles of being new parents!
Stephen is a trooper beyond all troopers.

Ever praying, Bill and Lindsey and Stephen!
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!!