Not the news we were hoping for. But also not a surprise. Eli has typhlitis. There is inflammation in his bowel. This will be treated with antibiotics, fluids, IV nutrition to allow “gut rest” to continue, pain medication to keep him comfortable, and close monitoring of his blood pressure (to make sure it doesn’t get too low) and heart rate (to make sure it doesn’t get too high) They will draw more frequent labs to monitor certain things through his blood. We have been told to prepare for about 10-14 days of an inpatient stay while he heals. As I write this I received an update from the resident that Eli tested positive for C-Diff. Now we have a culprit for the bacteria in his bowel. Right now Eli is unable to fight this off on his because he doesn’t have any white cells post-chemo. Treatment remains the same as listed above, with the addition of another antibiotic to bring his total up to four. He will also be receiving platelets again overnight.
The good news at this point:
1. The scans do not show any sign of perforation. Perforation would be a tiny tear in the bowel which would allow air. That would require emergency surgery.
2. All his vital signs and lab work indicate that he is stable enough that he does not require a transfer to the icu.
I am trying to focus on the positives and be brave and be strong. But quite honestly, I am upset and scared and nervous. Things can make a turn for the worse at any given point. We choose to believe this will be a really hard couple weeks but someday this will be a foggy memory in the rearview mirror. It’s just especially hard now because we have hit a point in treatment where our entire family is just tired. Tired of unpredictability. Tired of last minute shuffling. Tired of being separated. Tired of watching Eli suffer. Tired of sacrificing what we really want to be doing for what we have to do. The last few days have been exhausting. I was really hoping for Eli to bounce back after this last chemo so we could enjoy the remaining days of August together (in between a million appointments and scans that he already has scheduled for the next phase.) I was hoping to spend some quality time with the big kids before they returned to school. I was hoping to be able to do something for myself for once. The baby? Did I mention him? Sadly, sometimes I forget the we have a baby. I want to spend time with him too! So this is a big bummer for all of us. But it’s the biggest bummer for Eli because he’s the one who physically feels the worst.
I did leave our room for a bit while Chris was here. My favorite nurse saw me out there and came over with a huge hug. She sat with me for a while and we talked and cried together. My heart was just so heavy. I was feeling so sad and scared and angry. And now, as I sit here typing, my mood is shifting to be lighter and I’m feeling more positive. Maybe the good cry helped? Or maybe it’s because Eli (although still very sick, feverish, and in pain) is in a better mood. (And my emotional state is typically correlated to his mood and state of well-being.) It’s obvious that his pain is being better managed. Eli is mostly sleeping, but randomly talks in his sleep or wakes up to say silly things. He’s being cute and funny and talkative with the nurse and resident, making all three of us laugh. That makes my heart happy in the midst of all this pain.
Thank you all for your continued prayers, love, and support. We know that God will carry us through this. But most of all, we just pray for Ei’s total and complete healing.