Stephen's Journey: No Good News Today

Wednesday, April 27, 2011

No Good News Today

Sorry nothing good and or fun to report...again. Stephen's been off his game since Sunday and it all came to a head last night and today. Last week I think I mentioned that he started getting a rash on his abdomen up near his g-tube site. Over the weekend it continued to get worse and Sunday morning it was a definite full-blown rash. He did great through church, but then pretty much cried the rest of the day and started refusing to eat his whole bottle. Then Sunday night, I noticed there was fluid leaking from his g-site.

I took him in to see the docs Monday and got some topical and oral prescriptions for the rash which appeared to be a yeast infection. Not good. If it gets into his catheter, we'd be in BIG trouble and admitted to the hospital, so i needed to nip that in the butt fast. They also replaced his g-tube and have ordered a new one that will hopefully be a bit more kind to his little belly and his skin.

Yesterday I took him to the hospital for labs, which was a gigantic FAIL! They spent an hour sticking him with needles and barely got any blood. At one point, I had to just say enough is enough and we left. And I basically had a mental breakdown. Watching your baby get poked and jabbed over and over again just sent me over the edge.

Then last night, similar to the few previous nights, Stephen didn't sleep at all. He slept from about 10:30 pm until 1:30 am, but then was up every 30-40 minutes screaming. Not crying but screaming. I couldn't even console him by nursing him. And then today while we were at our nephrology appointment, he cried and wined and whimpered the whole time. Even in the car. And his rash is getting worse and so is his g-tube site. We got some stronger anti-fungal medicine which should hopefully help in the next 48 hours.

And the tell-tale sign that I know he's really sick....he's taking a nap in his crib as we speak. I think in the almost two months since he's been home, he's napped in his crib maybe three times. This week has definitely been pretty rock-bottom for us. I just hope that things will start improving soon and he'll start sleeping because Bill and I are definitely running on empty.

No comments:

Post a 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!!