Tuesday, 12 March 2013

Bring on the Fat!

We want to first celebrate the fact that the lab got a false result for Hope's platelets!  Her original sample came back at 29, but it was actually 95 when re-taken.  Praise the Lord that was a mistake and not a sign of kidney failure, liver failure, leukemia or any of the other horrible options.

Hope had a good day today.  The doctors are being very cautious with her feeds, perhaps overly.  I try not to push them too hard as I know that it's safer for Hope to take it slow.  She remains on 6 mls an hour, but was moved to regular breast milk today.  She is now getting the fat put back into her diet and we are hoping the Chyle does not return to her lungs.  She was X-rayed this morning and there was no Chyle, but her lungs were wet.  The doctors had been trying to get Hope off IV diuretics, but have decided to hold off and wean her more slowly.

Tomorrow at 1pm the doctors will meet to discuss Hope once again.  The Cardiologist, GI specialists and her Complex Care Team doctors will all sit together and make a plan.  If all goes well, we should be beginning our training for home TPN (liquid nutrients).  That way, regardless of what happens with Hope's feeds, we could bring her home in 4-6 weeks when our training was complete.  This is exciting, although I will be more excited if the breast milk works and we can bring her home sooner, without TPN.

Hope's spleen was enlarged on the ultrasound yesterday.  This has been a constant for her, but it was 1cm larger than the last scan.  The flow is still good and they don't feel there are any clots, but think this is the source of her low hemoglobin and platelet counts lately.  She should be well over 100 with her platelets and over 120 for her hemoglobin.  We are praying this is nothing serious and will resolve on its own.

Shawn and I have been busy in the evenings between returning home and getting Sadie to bed.  We have been trying to eat through the frozen things in our freezer and have done very well.  This week we took big trips to Costco, Superstore, M&M Meats and our favourite pre-made and frozen pizza place, Coco Brooks.  The freezer is re-stocked with quick dinners to help us out after long days at work and the hospital.  Still not doing so well with the motivation to clean in the evenings though.  By the time I clean up from dinner, do laundry and tidy, the deep cleaning is too much.  I long to have Hope at home and go back to being able to do these things during the day while she naps and Sadie watches a movie.  I never realized how much of a blessing it is to be a stay at home mom.  I knew it was a privilege, but never understood the true blessing it was to our entire family.

I continue to believe in the impossible for Hope.  Today when I mentioned to one of the doctors that I hoped to get her home without TPN really soon I got a funny look.  As she left the room she said, "that's overly optimistic don't you think?"  It was not said in a rude or demeaning way, more out of concern for my heart and the disappointment I'll feel.  I simply said, "maybe".  I didn't have the energy to explain that it was too late, I'm already in a dangerous place and there is no turning back.  I continue to pray for our miracle.

1 comment:

  1. And we are also praying for a miracle for Hope. Looking forward to seeing her again on my shift at 5pm, so glad to hear she is doing so well.