We arrived safely in California on Sunday. We got to Logan Airport with enough time to have lunch at the Chase Sapphire Lounge. It was a pretty uneventful but long flight. We flew over Colorado and were excited to see snow (ski season is coming, and it is something to push forward for!). The flight into SFO was beautiful, with the setting sun. We flew over Palo Alto and that was kind of exciting.
Reya is a great travel buddy. She watched movies, I worked. When we arrived, late at night Eastern Time, we had to trek through SFO, find our luggage and navigate to the rental car. She did all this with little complaints, though we did have to stop a bunch to help her catch her breath, a reminder of why we are here. We did eventually find a SmartCart and that helped a lot.
The rental car company had a contactless check-in, all on our phone, that we had to figure out, and then we were on our way. We arrived at the Ronald McDonald house around 7:30 PST. We unpacked before climbing in bed.
Our bodies woke us up good and early at 4:00 AM, so we were off to the grocery store (open 24 hours!) by 5:30 and back in time for Reya to log on to tutoring. After that, Monday was spent exploring. We drove to Half Moon Bay to see the Pacific Ocean. We watched some seals body surf the giant waves, walked through a grove of Giant Cypress Trees, had lunch by the ocean, and checked out several different beaches. We hightailed it back her in time for her appointments at 3:00. The Ronald McDonald House is a 10 min walk from the hospital, so we walked over.
A new heart mom friend I've made out here has been giving me pointers and based on her tips, we decided to drive over in the morning. I was wowed by the parking garage! Anyone who has ever navigated the BCH Longwood Parking lot would have been wowed. The parking lot was spacious, bright, and not crowded at all. Tons of parking spaces. And it was free with validation! Not even our local hospital at home has free parking. We took the elevator up and went over to the procedure center, where you go to prep for all procedures. We were taken back quickly and then the ball started rolling. They told me the cath would start at 8:30, and they rolled her out of there at 8:30 on the dot. They told me she would finish around 11 and I got the notification to come back to meet with the Dr at exactly 11. While she was in the cath lab, I went out for a run and had enough time to shower before heading back to the hospital.
On my run, I found my way over to the Stanford University Campus. What a beautiful campus. Reya said to me the other day, "Maybe someday I will come here for college". I wouldn't mind that, knowing she'd be close to a hospital that understands her and where she has established care.
Dr Lynn Peng did her cath. She is one of their big cath Drs here and does all of the imaging for their top surgeons. I loved her. She trained in Boston under Jim Locke, who was Reya's original cath Dr. He was a bit of a piece of work but a brillant cath doctor. She may have gotten her skills from him, but she definitely had a better bedside manner. She was really reassuring, telling me how amazing our surgeon is and also when I asked if we had made a mistake waiting this long to come, she said not at all. She explained that what they are doing now they were not doing 10 years ago when Reya was born, and it takes time for the word to get out that this highly specialized surgery is happening. She also said big centers (BCH) do not often refer to other big centers (Stanford). She Boston was treating her the best way they possibly could. She said what mattered was that we were here now. She also said our team had doing a beautiful job rehabbing what they could in the cath lab, but the vessels that need work are just too far out. She felt optimistic that we would be able to relieve the pressures and give Reya a better life.
I was finally taken back to see her around 11:45. She was high as a kite. I was a little disappointed that the anesthesiologist did not follow the protocol that our team does, when we know that works well for her. She came out yelling and sort of angry, but also not making sense. Her eyes were all unfocused and she was so out of it. At one point she told me I had 4 eyes and so did the nurse. But he was able to do the cath without intubating her, so that was fantastic. When I got to her bedside she was not on oxygen at all, however as she started to come off the drugs she screamed for oxygen and made us put it on her. We were able to convince her she didn't need it a few hours later and the team told us if she looked good, they would let her go later that afternoon. And sure enough she did! We walked out of the hospital at 5:30 and were back to the Ronald McDonald House in time for dinner and BINGO! It was so nice to get to sleep in a real bed instead of the hospital!
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We were able to do our surgical pre-op while we were inpatient for the cath. Dr Bishnoi's PA, Gio, came in to talk to me and explain exactly what the surgeon hoped to accomplish. She was kind and soft spoken and clearly admired Dr Bishnoi - this is the impression I've gotten from everyone. She assured me he was very thorough and that it would be a long surgery. Reya will go back at 7:30 and we likely won't see her again before 9 PM but it could even be after midnight. We won't meet Dr Bishnoi until after they take her back. They are hoping to recruit and redirect some of her "ghost vessels" (these are tiny vessels she has lost over the year). It sounds like they will be able to increase flow and reduce pressures to everywhere but the upper right lung, which has always been a weak spot in her anatomy. The vessels that go out there are so tiny. But she did say he would take a look at it and see if there was anything they could do. She did warn me that there was a good chance that Reya would be left open, and warned me, very carefully, of all of the much scarier things that could happen.
We spent yesterday doing some more exploring. Reya had tutoring first thing and then we got in the car and drove to Henry Cowell State Park to see some old growth redwood trees. From there we went to Santa Cruz to see a different beach. I wanted to check out Natural Bridges State Park to see the tide pools, the monarch butterflies, the the natural bridge. It was extremely crowded due to the holiday, and there was too big of a crowd in the butterfly grove, but we still had fun. We did not have much time left after that to actually check out Santa Cruz, but we did drive through. It was a little crazy for me and we're in the off-season!
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Sea Anenome
The weather has been gorgeous and it has been so nice to be outside so much! Yesterday could've been a perfect beach day, but Reya could not go in the water due to her cath site.
Today we are going in to San Fransisco. We are looking to ride a Cable Car, see the Golden Gate Bridge, and eat a giant ice cream sundae for lunch at Ghirradelli Square. Then we will head back to SFO to retrieve Chris just in time for surgery.
We are all holding up well. We have been so busy, our minds are pretty occupied. This was a much easier week than last week when I was busy but busy with mundane things, so I kept finding my mind wandering. We have had a lot of time to have fun! Both Reya and I are having a hard time believing we are in California, but also having fun noticing all the differences here. It feels like we are in another country. Hope seems to be hanging in there too - all of the packages she has received have been a huge (and fun) distraction. She has put many of them aside to save them for when she needs a pick-me-up, which I thought was really sweet. We really appreciate how much love you have all showed her and Reya - thank you! Reya has been just giddy by the items she has received. I have been tweaking the lists and updating them. And as I said in my last post, Reya is really hoping for balloons on the other side, but that might have to wait until she is out of the ICU.
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Here are links. Please don't feel like you need to send something, they have enough already, but it makes them happy and is a great distraction. For Reya, I put a few things that she can craft and perhaps give out to nurses or other friends she meets along the way (especially the diamond crafts). I also put a few stuffed seals since they were something we saw in our adventures.
For those who want to send cards, the address at the Ronald McDonald House is:
Mireya Crellin
520 Sand Hill Rd
Rm 1307
Palo Alto, CA 094304
When I have a better sense of what can be sent to the hospital, I will also provide that information.
In less than 48 hours, we will be on the other side. The recovery will be long and hard, but we are up to that task. I find myself excited and scared at the same time. When I can focus on outcomes, I am excited, but sometimes that is impossible and your mind wanders to the dark side, and then I am scared. I will try to find some time on Friday to write, but I am not sure I will have the headspace to do it, but I will post short updates on social media. And I will do my best to post a full update by Saturday night.
Thanks everyone for all of your messages of love and support. It takes a village and we know we couldn't do it without ours.
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