Today Steven really needs ALL of the thoughts, prayers and good energy you can muster! THINGS ARE VERY SERIOUS. Please direct it all toward his liver! With all of the infection he has been battling, sepsis has set in and his liver is fighting to survive. Steven is fighting to survive. PLEASE send lots of love his way. The amazing power of healing energy and prayer has surprised us all on more than one occasion, and Steven once again needs your love RIGHT NOW!
Yesterday Steven got another CT scan because his white blood cell & calcium levels keep rising, yet his albumin and hemoglobin keep dropping, so they knew something wasn’t right. The doctors have been working really hard to find the missing link. They wanted to revisit his abdomen area because his body keeps fighting an infection from something/somewhere and the Infectious Disease doc is exploring all possibilities. Steven has been on several antibiotics and was mostly lethargic yesterday. His body can’t recover from the Disseminated Intravascular Coagulation (DIC – inflammation in the body creating bleeding and coagulation issues, often caused by sepsis) which has been caused by the infection until they get rid of all the infections. Poor guy has been getting tired and discouraged. Knowing everyone is out there praying for him has helped. We really need those prayers more than ever. Please lift him up in light and love now.
I have been dealing with deadlines and travels and have not been able to update this blog as frequently during the past few weeks, and Steven was making progress on a daily basis. Some days were steps forward combined with steps back, but always moving forward in some capacity. They never had to do exploratory surgery, as CT scans showed no tear or perforation in Steven’s bowels or intestines. Instead, they placed a drain tube in Steven’s tummy (just like a peritoneal dialysis tube) to drain the fluid and flush it with antibiotics.
There was a rind of fluid that extended from his pelvis to his chest. In theory, the surgeon thought that at some point (probably back in February) Steven had a perforation in his small intestines and the body healed itself, but leaked outside the intestine. They think the body, trying to protect itself, sealed off that area allowing that pocket of infection to grow. All the anitfungals in the world would not make it go away unless you treat it directly, which is why they needed the tube to treat & get rid of it so his body could heal and recover.
A MESSAGE FROM HIS MOM
Denise said this recently to all of you who have been following his journey on Facebook after they made the decision to place the drain tube: “THANK YOU ♥ I just want to say how blessed we are as a family to have the support of thousands of people. Steven has received so many cards, gifts, and the money going into his fund…. it’s all so kind of you. Your prayers, positive thoughts & support are what have kept us going day after day, week after week, month …after month. I never thought when we entered the hospital on Feb 15th in St Louis that we would begin the journey that has become an emotional nightmare. Thank you … those words seem so inadequate, thank you from the bottom of our hearts to the tip of our prayers, it’s an awesome feeling to have so many people sending positive thoughts and prayers for our son. Good night Facebook family, may tomorrow bring a miracle in the form of a simple drain tube.”
If you would like further background on Steven’s journey the past few weeks, I have included updates from her during the past few weeks. Meanwhile, THANK YOU for your continued love, thoughts and prayers. Please continue to send them to Steven and the family.
Thursday, May 6
Steven came through his procedure just fine today, on this National Day of Prayer. He didn’t have to go on the vent and is breathing on his own. He already looks better than he did yesterday. Let the healing begin!
Steven had a good night however, he never gets quality uninterrupted sleep. I think it’s caught up with him because he’s been asleep now since 7:30ish. His lung X-ray looks better today so we pray that his lungs continue to recover. He’ll get dialysis this afternoon, his new drain tube is doing its job removing the infected fluid as they’ve had to empty the drain bag several times now. Hope to start Steven back on the NG feedings in a day or two and that he’ll get more and more healing slumber and not be in pain anymore. His heart rate is still really high and not sure of what’s causing that. He wanted to talk about his life yesterday and where do we go from here. He was relieved to know the doctors may have uncovered the mystery of his tummy fluid. He’s so precious… I’m so thankful to have him.
Sunday, May 9 – Mother’s Day
Last night Steven told me he wanted to have pancakes with me for Mother’s Day. So today, when his doctor came in, I asked if it would be okay if Steven had pancakes with me this morning, he said sure! So I trot down the hall, take a shower, go to the cafeteria and come back up with 2 breakfast trays of pancakes…and t…he nurse tells me she had to call the doctor to make sure Steven could have the pancakes and the doctor said no, he misunderstood me… he thought I just wanted Steven to watch me eat pancakes? (um, ok, I bet his wife has a really hard time dropping subtle hints.) Poor Steven, he had his heart set on taking a bite of pancake. 😦 Happy Mother’s Day to all you wonderful moms out there!
Tuesday, May 11
We found out this morning the infection is still in the tummy fluid. It took a few days longer than last time they cultured it to grow the yeast so that could mean they are making progress on it. They will do a CT scan tomorrow to see if the capsule of fluid is collapsing and healing or if they need to flush it with medicine. His lungs are so weak, it’s hard for him to cough all that junk out and when he finally stops coughing, he’s exhausted. His heart rate is still pretty high. He doesn’t feel that well, he’s felt nauseated a few times this morning. Please continue to pray for strength and for his lungs to get better. Thank you!
