Happy To Be Home

This update is long overdue, so I apologize. We have been so busy and exhausted! In between organizing and unpacking, we are still going to appointments down in Palo Alto, picking up meds, walking Poppy and trying to enjoy our freedoms. But there are lots of good things to update to share!

First, Hana had a birthday and turned two a week after we moved back home. She had a good day and I took her to the open gym session at the gymnastics place where she could climb and jump (after that much of the day was spent preparing for her birthday party the next day). We got an ice cream cake and she actually ate some. The day after, Saturday, we had a birthday party for her on the beach in San Francisco. We invited some of her friends that came to visit her in the hospital. She was VERY excited and had a really great time. I don’t think she understood it was her birthday but she loved being by the ocean and having lots of other little kids around. A bunch of our friends pooled together and bought Hana a toy kitchen. This was always her favorite thing to play with wherever she went (preschool, hospital playroom, hospital gym, RMH playrooms). So, when she got back from her birthday party on the beach her play kitchen was all setup and waiting for her. She LOVED it. It was a great day in the life of Hana!

Second, another of Hana’s nurses at the hospital won the Daisy Award for her care of Hana! Jenny made wraps for Hana’s Berlin Heart dressing which we used instead of the ace wrap. It was better for Hana’s skin, did a better job keeping things in place, was more convenient and more comfortable. Jenny shopped for fabric, made a bunch of prototypes, and sewed a bunch of wraps for Hana in her free time. I was incredibly touched by her dedication and generosity. I think it was very rewarding for Jenny as well. Hana and I made a special trip down to the hospital so that we could be there when they surprised Jenny with the award. It was really great to be a part of it. We really had so many great nurses in the hospital and I am very grateful to them.

Third, Hana had another Cath Lab/Biopsy last week. Last time, she spiked a fever and had very rapid breathing and ended up in the Emergency Room and then was admitted overnight at the hospital. This did not happen this time. Hana’s anesthesia took a long time to wear off and she was kind of like a happy drunk for several hours. She would get up and stagger across the room and then fall on her butt and then laugh at herself. It was pretty funny but I could not take my eyes off of her so that she didn’t hurt herself! She eventually became very irritable. The good news is that the pressures in her heart are WAY down, so much that they thought maybe she was getting too dehydrated (but her BUN and creatinine look normal). She also got another zero rejection back from her heart biopsy! So this is all great news. The only bad news is that two of the vials of her blood for testing clotted so we couldn’t get comprehensive blood work that week (and Kaiser messed up and didn’t have the lab orders in their system for us to make it up a couple days later).

Fourth, Hana’s clinic visits have been going well. She is doing great. They continue to wean her steroid but go up on her blood pressure meds, as her blood pressure remains too high. As standard protocol, they started her on Lipitor as a prevention against coronary artery disease which is the most common reason that someone needs another transplant. We keep dropping her tube feeds and last Friday they decided to drop the last feed, which she was getting at night while she was sleeping. So, her NG tube would only be used for giving her meds and the plan was to slowly introduce more and more of her meds by mouth instead of through the tube. Well, last night (Sunday night or early Monday morning) she somehow accidentally pulled her own NG tube out! We decided to leave it out and just cold turkey see how she would do on taking every single one of her meds by mouth. She gets 14 medications and most of them she gets twice or three times a day. It was a struggle and we had to hold her down for a few but she managed to get all but one medication down (and that one was just Lasix which she immediately spit all of it out). We ended up redosing. In the evening Hana did MUCH better and only really struggled for one medication. She drank and ate more than I have seen her do. I wanted to cry tears of joy! I was so proud of her. We did a lot of celebrating when she finished that last medication! Hopefully, she can keep up the good work on the medications and eating and drinking and the NG tube can stay out for good!

Lastly, I wanted to mention two things that don’t qualify as good news. First, it has been a bit of an adjustment for me to being out and about in the real world, full time. In general (friends and family excluded, of course) people are not nearly as nice as they were in the hospital or the Ronald McDonald House. Of course, this sounds pretty obvious but when you have become so accustomed to it for nine months, its a little surprising. Many of the same challenges still exist yet no one is trying to help you or accommodate you. Not that I expect special treatment, but actually, I guess I do for some things. Sometimes special treatment is appropriate and people at the Ronald McDonald House and the hospital understood that. Stress, fatigue, worry, heartache, etc. is what you deal with every day and besides that a million details to track. I find myself getting frustrated trying to get the many small things done regarding Hana’s care. So, I really appreciate those people that are trying to smooth the road for us.

