It was very hard to get to sleep last night because I kept thinking of Sebastian and his parents. I hope I can turn all my sadness into loving vibes for his mom.
Here is the loving kindness meditation again:
May Sebastian’s family be wrapped in a blanket of love and tenderness.
May they be held and rocked in their grief.
May their memories and stories be heard as sacred.
May their child’s life force bless the world with each sunrise.
In time, may their hearts be healed and at peace.
Sebastian’s family is from Eugene, Oregon. If you’d like to make a contribution to a fund set up for his memorial please visit this site:
Another mom pointed out in her blog post, that it is a reminder to what donor families go through when they lose their children. It has made their grief feel so much more real for me. I am so grateful to them, for their gift amidst their devastating pain.
In more sad news Destiny died yesterday as well. She needed a bone marrow transplant but there was no match for her in the registry. I mentioned her in the People Can Be Awesome post. Please consider registering to be a bone marrow donor! I am so sad for her family. It has been somber here. There are too many kids we know back in the hospital. This is part of the world we live in here.
So here’s the good news! Hana was discharged today. Everything is back to normal and they are calling it a reaction to anesthesia, which seems to be a very mysterious corner of medicine, especially in children. Dr. Rosenthal, a world class doctor who may the very best in his field, admitted her didn’t know much or understand post anesthesia fevers in children and asked the resident if he knew more (apparently the resident has done some research on the subject). But he didn’t really have answers, just statistics.
It was great to get out of there! Hana was so bored and going stir crazy to leave (last night she started crying when we went into the empty hospital room and realized we were staying overnight in the hospital). Since Hana was seen by the team during rounds we do not have to go to her clinic appointment tomorrow! It was also nice to discuss some of her care with the full team. They made some medication adjustments, adding Bactrim (trimethoprim/sulfamethoxazole, which is the longest drug name I might need to remember) and eliminating Iron! Bactrim is an antibiotic that Hana needs to be on while on the steroid prednisolone for a prolonged time. It replaces pentamidine, which she got once in the hospital and to which she had an allergic reaction. I was also able to discuss weaning Hana from her tube feeds! This is music to my ears! They finally think it is time to try! I am so excited!
In other fun news, on Tuesday we went to the beach and met my friend Alyx and her son Aidan. It was great fun! Hana loved it!