Wednesday, May 12
Steven has slept most of the day today. According to the doctor, his lungs are getting tinsy bit better each day. He got regular dialysis along with 3 units of blood this morning. We are waiting to go to CT scan to see if the drain tube is draining all the areas in his body. If it’s not, they’ll need to place a tube in… each pocket that’s not connected to this pocket of fluid. (I hope that explanation made sense.) He looks stronger to me…but I can still beat him in arm wrestling. 😉 As always, thank you all so much for your prayers, the cards, and all the wonderful Mother’s Day wishes!! Sometimes it takes me a couple of days for something to sink in….I never said thank you! Please know that my mind is in a constant state of ‘thank you’ even if I don’t post it.
Thursday, May 13
The CT was done this afternoon. We should get full results tomorrow. His potassium level was too high so he is getting dialysis right now along with 2 more units of blood. His heart rate is really high and his blood pressure is dropping. I don’t think they’ll be able to pull as much fluid off of him as they wanted to his blood pressure won’t tolerate it. His platelet count is really low and he’s losing a lot of blood in his stool today. After dialysis is over (around 7:30pm) he’ll get platelets to hopefully stop the bleeding. His white cell count is high so we know his body is fighting an infection of some sort. One of the docs started him on an antibiotic today that he hopes will take care of any bacteria infection he may have. They really don’t know what’s wrong with him, but they won’t stop until they figure it out. He went without the bipap for about an hour this morning. His lungs are slowly getting stronger. His body is zapping the calcium out of his bones so he may be getting medication for that soon. It’s always 2 steps forward and 1 1/2 steps back. Pray on!
Friday, May 14
His bleeding stopped after receiving platelets last night…that was a huge relief! His underlying issue is the infection which they are doing everything they need to do to make it clear up so hopefully when the infection is gone, everything will return to normal. He’s not getting dialysis today, he’s been breathing fine without the bipap mask since about 10:45 this morning but he will have to put it back on at night. His lungs continue to slowly improve. The CT shows a dense area in the lower left quandrant, they think it could be irritated lymph nodes from the infection. Steven is ready for wheelchair rides again. I’m going to ask the doctor today if it’s ok. His spirits seemed to wane this morning, I know he’s getting tired of being in the hospital, please pray for continued strength, healing and uplifted spirits. Thank you!
Steven had a great afternoon and evening. His lungs have improved so much today they can hear air in the lower part of the lungs tonight! He’s still without his bipap and taking really good deep breaths. The nurse can even hear those much welcomed gurgling/rumbly sounds in his tummy areas which is usually quiet…but you didn’t need a stethoscope to hear it as I had already heard it earlier in the day as I was admiring his new bed. He got a clinitron rite-hite air fluidized bed. Google it. Seriously, the nurse might find me curled up by Steven’s feet like a dog. Today was a 2 steps forward day!
Saturday, May 15
Steven is chillaxin’ today watching Joe Dirt on his DVD player. Still breathing fine without the bipap. He asked for milk this morning….not just any milk, he asked me for ‘the natural white kind’ which means don’t give him 2% skim milk. 😉 He took a few sips and then wanted some water. His coughs have been very productive which will help keep his lungs clear. He’s getting regular dialysis today, he’s been urinating a lot lately so his kidney is still able to rid his body of fluid but it doesn’t clean his blood. That’s okay, we’ll take that! So far we’ve managed to hang on to those 2 steps forward from yesterday. I didn’t wake up until 8:45 this morning!! I grabbed my suitcase to head for the shower and as I passed the nurses desk I jokingly scolded them “I can’t believe you guys let me sleep this long”! They told me I was family now. 🙂 Yep, it’s another good day.
Sunday, May 16
Another great day in the corner suite. Lungs continue to improve and he’s been exercising his arms and legs on his own. He’s still off his bipap mask and has spent most of the day without his nasal canula. (He doesn’t like to wear it) If I could photoshop that tube out of his nose, you could tell how handsome he is. I told him he went into the hospital as a boy and will walk out a man. Here he is today.
Monday, May 17
Infectious Disease doc feels the candida infection is gone. It’s been over a week since we sent off the last tummy cultures and nothing has grown. YAY! Now the focus shifts to his body recovering from the infection. His body has been in Disseminated intravascular coagulation (DIC) (caused by the infection), for so long that we pray he is not too weak to recover from it. Please pray for strength and that his body overcomes DIC. His lungs are recovering and we need his strength to follow.
Tuesday, May 18
Thank you for the cards he continues to receive. He’s also received an autographed CD and an autographed set of drumsticks from a couple of extremely talented musicians (and you know who you are) and we thank you! He started back on medicine to raise his blood pressure and it worked immediately. He’s been running fevers again so they started him on different antibiotics. He’s also started a medicine to lower his calcium levels which are running too high. He hasn’t been very alert today, this could be closely related to his high calcium levels. Once we get calcium under control he should become more responsive. His platelets were very low so they are giving him a couple of units today. I feel so thankful for his team of doctors over here. They are truly amazing and I can relax knowing they are working on Steven’s case and seeking answers. Please continue to keep Steven in your prayers/thoughts and know that we are very thankful for all of you helping us carry the torch to recovery. ♥