Yesterday marked six months since Hana’s heart transplant! This milestone means some good changes like less often clinic appointments, less medications (slowly we should wean more off the steroid which means she can drop several other medications when she’s off the steroid) and travel restrictions are lifted (except no airplane travel during flu season). It also means that somewhere out there a family is six-months into the mourning of their little one, which I imagine is even harder during the holiday season. They are never far from my thoughts. We are so incredibly grateful to them for the obvious reasons but especially because this holiday season we get to spend it with Hana at home. It was around this time last year that Hana was admitted to the hospital with a collapsed lung. She spent the week before Thanksgiving all the way until Christmas Eve in the CVICU and most of that time she was intubated and sedated.
This Thanksgiving was GREAT! It was really wonderful to be out of the hospital, have a real dinner and celebrate being THANKFUL! We spent it at home with a good number of friends. Hana did not eat much, which has been a problem over the last month.
Hana has lost 1.5 pounds over a month. She eats, but not enough. At her last clinic visit her weight held steady but overall she has lost more than they’d like. It sounds like if she doesn’t start gaining very soon she may need to get the feeding tube again. This has all been stressful for me and we spend a lot of time eating or trying to eat. One thing I did after her last clinic appointment was I stopped giving her milk for almost two days. She ate significantly more! I’ve tried this before but after an hour of no eating I would give her milk out of desperation. This time I managed to get her to eat scrambled eggs with lots of chopped pickles and cheese and it set the day off right (too bad this doesn’t work every time). We will know on Wednesday at her clinic visit if she’s gained weight. It’s stressful! As any parent who has had a problem eater (versus a picky eater), failure to thrive or had a feeding tube for their young child, eating issues are almost always very stressful.
Speaking of stress, I think I have not posted recently about the stress of Hana’s weight loss because I’ve been thinking about our friend Zack from the Ronald McDonald House. I couldn’t bring myself to write about weight loss when Zack was fighting for his life. Zack had a double lung transplant and it has not gone well. After his transplant he got really sick and they removed part of his lung. Then he suddenly got very sick and they removed the rest of the lung. Since then he has been on ECMO, which is life support that oxygenates his blood so his remaining lung doesn’t have to. He has been relisted for another lung transplant and will remain on ECMO until that happens. The problem is the wait for lungs is usually long and the time a patient can stay on ECMO is short. So please pray or send positive thoughts for our friend Zack. If you feel moved to do so you can send an e-card to Zachary Hepburn at the hospital: http://forms.stanfordchildrens.org/forPatientsVisitors/cards/index.jsp
We are living life and getting out and about! I feel like I am always on the go. Between appointments, blood draws and pharmacy visits I am trying to get Hana out doing as many things as possible that she missed, as long as she enjoys them. She is the age where she seems to enjoy a good number of things. I do have to push and encourage a bit more independence as she is very used to having me by her side almost every minute of the day. She still likes to be carried everywhere! But overall she is doing great!
Lastly, I’d say that we are trying to keep Hana healthy. This has been challenging now that it’s flu season. Every cough or sneeze I hear around me sets off an alarm. Bad sounding coughs cause some stress. I’ve stopped taking her to the grocery store with me, even with her mask on, and I try to avoid taking her to places like the pharmacy where there seems to be lots of sick people. We do still go to public places but only when they are not crowded and we don’t eat out in public unless we are outside. Even then, if someone coughs or sneezes next to Hana outside I am still in stress mode. It’s hard to balance keeping her isolated and minimizing risk of being around others. Other than some off and on diarrhea (and that could be from medicine), Hana has had no symptoms of being sick. Of course, we do a lot of hand washing and hand sanitizing.
We are very excited to spend this Christmas season at home! We just have to stay healthy!