A decision, and yet another day

We have decided to transfer back to UCSF since a transplant does not appear to be in Cora's very near future. There are still so many uncertainties, but being at UC allows us to be closer to home and we have a team of doctors who know Cora very well and will hopefully be able to take a fresh look at her now that things have changed. Of course we can always transfer back to Stanford if things turn again and a transplant is again the only and best option.

With no notice, I received a call this afternoon that a bed was ready at UC and that they had sent a transport team to pick up Cora. I scrambled to get the kids to Grammie and Papa's and found a friend kind enough to give me a ride down to Packard (thank you, Carolyn.) Jay was already there, but he would need to ride in the ambulance with Cora, and we still had to pack up the Ronald McDonald apartment and pick up Jay's car. Naturally, when I arrived at Stanford after all that rigamarole, we were informed that there had been an administrative glitch and she wouldn't be transferred today after all. I really could do without these types of glitches.

The bright spot of the transport mix-up was that I got to see Cora today, when I wasn't expecting to see her until tomorrow, and also to overlap here for a night with Jason. We will see if we're moved tomorrow; likely it will be Monday before the conversation will begin again.

Overall Cora was stable today. She has been flat on her weight gain for the past few days, so they increased again the volume of her continuous feeds. She still receives the intravenous lipids in an effort to bulk her up. There was some evidence today from a gastrointestinal test that she may have difficulty absorbing nutrients. This could possibly mean that her problems gaining weight may be in part due to something in addition to her cardiac difficulties -- namely an issue with the way she metabolizes food. So, we will be referred to a GI team for evaluation in the coming days. Just put it on the list.

Today marks twelve weeks since we re-entered the hospital on this stay. I'm tired.

Thank God none of us can know the future. If someone would have told me on that Friday, December 28th when I called our pediatrician feeling so worried about Cora, that we would have entered the hospital that day and would still be in a hospital on March 22nd, I would have cried. After all Cora had already been through in November and December, I just wouldn't have thought we could top it.

But we didn't know then. Just like how from my seat now I can't see how much longer this journey will go on.

Each day we just get up, face what's in front of us, fight the little fights we can, and try to let go of the bigger intangibles. Stay in the moment. Walk the tightrope. Down look down. Don't freak out.

Oh yeah, and try to get some sleep.