I am up early, quiet, as the other 10 members of the family are still sound asleep. I am getting ready to go out for a 26km run this morning and psyching myself up as it is minus 18 degrees outside. Training for a May marathon is Canada makes you run under extreme temperatures, going from minus 20 degrees up to plus 30 degrees in a 4 months span. I love running though as it keeps me focused, positive and healthy. And if the caregiver does not take care of herself, who will???
We will be going back to the hospital tomorrow as the girls will finally get their long awaited for g-tubes. A gastrotomy tube (g-tube) is a tube inserted through the abdomen to deliver nutrition directly to the stomach. A nasogastric tube (NG tube) is passed through the nose and down through the nasopharynx and oesophagus to the stomach. The girls have been on NG tubes since the end of November. NG tubes need to be replaced on a weekly basis and from what I can see, it is not a pleasant thing each time for the girls. I on the other hand have become quite a pro at inserting them! But the girls never got used to the procedure... They would see me get the stuff ready and start crawling away from me, giving me the evil look. Also, NG tubes can move from the stomach to the lungs. This means that each time you are to inject meds or food, you first have to check placement of the tube by blowing air in the tube with a serynge while you listen with a stethoscope for a ''pop'' sound in the stomach. G-tubes don't move, therefore, the checking placement step will be eliminated. So no more tube and tape visible, and easy to yank out. This should make things slightly easier. However, I must admit it hurts Michael and I that our little girls need that to survive. We are a bit nervous about learning to take care of the site (stoma) but I am confident we will be ok. Anyway, we do not have a choice. You do what you've got to do.
The hospital will call this afternoon to let us know what our OR time will be. The procedure is expected to take 90 minutes for each girl. We are told that, providing everything goes well, we could be out of hospital as early as 48 hours later.
This will be a busy week but we managed to organize care for the other 7 wonders and Michael and I will once more split shifts in hospital, ensuring our darlings are never alone and that the home front is also covered. We are getting used to this!
As far as the transplant thing goes, we have one more step to cross before we meet the transplant team. We will be off to Toronto (Sick Kids Hospital) at the end of the month to meet with a hepathologist specialized in Alagille syndrome. She is the one who will make the last call. We sure are keeping our toes and fingers crossed that we will make it to the list.
Will update the blog after the surgery, hopefully tomorrow or the next day. Enjoy a nice Sunday everyone!
