Today is the day

After five long months at SickKids Hospital in Toronto we are taking Sasha home. Not as we expected and hoped, to continue our lives happily together, but to let Sasha go to sleep in her home, in our bed, surrounded by our love, at the time of her tired body's choosing, in as much comfort as we can provide.

This blog will give us a chance to celebrate her life and record her days at home.

Sasha has a severe form of Alagille Syndrome, born without a pulmonary artery and a very compromised liver that resulted in an early and severe case of portal hyptension.

Despite Sick Kids telling us there was great risk in surgery, her first shunt was a great success and we returned home within two weeks. She developed the severe itchiness that is a mark of Alagille along with an infectious laugh, a love of people and that wonderful baby curiosity. Just as she was starting to walk, we prepared for a second cardiac surgery.

We were bumped a number of times. And the foreboding and fear grew.

Her second surgery on December 14 began like the first, with internal bleeding. However this time the bleeding did not stop after the cardiac surgeon went back in. With the loss of blood to her lower organs, her liver went into failure. After her liver numbers stabilized she started to poo and vomit blood. When surgeons cut her open to see the site of the bleeding, she bled so much they quickly stiched her up. A fistula resulting from opening up her belly and she has been venting tummy fluid and blood for more than 3 months.

After 5 months of hope that some proceedure would right the balance in her little body after her second cardiac surgery, we decided not to go ahead with a TIPPS proceedure that might have stopped her GI bleeds by alleviating the portal hypertension that has developed in hospital (or possibly was lurking before).

When we looked at where she is now, and how far she has come back since the weeks following the surgery, we felt: enough.

We didnt want to put her through another 2-3 proceedures to give her maybe 1 or two more year of life, or not, with a high chance of death on the table, or coma, or confusion where she didnt recognise us for weeks.

Now she knows she is loved, she is not in pain and heartbreakingly she still has smiles and laughter for those around her.

When you enter the world of paliative care, you are experiencing life and death at the same time. We are all living and dying. With Sasha we are trying to live life to the fullest possible even as we know that she likely has only 3-4 days before she will prefer to sleep over waking.

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