Wednesday, June 1, 2016


Children's Hospital stole my heart long time ago. I know it sounds weird. How can you love a hospital?! Being in the middle of a long challenging hospital stay, there is nothing I want to do more than bringing my boy home again. I do not want to sleep on this hard tiny couch with alarms beeping one more night, and deal with nurses and respiratory therapists throughout the night. What makes it bearable here are the people. They are the heart of this hospital. It's not just the doctors and nurses. It's everyone from the volunteer greeting you at the entrance to the person coming by asking if we have any empty trays. As Sarah and I had picked up some food in the cafeteria this evening, a dad I have worked with for years gave me a big bear hug as he was heading out with his son. We caught up on life, and we both know why we give our free time to this place. Encounters like this make the day a little better in the middle of worries, stress and hardships.

Today, Sarah started her own relationship with Children's. This spring, she found out you can start volunteering at age 13. Sarah immediately jumped on this, and together with two of her close friends, they went through the rigorous recruitment process to become volunteers at Children's. They filled out applications, got background checked, collected their own references, got their blood drawn, and attended the volunteer training. Having a teenager, there are many things I have to prompt and remind Sarah to do. This particular project, she owned completely from start to finish.

Today, Sarah did her first shift as a volunteer. She figured out what she could wear. She emailed the scheduler to confirm her hours, and then I dropped her off at the volunteer office.

Sarah was pumped when she was done. She got to give out the daily volunteer flyers. She had passed Jacob's room, but since he is in isolation, he didn't get a flyer. She got to help out with children in the speech and audiology department who were here for speech evaluations. She felt a little overwhelmed after taking multiple kids to the bathroom, but figured it out in the end. She ended the day in the creative play area (daycare for siblings). She helped with a little toddler who didn't want to leave her side, and decided to lick her whole volunteer badge! She wanted to sanitize it right away when she came to see Jacob, so she wouldn't spread any germs. This girl has been in the hospital a few rounds...

I know life with Jacob isn't always easy for her. She has spent numerous weekends and holidays here. She navigates a hospital room like a seasoned nurse. She knows where the kitchen is and what food she can find in the fridge. She knows the whole coffee menu, and everyone's coffee order in the family. She knows the gift shop and cafeteria a little too well. No need to look on the menu for what she wants to order. Many of Jacob's doctors and nurses know Sarah, and love when she comes to visit her brother.

I was so proud of my Sarah today. She started her own relationship with Children's. She isn't just Jacob's sister, she is Sarah

The girls at the annual volunteer dinner.

And a little Jacob update: Jacob is back on room air today, which is a big step in the right direction. No more bipap or oxygen during the day. Jacob finally started to pee on his own after having had a foley in since we came. He still needs diuretics to help him pee. Jacob was a little more sleepy today again, and he is not yet feeling completely himself. We still haven't discussed discharge, but hoping Jacob will continue to slowly improve. I'm ok to go slow as long as we continue to move in the right direction.

Thanks again for all the love, support, visits, messages, coffee & meals. It fills our hearts.

Love from the 9th floor, Maria.

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