On Friday, Steven was watching a funny movie on his portable DVD player – only comedies for that kid, to bring him some fun and laughter and make him feel good inside. He wasn’t ready to come off the vent at that point, but the doctor said they didn’t need to rush him. Physical therapy came by and worked with him for a little bit, and Steven started working out with 2 lb hand weights that his mom bought him Thursday; such progress from the Code Blue 5 days beforehand.
Despite the news of Steve’s job loss after FMLA expiration, the focus continued to be on Steven and his progress … the most important thing in the eyes of his parents. For those of you who wanted to see the newspaper article published in the Bristow newspaper about Steve’s job loss, I have it for you here:
On Saturday, Steven started the day strong, breathing on his own for over an hour. When they tested his blood gas, it was all normal. He got dialysis and Day 2 of his NG feedings went well. Later in the day, they were able to take Steven is off the vent and he was talking to his parents. When they pulled the tape back from his upper lip to remove his breathing tube, is mom said he had a mustache growing, so apparently the chemo effects are wearing off. Such a man!
If you haven’t seen it, his mom shot the most WONDERFUL video of Steven on May 1, May Day. From Code Blue to “I Love You” … I definitely cried tears of joy when hearing him speak after such a frightening weekend. Here is a link to the video if you’d like to see our brave boy (again, if not on Facebook, you can access his Team Steven page from the Facebook link on our sidebar here; go to the Videos tab to see it there – first one right now):
Steven was doing great again on Sunday. His doctor said the next step would be to wean him off the NG feedings & TPN and get him back on table food. His chest & neck were still sore from the tunneled catheter procedure a few days beforehand, and he was napping comfortably. It was good that he was resting to build his strength for more physical therapy on Monday.
I talked to Steven’s stepdad, my brother Jeff, on Sunday night. I haven’t heard him sound that relaxed in months, and it was such a relief. He believes Steven is exactly where he needs to be and is confident in the doctors working with him. He said that Denise moving him to his side on Sunday morning and having him code were the catalysts in getting him to the right place to survive and recover. I am a firm believer that there are no coincidences in life, and that the right people are put into our paths when needed … it was time for a move to the adult hospital. Steven is surrounded by so much love on this journey, and things keep falling into place at the right time. Miracles continue to abound.
It was comforting to hear Jeff say the cancer truly isn’t a concern at this point, and they really just need to get rid of these infections. I think it’s fantastic that Steven keeps a pair of shoes by his bed so he can see them and focus on the day he can walk out of that hospital! He is such an amazing, inspiring young man. My heart is constantly full when I think of him, which is pretty much all the time, so it’s nice to have such a happy heart. 🙂
On Monday, the cultures from his tummy fluid still reflected the Candida, but there was good news that the bacteria infection is gone, so he will be able to stop some of the antibiotics. The GI doctor thought about having Steven swallow a ‘camera pill’ to diagnose a problem in his intestines, but planned to wait a couple of days before that, since his stomach is just starting to move things through a little better.
Steven’s lungs are still pretty weak, but he had some really good coughs yesterday. He was blowing bubbles through a bubble wand to increase the depths of his breath (thanks to their smart nurse for that great idea). Denise said she thought she was at a Lawrence Welk show. LOL. Please continue thoughts and prayers for lung strengthening and for his infection to go away.
This morning Steven had some breathing issues from 3:30 to 5:30 a.m., and his heart rate was really high with his BPM around 40-50. The doctor said he didn’t feel Steven needed back on the vent and kept him on the bipap. They also took an X-ray of his lungs, which showed his lungs looked pretty good. They ordered more cultures since the infection and the 103 fever he was running would be another reason his breathing and heart rate could be so labored. He’s now off the bipap, his oxygen is at 100% and his breathing has slowed down a lot, so he seems to be doing much better.
UPCOMING SURGERY – KEEP THE GOOD MOJO COMING!
We now need lots of good vibes, healthy thoughts and focused prayerful energy for a successful surgery for Steven. A surgeon is coming by today to assess and discuss possibilities for exploratory surgery to find out what’s causing Steven’s infection. In doing this, they would be able to fix any problems while in there rather than utilizing the ‘camera pill’ (where they would have to wait a few days for results and it might not be 100% conclusive). His tummy fluid contains the candida, which they have pinpointed is coming from the intestines. Therefore, the only way to tackle this head-on is to do exploratory surgery.
His mom said we have a few strikes against us right out of the gate: He has multiple system issues, kidney, liver, weak lungs and infection along with peritonitis. But the doctor also said the biggest thing in Steven’s favor is his youth. Being only 18 years old, he has proven time and time again that the young recover much better than the rest of us (we’re not old – deny, deny, deny!). I told her if we’re talking about strikes, sometimes you have to hit a few strikes before getting that home run! So batter up! Let’s figure out what’s up and knock this infection outta the park! Go Team Steven!
Our brave warrior has come SO FAR!!!! Please send lots of love his way for continued miracles, further healing and successful surgery. Thank you for all of the warm thoughts, good energy and healing prayers you send to our sweet Steven. HUGS!!!