Anya spent exactly 172 days in the hospital; 5 months and 19 days. Last Thursday, she came home.
It’s been such a long journey. SUCH A LONG JOURNEY. Coming home was a big deal. A HUGE DEAL. Anya’s mom captured the moment we stepped in the door on her ipad:
And here are the doggies seeing Anya for the second time in about 6 months:
Just a little over a week ago, we were still in the ICU. And now, we’re home. What a feeling.
We still have a little ways to go, but I think the hardest part is over. The plan is the stay in Houston for several more months until the transplant team gives us the okay to go home-home (Virginia). If all goes well, then we should be back by the spring time. Fingers crossed.
So, I feel like everything is pretty much under control now. The biggest issue is that Anya still has a little bit of “mush” at the bottom of her lungs, in her lower lobes. Yes, that is the term that the doctor used…”mush”. The doctor doesn’t know exactly what’s causing it. It could be the pseudomonas (bacterial infection), it could be the perfusion/ischemic injury (lack of blood to the lungs), it could be “a little pneumonia”…whatever it is, the plan is to do weekly bronchoscopies to clean out the lower lobes of her lungs. The “mush” is too far down her lungs for her to cough it up herself, so they need to go down there with a tube to clean and suck it out.
With that said, Anya’s breathing has been pretty good. If I had to guess, I’d probably say that her lung function is around 60-70% right now; much better than the ~15% that it was pre-transplant. It may take several more months for her lung function to get back to full capacity. Some post-transplant patients don’t see their peak lung function until two years out. There’s still a lot of healing that needs to be done.
What happens now? Well, we have a clinic appointment once a week where Anya goes to the outpatient center to get a full blood panel, spirometry test (lung function), x-ray and/or CT Scan, and then a visit with either the nurse practitioner or a pulmonologist. From there, the transplant team determines whether to add/remove/change her drug regimen and assess her overall health. Currently, Anya still has an active Pseudomonas infection and she is still being treated for Mycobacterium Avium Infection (MAI) and Mycobacterium Abscessus. They’re all under control with the help of a few antibiotics. It’s common for CF patients to colonize these bacteria in their lungs, even after transplant, so she will most likely be on several antibiotics for several months, and some for up to a year or more. With that said, these bacterial infections are nothing new to her. She’s had to deal with these infections before and after her first transplant too.
Anya still has a trach, which is capped off. They want to keep it in her for the bronchoscopies and suctioning, as needed. I don’t think that it’ll be in her for that much longer though.
She still has a feeding tube as well. The plan is to keep the feeding tube for use at night, which will give her about 1,000 calories while she sleeps. This nutrition will be in addition to whatever she eats during the day.
Overall though, I think Anya is doing great. She looks great. Her spirits are so much better now that she’s at home. And the spunk is coming back. We’ve gone for a few drives around Houston over the past few days. Up until Friday, the only places that she’s visited in Houston were Kindred and Houston Methodist. Now, she’s been able to see some of the places that we’ve frequented while she was in the the hospital. We’re still trying to avoid crowded places and if need be, have her wear a protective mask, but just being able to go outside without being tethered to a ventilator is a gift in itself.
Our first clinic appointment is this Wednesday. They’ve also scheduled a bronchoscopy for Thursday. Other than that, Anya is just enjoying her time out of the hospital as much as she can. She just started binge watching Orange is the New Black. And catching up on all of the shows that she missed while in the hospital. There’s a ton of shows that she’s missed over the past 5 months, so I think that’ll keep her busy while we’re waiting for the final okay from the team. Hopefully soon, they’ll release us to go home-home. I can’t believe that we’re even talking about that…