Backtracking through our week from Monday … Steven finally had a restful night of sleep with Ambien on Sunday night and no fevers Monday. He continued with dialysis and received blood. They planned to do another culture of his stomach fluids to check the status of the abdominal infection. His stomach didn’t appear to be filling up with fluids like it has been, so we were hoping the medicine and all the good vibes being sent were working. The plan was to keep treating him for infection, and once it’s clear place a tunneled catheter for dialysis and then restart chemo.
Denise went home Monday night around 8 p.m. to spend some time with Jeff and her 7 yr old twins, and she was awakened by a phone call at 6 a.m. Steven’s dad, Steve, called to say Steven had breathing issues around 5 a.m. He could barely get any breath. They took a chest X-ray and checked him with a stethoscope. The nurse couldn’t hear any air going into the left lung. They put him on a ventilator, which helped tremendously, although he felt nauseous.
The X-ray showed the lungs were pushed up from fluid in his abdomen, which was odd since his tummy didn’t look that bloated. The Ambien stopped working Tuesday night, and Steven’s nights of restless sleep returned. As a result, this means his parents aren’t sleeping well, either. He continued to get dialysis and they planned to have his tummy drained of the fluid to do a culture to check progress with the infection. A CT was scheduled to see what’s causing the fluid buildup and check the lungs.
Wednesday was fairly calm, with Steven wearing his bipap mask for comfort. His mom said he didn’t really need it, but he felt better wearing it. They didn’t tap the fluid off his tummy Tuesday since they pulled off quite a bit of fluid during dialysis. He was doing better at coughing, which in turn helped his breathing. They kept encouraging him to cough and moved him around as much as possible to make him have that urge to cough. Denise said birthday cards started pouring in by Wednesday! Thanks to everyone who has been sending cards for his 18th birthday on Monday! She reads them to him, so hears each and every message. You guys are awesome!
Steven’s CT scan Thursday morning finally helped figure out completely what’s going on with his lungs. It showed that the bottom of his left lung may be partially collapsed or might have an infection. They couldn’t tell the difference because there is quite a bit of fluid around his lungs that they planned to drain off and culture after dialysis. His body is wasting muscle faster than they can give him nutrients. His metabolism is in overdrive, and his mom was wondering if they could slow it down somehow.
MAJOR DISCOVERY REGARDING LUNGS – THOUGHTS & PRAYERS NEEDED!
The CT scan results showed that his body has wasted the muscle around his lungs to a very thin state. The doctor was researching a drug that she may start him on Friday to see if it helps stop the process of the muscle wasting. This is an extremely serious issue, as the muscles around his lungs are just too weak to support his breathing. The CT showed some irritation around his intestine, which may be causing some of his problems, and it could be a result of the Candida infection in his body. The problems with his liver look as though they may be related to his Caroli’s Syndrome and not from the infection or the lymphoma. (I had to look that one up, as I wasn’t aware: Caroli’s syndrome is a rare congenital disorder that involves intrahepatic bile duct ectasia and congenital hepatic fibrosis, frequently seen with concomitant autosomal recessive polycystic kidney disease – ARPKD. Geez.)
So that’s the news for now. In the words of Steven’s mom: “We truly need a miracle. Plain and simple. We’ve got to beat this infection and stop Steven’s muscle wasting. Please pray!”
STEVEN’S 18TH BIRTHDAY MONDAY
Again, a reminder that Steven’s 18th Birthday is Monday, April 12. We would love it if you could send a birthday card to him to cheer him. He’s been such a fighter through all of this. He wasn’t even supposed to even see his 18th birthday a month ago, and the support and love of so many people has helped Steven to keep being a warrior and bolstered his family during a difficult time. Please keep up the love! Send cards to:
c/o Denise Sargent
10111 S. Sandusky Ave.
Tulsa, OK 74137
Thanks to you all for your love, support, thoughts, prayers, good wishes and healing intentions. KEEP THEM ALL HEADED TO HIM NOW!!!! Thank you!
For those of you who are unaware of Steven’s history of his kidney transplant when he was a little boy, his Aunt Dena found the newspaper article featuring the beginning of his health issues that eventually led to where he is today. Look at that remarkable little boy … a fighter then … a fighter now. He’s quite remarkable, that special guy. Sending love, strength and healing wishes for muscle regeneration and lessening of infection to you, sweet young man. Sleep well tonight. xo