A Bittersweet Homecoming 

After a little bit of drama Hana was discharged and we got home early this afternoon (Saturday). The drama involves the lab at Stanford and the Kaiser pharmacy (unrelated dramas). We’ve been waiting on the second negative adenovirus PCR to be cleared to stop the Cidofovir treatments and go home. Everything else with Hana’s condition was resolving or resolved. The resident was working hard to get all our discharge stuff ready so we could go sometime on Friday. She was also working with the lab to get that last test result. We were all hoping it would be negative, of course, and they agreed to hold off one day on her scheduled Cidofovir infusion to get the result so she didn’t get an unnecessary treatment.

The lab promised a result by the end of the day Friday. After repeated calls nothing had come by 5pm and the answer we got was that whoever ran the test didn’t use enough blood from the vial that was sent and therefore they couldn’t get a result. They didn’t need more blood, they just needed to run it again and since it was already Friday end of day it would have to wait until Monday. This was obviously not okay with a number of people as it would mean at least two more possibly unnecessary days in the hospital and the risky Cidofovir treatment all because someone made a mistake in the lab. It took the attending physician to make some calls to ensure someone stayed late and ran the test again. The result came in some time after midnight – another negative!

The other drama with the Kaiser pharmacy was less severe. The resident talked with someone at the Kaiser pharmacy to ensure we would be able to get three medications we needed upon discharge. Two of them were just medications that had expired over the four weeks in the hospital. The person at the pharmacy said they would be ready. The pharmacy called to tell me they would be ready that afternoon. They called Paul when they were ready to be picked up. Paul went Friday night to pick them up and they only had one ready. He was told to go to a different pharmacy to pick up the others the next day. Today our friend went to pick up the prescriptions while I packed up the room. They didn’t have what they needed to fill either prescription and gave her a hard time saying we should have picked them up yesterday (why? If they don’t have them and can’t fill them). I hate having to come up with threats and ultimatums but it had come to this. In the end they begrudgingly called around and found out Kaiser in San Francisco could fill them. We shall see if that happens.

Now we are home! We ended up having way too much stuff at the hospital that we now have to unpack! Hana was cranky about leaving because I think she knew things were changing and she didn’t quite understand what “going home” was going to mean. Once we got in the car she was pretty happy and once we got home she got right to work playing with her toys and discovering the Christmas presents that she had been too sick to enjoy (she still has a few to unwrap!). She is running around the house and talking up a storm. I’m exhausted, way more than I thought, and it’s going to take at least a few days to get things settled. But we are HOME and it’s amazing. Thank you to everyone who helped keep us fed, sent cards and gifts! It’s helped tremendously.

I call this homecoming bittersweet because across the country, from the hospital where I was born, my grandfather is also being discharged into hospice care at home. After a traumatic car accident eight years ago where a man was trying to kill himself by running a red light at 70mph and hit my grandfather’s car, my grandfather has battled lots of very painful and complex medical conditions. In the last week, some new problems emerged that have caused a lot of pain and their treatment interfere with  the maintenance of other conditions. It’s very hard for me to digest all of this while being exhausted and dealing with Hana’s own hospitalization. It’s also really hard to be so far away especially when we’ve been unable to visit our families back east for two years. It feels really hard.


4 thoughts on “ A Bittersweet Homecoming 

  1. Bless you. I’m so thrilled that Hana is back home and I can honestly say she looks well too.

    My heart is with you at the illness of your grandfather. I’m sure he would tell you that knowing little Hana is better and home is all he could ask for.

    May God bless and comfort all of you.

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  2. So very glad you are home. God Bless you all. Keeping you all in my prayers as always. There are many folks here in Mass that are keeping track of Hana and have been praying along with me for some time.

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  3. Thank you for sharing your story. My grandson was admitted to Lucille Packard on January 14, 2017. He was less than 24 hours old. He received a Berlin Heart at just 17 days old and is currently in CVICU. He is also waiting for a heart transplant. As of today he is thriving with the Berlin Heart, but we know that could change in an instant. I will keep Hana in my prayers.

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