Climbing

This post is long overdue. I’ve been wanting to post about something really special that happened last week, but I’m waiting on something, so I’ll just leave you in anticipation. In the meantime, I thought I’d better send out an update.

It’s been a busy couple of weeks. My sister and brother-in-law were here the first week of May and we had a really great visit, which included the excitement of the News Media Event. I’ll post more links as they become available. We’ve gotten some nice feedback so I’m really glad we decided to do it and I really hope it helps raise awareness on the importance of organ donation.

Hana also had another IVIG treatment on Monday and Tuesday of their visit. They had to poke her four times to get their blood draw and to get the IV started. It was awful and I hated seeing the fear in Hana’s eyes, it really hit me hard this time around. They ended up putting the IV in her foot and then another, better IV in the other foot. So, Hana was not able to walk or stand for 24 hours, or even leave the room which was HARD. Thankfully, their were three adults, full-time, to keep her occupied!
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Getting silly during IVIG

We already got the results of her IVIG therapy and she dropped another antibody (If I’m even saying that correctly). So now she is down to 2, which I guess mathematically means she would not be able to accept an organ from 22% of the population because of her antibodies.

Weekends here are generally slow and boring. The nurses are staffed short so they are usually a little too busy to take Hana outside, maybe she can go out once a day. Strangely, we get most of our visitors during the week too so it makes for long days on Saturday and Sunday. It is nice to get visitors to break that up! Sunday (Mother’s Day, we will double celebrate next year when Hana is not in the hospital) and Monday felt like really, really long days. Then on Tuesday we started to get visitors all the way through Saturday.

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A little bored!

Thank you to everyone who visits, it really makes a difference!

Hana continues to go to the music concerts on the adult side of the hospital. It has been really great. She has started to squeal with delight when she realizes that we are walking in that direction. Her favorite performer is still Jeff, the guitarist that plays at preschool on Wednesdays. Sometimes we see him at the concerts in the audience and Hana will stare at him like he’s a rock star.

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Staring at Jeff the guitarist.

One of Hana’s nurses has taken it upon herself to make cloth wraps with velcro to use over Hana’s abdominal dressing. This is to replace the ace wrap that we’ve been using. We are experimenting with what she’s made so far and she is perfecting her pattern based off of our experiences. I am so grateful and honored that she is taking so much time and energy out of her personal life to do this. They have been working out great! Jenny is amazing!

May 11, 2016
Replacing the Ace Wrap!

The big news of the week (other than the special announcement that will come in another post) is just that Hana has been climbing everything. She is climbing up her crib, on chairs and stools and on top of the table and on the stuffed chair and couches and up the slide. It was inevitable. I’m glad she is climbing but I can’t turn my back on her for a second! Because of all the blood thinners Hana is on it is really dangerous if she fell, not to mention her pump that goes into her heart! But it is really fun to see her go at it, I fully support it as long as we can keep her safe and she doesn’t irritate the cannula insertion site into her chest.

May 9, 2016

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I also learned how to give Hana her Lovenox shot, which is just a subcutaneous injection, so its not a big deal. I want to be able to give it if the nurse is really busy, especially at night and I want to get Hana to bed.

The waiting has been getting to me a little bit. It takes vigilance on my part to continuously adjust my attitude about it. We are stuck here and we are waiting for a heart, but it doesn’t mean we can enjoy every day and every minute, not that I don’t, but I don’t need to be getting down because we’ve been waiting for five months. That’s right! Hana has been on the transplant list for five months, as of today.

Here are a few more pictures of some activity!

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Cinco de Mayo celebration

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Watching the ants go marching one by one.

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178 days in the hospital, 160 days post-Berlin Heart, 152 days on the transplant list.

7 thoughts on “Climbing

  1. Boy I can relate to getting stuck more than once! I cant imagine a baby having to get stuck 4 times! The waiting has got to be frustrating, understandable. Hang in there!

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  2. Kathleen and Paul,
    You have no idea no idea how many people you have never met are quietly following Hana’s journey and lifting you up in love and prayer. All of you are just amazing!

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    1. I have no idea how many are either. I’d venture to say at the very least hundreds, but I would also not be surprised if it were in the thousands either. Whatever the number is.. our family appreciates every one of you!

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  3. I am praying my heart out for all of you. I know God’s listening to us. You are so patient. He will answer soon, I’m sure!

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  4. You don’t know me either but I have been praying for your family since January. I certainly pray for a heart, but I also pray for the grace for you to endure this trial; you’ve been amazing so far. You seem blessed with great family and friends – what a gift!

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  5. Hi! I just found your blog through the LPCH website and have read all about your incredible journey. If you’d like a play date next week, we’d love to meet you and brighten your day a little bit with some toddler babble. My son, Arlo, is 13 months and is an outpatient in the cardiology department of LPCH. We’ll be at the hospital for a visit on Monday. Please send me an email if this may work for you: lisambritz@gmail. com
    Love to the beautiful Hana and your family also!

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