I think our doctors are afraid to take their eyes off of Phoebe. She has been affectionately nicknamed "two visit Phoebe", meaning that although things seem fine in the morning when the doctors visit, the afternoon could tell a completely different story. I think they were so excited by how well Phoebe recovered from her many issues last week, that they started planning her homecoming perhaps a bit too soon. We have since learned that they aren't ready to take their eyes off of her, or at least not yet.
Earlier this week, although Phoebe's oxygen levels were perfect, she appeared to be having some trouble breathing. She had started the slow transition back to tube feeding and was being weaned off of the IV nutrition, but the doctors were worried that it may not be safe to feed her. They were concerned about acid reflux and her feeds aspirating into her lungs and causing a very big problem. So, her feeds were put on hold and the IV nutrition was turned up again. She had a scope of her throat and vocal chords done (I held her while a small camera was inserted into her nose to look down her throat), and she had an x-ray of her upper chest and neck. Both were very uncomfortable for Phoebe, but also very necessary as they showed that although there is some swelling and narrowing of her airway, there is no real damage. Since Phoebe was intubated during her last surgery, she has had a persistent cough and her voice and cry have changed. The worry among other things, was damage to her vocal chords, but i'm happy to report that they looked good. Actually, today, for the first time since the intubation, she let out a very loud and hearty cry. Only one cry, but it's a start.
Now that it has been established that there is no real damage or obstruction, and that it is only swelling, Phoebe's feeds have been restarted. The doctors are worried that she will have difficulty digesting and with acid reflux so they are starting very, very slowly. Painfully slowly. She is being fed every 4 hours during the day, and they are starting with 20 mls, and increasing it by 5 mls with each feed. Phoebe should be drinking about 200 mls every 4 hours, so at this rate we will hopefully be off the IV nutrition by the end of next week. Once her feeds are established and well tolerated through her feeding tube, we will be able to start trying to feed her by bottle. And hopefully solid foods will be introduced then too. It is impossible to predict what Phoebe will do, if she will take to the bottle again, or refuse it completely. It has been four weeks since her last bottle feeding. Will she want to pick food up and feed herself, or will it happen by accident? Either way, one day she will eat. This is just another obstacle on her road to recovery. The wonderful thing is that this time when she starts to eat again, there won't be anymore cycles of chemotherapy to cripple the progress that she makes.
As for home, although Phoebe is still doing really well, the doctors want to make sure that she doesn't have any more surprises up her sleeve before they send us off on our way. Either that, or she is just so cute, that they don't want to see her go. Today we were told that Phoebe should spend 100 days isolated in the hospital, and whether she will end up doing that or leaving earlier is unclear at this point, but either way, I won't believe that we are going anywhere until our bags are in the car, and the car and we are on the 401 heading back to Ottawa. Although this may seem like bad news, I am somewhat relieved because now Phoebe will hopefully be heading home healthier, with fewer medications, and therefore more opportunities for her to just be her 10 month old self. And for all of us to catch up on all that we have missed.