After a scary night on Saturday with low blood pressure and bleeding, on Sunday he received a unit of blood and two units of platelets which stopped the bleeding, and he got a large volume of albumin to raise his blood pressure. Steven had a much better day afterward with normal blood pressure and no more blood loss, sleeping most of the day. His stomach pain continued, and they planned dialysis for Monday with an ultrasound of his abdomen to see if they can get answers to the cause of blood loss.
Cultures were drawn from 4 ports Saturday morning to see if the Candida infection was gone. One of the cultures grew a staph infection, but they thought later it might have been a false reading since none of the others grew it, so they re-cultured that spot. They planned to tap his abdomen fluid Monday to culture if for the Candida, saying if it stays negative (5-7 days) they will put in a tunneled dialysis catheter. Steven is really looking forward to getting the port moved out of his groin so he can sit upright in a chair and get out of bed when he wants. We have all been hoping the infection is gone.
Steven again had a better day on Monday. His mom said he was running them ragged with his hunger desires, sending his dad or stepdad out for whatever he might be craving at the time, because he thought he must have whatever it was right away. Unfortunately, despite the food cravings Steven said nothing tasted right, taking only small bites of this and that, so nothing substantial. I’m sure his taste buds have been affected by both the chemo and the fact he’s had a lot of tubes down his nose, since the sense of smell has such an impact on how the taste buds work. His certainly must be askew from so much other stuff going on in there.
The ultrasound from Monday didn’t show any problems, so they thought his bleeding issue had been due to low platelets. It was a relief to know there weren’t any new issues. He was going to try to go 24 hours with his NG tube turned off, with hopes that if he does all right they can take it out. They rolled his bed outside again and he got to take in a little sunshine and fresh air on Tuesday.
On Wednesday Steven had an uneventful day, which in our book is good. He still complained of nausea and stomach pain, which could have been from an antibiotics dosing change last week, so the doctor was planning to check into that. Nothing had grown on the re-cultured site or on the other Saturday morning cultures, so things were looking up for a tunneled catheter by the end of the week. They didn’t culture any more fluid from his tummy, with possible thoughts on going ahead with the tunneled dialysis catheter if blood is clear of infection.
Yesterday was quite a worry because Steven’s tummy really needed to be drained again, but the PICU doctors are concerned that sedation would affect his breathing. His mom said they can’t really move forward in his strengthening until he’s able to get out of bed and move around … but they can’t do that until they get the dialysis catheter out of his groin … and they can’t get the catheter out until his tummy is drained so his breathing can improve enough to be sedated. Whew! She said it’s all like a reverse domino effect, but that Steven wants to live! The doctors are trying to minimize risk, and Denise said she was having difficulty making the doctors understand that her son is different. She and his dad believe the risk to take these baby steps forward will pay off because he has consistently beaten the odds to make it this far.
Steven’s blood pressure remained low throughout the night and into today, which is part of the concern as well. They tried lots of albumin, a unit of blood, and a unit of platelets this morning, but nothing was working. They did start some frozen plasma, and his blood pressure appeared to be rising a little. They had to put the Bipap mask back on him last night around 11:00 p.m., and he’s been fast asleep ever since.
Dialysis is scheduled today, so we’re hoping that will help clean out his system and bring him back around. His phosphorus levels are dangerously high for his condition. There are plans to talk to the Nephrologists and Oncology to go over risks and options for draining his tummy fluid yet again, and whether or not he’s strong enough to handle more.
This is a critical time for Steven. Please send good thoughts and healing prayers for strengthening so his doctors can see that his strength of body matches his strength of heart! His blood pressure needs to be much higher so he can be ready for the next steps. He needs LOTS of love, good intention and prayers coming at him right now, so THANK YOU for your support of our sweet boy … our WARRIOR!