The last thing I’ll mention is that Sunday morning my grandmother passed away. She was 97 and had been in relatively good health, but lately she had begun to experience some heart problems. She died peacefully and full of love. While she was not perfect, she was an amazing grandmother and such a force of love in my life. She saw a lot in her 97 years but I think all of this that happened with Hana really shook her up and maybe there was a ripple in her resiliency. The day we got the shock of our lives when we learned of Hana’s heart condition was also my grandmother’s 96th birthday. I thought of her often when I needed to find more energy and strength to keep going. She used to tell me stories about her neighborhood growing up in South Philadelphia and how people took care of each other. I’ve thought of that picture she painted often, letting others into our lives to help take care of us. I’m glad she got to spend time with Hana (before we knew about Hana’s heart) and I’m grateful she waited until Hana got her heart to conclude her time on this earth. I will miss her terribly.

Thank you for taking care us!

Welcome Home Hana!

We are home! It is amazing in so many ways. It feels great and Hana seems very happy. What’s best is that we are finally all together again under one roof because now we have our dog Poppy too!

I’ve been packing like crazy and a friend of a friend picked some stuff up yesterday. Then today our friend Lisa showed up and helped us pack and load up the rest. Paul took the day off from work (sort of, he still did work). Some friends in our neighborhood came to the house and did one last cleaning! When we pulled up to our newly painted house (scaffolding is all gone!) there was a “Welcome Home Hana” sign and balloons!

Some of our friends showed up with champagne and we celebrated and did a little unpacking. Neighbors came by with dinner and dessert! Paul and I got a few crucial things unpacked (medications and medical supplies). We had dinner and then started the bedtime routine. Hana was very excited but did manage to get to sleep in her own room and in her real bed! 

It was sad to leave the Ronald McDonald House today after 60 nights there. We have made a lot of friends there and in the hospital. There are kids we’ve seen go through a lot and it feels a little strange to now exit that world, a world where having a child with a serious medical condition is normal, and just go back home.

We still have a lot to do, unpacking from 267 days away (nearly nine months), but we are so happy and in awe to be home!

Time To Move Home!

Today we got the okay to move back home! We are SOOOO excited!!!

Now we just have to figure out logistics. Paul isn’t able to come to the RMH until late Thursday or Friday morning and he still has to work, either way. So, we are hanging out until we have a way to pack all our stuff and take it HOME! It may be Friday night or Saturday. 

In the meantime I’m packing what I can at RMH and following some tips on recovering our stolen bike wheel. 

Home Sweet Home is so close!

No Word Yet

Things have been really good. Hana is making progress in her feeding therapy – we’ve dropped another feed and she continues to eat and drink more. Her Prograf levels are within the goal range (finally!). She is happy and we are making it out for trips. Unfortunately, the team at Stanford has decided that Hana is not allowed to be at home full time yet, they want her drug levels (Prograf) to be stable. We are not taking Hana to get more blood work until next week, because this week was stable they will make no changes. So, the soonest they would get another drug level would be next week with her blood work so it seems the soonest we would be allowed to take her home permanently would be next week.

I am so disappointed with this, but trying to just move on.

Things at the house are coming along. Unfortunately, our garage was burglarized. It seems when you are having your house painted (which we are, we need to get it done before Hana can be at home permanently) and there is scaffolding up it is like posting a big “Welcome!” sign for thieves. It is hard to say what was taken because I don’t know what was where anymore but for sure a PlayStation and the painter’s tools were all stolen. But the house is looking great and everything with the paint job should be done this week.

Another unfortunate incident is that our bike at the Ronald McDonald House was vandalized. As far as I can tell only the front wheel was stolen. It is almost a guarantee that someone at the Ronald McDonald House is the one who vandalized the bike, because the area is only accessible to residents. I also think I know who did it and the kid from the family has since gone back home. This is hard for me to swallow.

But again, we are trying to move on.

Things inside our house are slowly getting done. Things are getting organized and cleaned, bit by bit. It kind of feels like we are just stuck in between moving – we can’t really move out or move in to any place. I get very sad when it is time to pack up for the night and go back to the RMH. I especially hate leaving Poppy. Hana seems to really enjoy having Poppy around and I just can’t wait for our family to be a complete unit again!

We’ve been trying to have a lot of fun with Hana. She still has to endure days where we get chores or errands done and certainly where we spend most of the day at the hospital for appointments. In between we try to go to the playground, pool or the beach. We had a great time over the weekend taking the Roaring Camp train from Felton to the Santa Cruz boardwalk. We had Hana wear her mask the whole time (with a few breaks when we could be away from people) and I was constantly wiping off her hands, but it was great fun!

Tomorrow (Wednesday) Hana has another clinic visit. I’m going to advocate again for them to let us move home, but I’m feeling kind of defeated. Still, we are very grateful and loving life outside the hospital!