Today I ran into Hope's hospital room in the midst of rounds. Maria had spent the night, but I didn't want to miss rounds in the morning. I confessed my oxygen tampering to the doctor and he laughed. He had wondered how she'd come down and couldn't find anything in her chart. He told me that I knew Hope well and could continue, as long as I kept them informed. Just 7 hours later, I had Hope completely off oxygen and removed her uncomfortable nasal prongs. Praise Jesus for this wonderful step in the right direction. Now that Hope is off oxygen, especially blended oxygen, we should be able to take Hope out in the hallway for a walk sometime soon!
This afternoon the GI team came to meet with me after a meeting with the paediatric team. I'm not sure why we hadn't gone back to this earlier as we have tried this once before with Hope. They have decided to feed Hope through her NG (tube to her stomach) and an NJ (tube that goes past the stomach). The NJ was inserted this afternoon and they began feeding her through it this evening. Hope is receiving 15mls an hour through the NG and will have increasingly more feed put into the NJ as well. This will help us achieve full feeds at a faster pace than Hope's stomach alone would allow. Once we get off the liquid nutrients, we can get rid of the PICC line!
We still have a major issue here, the clot. They have decided that there is no easy way around this and that no matter what we do, we are taking a risk. Once the liquid nutrients (TPN) is no longer needed, they will wait 48 hours to be sure we're okay and then pull Hope's PICC line. We are asking the world to pray that the clot at the end of the line will end up in the lungs or disappear before the line is pulled. The lungs work as a filter and can keep the clot from going anywhere dangerous. If it does not go through the lungs, it could end up in the brain and cause serious problems. We need a miracle and we know that God is able and are asking Him to spare Hope once again.
I am trying not to get ahead of myself, but find it hard to control myself some times. Now that Hope is off oxygen and we are closer to removing the PICC line...maybe there could be a chance of a day pass for a few hours on Christmas day?? I'll wait until she's more stable to bring it up in rounds, but I'm certainly thinking about it and hoping for this miracle. Hope will need to be tolerating her feeds more for this to be possible...at this point that does not look too good, but I refuse to give up on her.
I used to love the movie 'Miracle on 34th St' and this year I am asking you all to join me in praying for a miracle in Hope's body. Thank you for believing in a little girl with only half a heart. She has the odds stacked against her, but God does not care about the odds and is capable of the impossible.