Anya walked 440 feet yesterday! Yes, it was a big accomplishment considering where she was 13 days ago when she was completely unrecognizable with a ventilator tube down her throat and completely sedated in the ICU. Of course, she walked with the assistance of a ventilator, but only because the nurse practitioner wanted her to do that first. Next time, she’ll most likely do the walk with a trach collar.
Anya still has the two chest tubes in her, but they clamped them yesterday to see if the pneumothorax would come back and they haven’t, so I imagine that they will most likely remove the chest tubes in the next day or two. The chest tubes are each connected to a big box, so it’s hard to get around with these tubes and boxes attached. I think once these tubes are removed, then she’ll be able to get around much better.
They removed the IV line that was coming out of her neck because it’s been in there for way too long. They replaced it with a PICC line in her left bicep area, but we found out yesterday that a clot had formed around the line, so she’s going to have to be on blood thinners for about 4-8 weeks. I asked the doctor if this will have any impact on transplant and he said “no”. However, with any blood clot, there is a risk of the clot going into her heart and/or lungs and causing some “catastrophic” damage. Honestly, the doctor didn’t seem too concerned about it, even though he used the word “catastrophic”.
Anya had a bronchoscopy this morning. The same procedure that punctured her lung a few weeks ago. This time they did not do a biopsy. The pulmonary doctor said that she will most likely have to do a bronchoscopy every 2-3 weeks to clear out the mucus in her lungs until she gets transplanted.
Here are the goals for the next week:
- Remove chest tubes
- Stay on the trach collar for at least 12 hours straight (her max has been around 7.5 hours)
- keep exercising
- increase feedings to 60-80 mL/hour (55mL/hour x 24 hours x 1.2 Cal/mL = 1584 calories)
If Anya can stay on the trach collar for 12 hours, then they’ll do a swallow test on her. If she passes the test, then they can cap the trach tube (or use the passy-muir valve, as a few of you have mentioned) and get her talking again, and maybe even eating. She hasn’t been able to talk for a little over 2 weeks now. She hasn’t drunk or eaten anything, except for the tube feedings, for about a month now. Can you imagine that?
That’s really about it for the past 5 days. Thanks everyone for sending gifts. Whoever sent the blue blanket, please fess up, so that we can thank you. Also, thanks to all who sent cards!