This hospital stay is never ending it seems. We thought maybe when her counts recovered, we could go home. They are just starting to recover now but there’s no knowing when Alli will be allowed to go home. On Monday night she started needing oxygen. The doctor that night seemed to think it was from the pain meds that were just making her breath shallow even though she had been on them for days. Alli said her chest just felt tight, like it was hard to get a deep breath and she was having a hard time swallowing at times. The next morning the doctor decided to do an x-ray to see if it was maybe just caused from all the time she’s been in bed the last week. The x-ray came back showing concerning signs of possible infection so they decided to do a CT of her chest and neck. 

The ortho surgeon also came in and talked to us about possibly cleaning up the wound and reclosing it. It has gotten much bigger and continues to separate. The wound care nurse said she thinks it will continue to separate along the incision. The ortho dr said he thinks it’s unlikely it will close on its own. But we have to consider a few things before jumping to surgery. First, her counts. To do surgery her ANC has to be around 500. That takes time, she has been between 0-20 for the last 2 weeks almost and is just starting to come up. Today her ANC was 90. Second, is the delay to chemo. She is already delayed as of this week for the next round of chemo. She was supposed to start Tuesday but with her numbers low and an active infection they obviously cannot do chemo. Doing the surgery would delay chemo an additional 2 weeks, so we have to think about risk vs benefit of delaying chemo more. They said another option would be to wait until chemo is over to do the surgery but that would mean 10+ weeks of daily dressing changes/wound care and an open wound for that long and that’s assuming there are no more delays. Overall, not a great choice either way. I know Allison wants the surgery sooner than later, she wants to get back to where she was with her progress using her prosthetic. Delaying the surgery would probably mean she would go another 4+ months without being allowed to walk with her prosthetic. But all of that is kind of moved to the back burner because of what the CT showed. 

The CT showed a new infection in her lungs. It was worse on her left side, but it’s on both sides of her lungs. It also showed a possible infection spot on her liver. She has been on a LOT of broad-spectrum antibiotics over the last 10 days and should not be sprouting new infections. The team did a Karius test to see what bacteria could be causing this, but that takes up to 72 hours to get back. They also are prepping her for a procedure called a bronchoalveolar lavage (BAL) where they basically do wash of part of the lungs and then take the fluid out and test it for bacteria. This will also take 48 hours to get the result. They will do an ultrasound this morning to see if they can get a better look at the possible abscess on her liver, but it may be hard to see they said. They want to try ultrasound to see it better before anything else because it is the least invasive and minimal risk way to try. If that doesn’t work, they may need more additional imaging but we will cross that bridge when we come to it. 

They said that when there are multiple sites of infection like this a lot of times it comes from one source. The heart is the most likely culprit, if something is growing there it easily can break off pieces and spread throughout the body. So, they also ordered an echo of her heart to see if that could be the root cause. The good news is Allison is otherwise stable, no fever or other vital sign or symptom changes. Sadly, her CRP went from 8.8 to 21.7 this morning, higher than it was when we thought maybe she had necrotizing fasciitis. That is extremely concerning considering all the antibiotics she is on but we are waiting to see doctors this morning still to see what they think about that. 

 

Next steps: liver and heart ultrasound, and BAL procedure. Wait 48-72 hours for all the tests to come back. Watch for any change in symptoms, especially neurological changes (another likely spot of infection is the brain). Consider how to change antibiotic treatment plan. 

I am trying to write fast because it's so busy here but we can use the prayers! Sorry if this is confusing or full of typos! I will update when we know more.