Friday, September 16, 2016
Day +42: A sea of support...
It is obviously difficult being away from home...away from family, friends, familiar nurses/doctors and surroundings, etc. However, Seattle has welcomed us with open arms, at the same time that Texas has continued to support us from afar. Yesterday especially, there was so much evidence of that.
It was a difficult day. He had to go down to have his line removed because he has 3 different bacteria growing in his blood. While he was under they put in 3 separate peripheral ivs in. Once he got out of recovery, one of them had already blown. A few hours later a second iv failed, so he had to have yet another one placed, awake this time. He also continues to have an anc of zero. That means no immune system. His CMV virus is also active. He is on 3 iv antibiotics, an iv anti-fungal, an anti-viral, and steroids, plus tacrolimus, and multiple iv medications and fluids. Many of these drugs are harsh on the veins and some on his organs. His puffiness also increased and he was up more than 2 pounds overnight.
There were several things that blew me away yesterday in a positive way too though.
First, his night nurse, left me this encouraging note on Rowan's morning labs.
When I came back up to the room after speaking to the surgeon, who told me that they were indeed able to successfully pull his line and place the 3 peripherals, the nurse let me know that someone had delivered me Chic-fil-a and that she had put it in my fridge.
Less than an hour later, the Chief Nursing Officer for Seattle Children's, came by to personally deliver me a fresh lunch that she had ordered for me. She had come to check on me the day before as well.
The reason that the Chief Nursing Officer even knew about Rowan and I was that the Chief Executive Officer of Methodist Children's Hospital (back home), had phoned ahead many weeks ago to ensure that we were well cared for here. Who does that? What hospital makes personal calls and emails to make certain that their patients have the best possible transition to a new facility, over 2000 miles away. Well obviously, Methodist Children's Hospital in San Antonio and Seattle Children's Hospital do.
Next, I received a personal email from the first specialist that we started seeing here in Seattle 2 years ago. She was in town for a conference and reached out to try to come visit Rowan and I in our room, all the way from Boston. Unfortunately, Rowan was taken down to surgery early so it didn't work out today, but just knowing that she still thought of us, and still cared...blew me away.
Then I got a package from Brian that cheered me up. He knows how much I love Hatch Chile Fest at Central Market every year, and all the yummy Hatch Chile Pepper products in all the stores. So, he sent me some Hatch Green Chile pita chips, Hatch Queso, etc. Such a thoughtful gesture.
And look at this second amazing poster one of the cnas drew for Rowan, and had some of the nurses write notes to Rowan. It is precious! And so perfect for Rowan.
Finally, and this is where it gets weird (and I need some of your help)...The first cna that I saw once I was back on the floor after Rowan's surgery, was wearing one of his light blue, "Rally for Rowan" t-shirts. She said "Thank you so much, I love these!"
I looked at her bewildered. I was stunned. The light blue version of her shirt had not been sold for quite a while. How did she suddenly get one? Did she know about Rowan before he got here? And then (and I'm not even kidding you), I seriously thought to myself: "Did she go make Rowan's bed up while he was down in surgery and just took one of my Rally for Rowan shirts?" It was so bizarre! Then, as I walked down the hall...nurse after nurse, and all the cnas, had on Rally for Rowan shirts.
My mind was blown. I cried. Then I went to our room and cried some more. Our nurse for the day said "yes, I believe it was your sister's friend that dropped them off for us. I put them all in the break room, and everyone is grabbing them." I knew that didn't sound right, so I asked, "Do you think maybe they said it was a sister of a friend of mine?" That theory hasn't panned out yet either though. Everyone is baffled! I cannot for the life of me think of who in the world was nicest enough, kind enough, generous enough to buy these shirts and donate them to the people who are caring so closely for Rowan right now. And the funny thing is, he has been on 1 floor, in 1 room the whole time, but nurses and therapists were getting word of the shirts and coming from the floor below us to come grab a shirt as well. So I must ask you all: "Who did this amazing thing?" Who brought me Chick-fil-a today? Who donated dozens of shirts in order for my son to feel surrounded by familiar love while he fights this tremendous battle? Please let me thank you! Please reveal yourself, and let me know how you came to follow Rowan.
Even more important, is the quote on the back of this particular shirt. It is another popular Rowan-ism, but it is so poignant as well. "If you can't see the good, make the good!'