A hot topic in our neighborhood is whether we should add speed bumps to decrease vehicle speeds. As parents of small children, we are, of course, in favor of them. What harm can come from slower speed? Even if only one potential incident is avoided because of speed bumps, aren’t they worth it? One is enough for me.
Sometimes, though, I’d rather not deal with the proverbial bump in the road. We hit our first speed bumps in the BMT recovery process. Carter was readmitted to the hospital due to a fever. When a patient post-BMT with a port or central venous line (CVL)— Carter has both— presents febrile, it is standard to draw blood cultures from all lines, begin preventative antibiotics and admit for 48 hours of observation while awaiting culture results.
Our hearts sank when Carter’s fever spiked last Monday, the 10th. We collected ourselves and our things for hospital life again and quickly got to the emergency department. We were already thankful for the Ronald McDonald House, but we are even more so now. We were at the hospital in minutes.
That Tuesday was supposed to have been the day for Carter’s CVL removal. This, for us, is the second significant milestone in BMT recovery after initial discharge. We had been anxiously awaiting that day to have a little win closer to the big win and to have some comfort for Carter. Carter was incredibly uncomfortable with its placement, and I was still uncomfortable with all the nursing duties that came with it. However, Carter did inform me that I had moved from a C- to a solid A in my abilities. (That was a big mom win for me!) Carter also yearns to get back outside and throw a baseball or football.
His CVL potentially being removed on the earlier side like this was a possibility because he hasn’t had a transfusion since September 11th, and he still has a port. Since we weren’t using the line clinically, removing the risk of infection from the lines was best—the chance of this being postponed quickly crushed Carter’s spirit.
To our delight, our team agreed that Carter’s CVL could still be removed. He had been afebrile since that Monday night, the line cultures were still negative, and his counts were still in great ranges. The CVL was successfully removed Wednesday, the 12th, and we were discharged.
Looking back to the weekend prior, we may have allowed Carter to push himself too far. With our doctor’s approval, Cannon came to stay with us for the weekend to celebrate his birthday. We were all basking in the glory of being together. It almost felt like “old times.” We celebrated Cannon’s birthday just like he asked—together as a family, with cookies and a kickball game. Carter was thrilled to be with his brothers and family.
At our clinic visit last Friday, Carter’s labs still looked fantastic. He was swabbed for a full viral panel to determine why he wasn’t back to feeling 100%. He tested positive for Rhinovirus/Enterovirus (the common cold)—cue Dad’s rhinoceros 🦏 jokes! A virus can, and did, take him down quickly. He also received his monthly inhaled pentamidine treatment. This helps to prevent fungal infections in the lungs since Carter is on immune suppression medication.
Over this past weekend, Carter did not improve. His symptoms became less viral and more gut related. Post-BMT, you hear the same question at every visit, “Any changes to skin or gut?” These are the two places Graft-verse-host disease (GvHD) typically presents first. GvHD, in short, is the donor’s cells (the graft) recognizing Carter’s (the host) remaining tissues you cannot remove as foreign and attacking them. In the acute form of GvHD, this is most commonly the skin, liver, or gut.
We have been watching for signs of GvHD vigilantly. We knew Carter was at greater risk for this to develop based on the HLA mismatch of our donor. By Sunday afternoon, it was clear that Carter was experiencing the symptoms of gut GvHD—loss of appetite, nausea, and vomiting. We spoke to our doctor and were advised that we would be readmitted to the hospital for a workup and treatment decisions.
So, here we are, back in the BMT unit. Carter had a colonoscopy and upper GI endoscopy on Tuesday. Those results and pathology are normal. We caught the GvHD early, and he’ll be treated for the clinical symptoms. The first line of treatment is steroids, followed by a wean. The steroids act as a further immune suppressant to calm the attacking cells. We began the steroids yesterday afternoon.
Life post-BMT is a marathon, not a sprint. The last ten days have served as a reminder that we need to slow our speed, anticipate the speed bumps, and give thanks for the tremendous progress we have already made.
While we are still dreaming of going home—hopefully, sooner than later, we will spend our time in the slow lane while Carter recovers.
