We can hear it. The wheezing in the chest. Yup. Maya has a cough and she’s been persistently coughing for a couple of days. No fever but we know that there is something going on in her chest. It’s most likely something she picked up, although we haven’t had too many visitors at home. Something to keep an eye out for. And we push the irrational worry that wants to bubble over.
We had our regularly scheduled chest CT scan this past week. Two weeks ago, we had a chest CT. It showed something else; something called Ground Glass Opacity. etiology could be one of many things.
- Bronchiolitis Obliterans
- fungal infection
- etc etc.
Our BMT Doctor was very worried. Just like that, our back is against the wall. I tell myself, here we go again. we’ve been here many times before. We’ve always came through. I’m sure we’ll get through this again. On this past Tuesday, we didn’t know enough to be that scared. But, as reason finds us, the dread over comes me. As mind spirals out of control, the first thoughts are, will I need to give her one of my lungs? Will it even fit? Is it even healthy enough for my daughter? Well… if it comes to that, I would happily give her mine, and more.
Settle down… We need to keep our composure. So, Bronchio-Aveoloar Lavage (BAL) was ordered. Basically, they take a camera down her lungs to take a look, and wash the inside of her lungs with some saline to collect whatever might be growing inside. We’ve had this procedure before and although it sounds scarey, it’s relatively easy procedure to go through. Maya is under anathesia for the procedure.
The fear is simply this: Because Maya’s immune system is still not 100%, she is under antibacterial (for Microbacterium Avium infection), antifungal (caspo-fungin) and antiviral (acyclovir). Still, within two weeks, the GGO has gotten significantly worse. If we are dealing with an infection of sort, we have not much else to give her.
On top of that, she is receiving pulse steroids for Bronchiolitis Obliteran (BO). If it is BO, this is also a grave issue. What can we do aside from the pulse steroids?
In short, we are running out of things we can apply to help Maya. Moreover, everything that we have thrown at Maya seems to have significant side effects as well work against each goals. For example, giving Maya steroids weakens her immune system. Hence, she is not able to fight off infections as well. If we stop the steroids, what do we do about BO? And antibiotics, antifungals can be harsh on the liver as well as the kidney.
So, on thursday, Maya had a BAL procedure. Everything went smoothly and we were able to get a good mucus sample from Maya’s lungs. Outstanding! Except… we have not found anything… I mean, yes we did see a couple of different types flu viruses and that’s all good, but flu viruses do not typically cause GGO. We were thinking that the GGO was the result of aspergillus fungal infection, but that too came back negative. So, we don’t yet know what is causing the GGO.
I was mildly upset enough to get snarky at the doctors. At this age, we still can’t identify bugs easily enough… You have good mucus sample. How come you can’t seem to find the bugs? As is typically the case, we’re on a “fishing expedition”. Since we were on caspo-fungin for anti-fungal, if it is a fungal infection, it is not working. So, we’ve switched over to voriconozol. Now, voriconozol level takes quite a while to build up in the system. So, until we get a good serum level, we’re also on Ambisome, which is harsh on the body. We also stopped rifampin, which was one of the antibiotics used for microbacterium Avium, which works against voriconozol.
At this point, we don’t know what is causing the GGO. Hopefully, we’ll be able to find the cause of the GGO in Maya’s lungs. But if nothing comes back in the next two three days, we may be in for a lung biopsy.
Now, if you look at Maya today, you would see a happy go lucky girl, albeit a girl who coughs all the time. But you would see an upbeat little girl who wants to be outside playing in the snow with her dog. Maya wanted desparately to be outside so she can spend time with Tofu on her first winter season. Again, Maya is well enough right now. But we have no room for any additional degradation in her lungs.
Maya was well enough to get a day pass. So, we came home to relax. And Maya took full advantage of her short lived freedom. She spent a good hour or so outside with Tofu. Maya loved it and so did Tofu.
So, nothing to do but wait and make sure that we pass the time, until we find out what we’re dealing with.
Maya is just an amazing little girl. She sure keeps us on our toes…