IVIG

Last night was rough with Hana waking up around 2am with a shout. She shouted, giggled and thrashed. She also arched her back, rolled and pulled herself up to standing in her hospital crib. She set off the Berlin Heart alarm. This went on until about 7am. Some time around 6am Paul took over and I got a little sleep. Later in the morning when I was in the bathroom getting dressed I was feeling miserable and cranky. Then I reminded myself that this wouldn’t last forever. Maybe I would only get 3-4 hours of sleep a night for several months or a year but it wouldn’t always be like this. Sure, I was very tired but it was me not letting go of my expectation of getting more sleep than I actually got that was making me miserable. Then I actually felt more energetic and felt pretty good all day (but admittedly, a little tired). I would welcome more sleep but in the meantime it is amazing how our attitude and choices can make a difference.

Hana had PT/OT again and then a lot of bloodwork. They also decided to start IVIG therapy today. Hana’s immune system is way too strong which is not a great thing when you are hoping to get a donor heart that your body won’t reject. As it is, they would only be able to accept donation offers on roughly 20-40% of the available hearts. So, in order for her body to be able to accept a larger range of matching donor hearts they decided to start IVIG therapy to lower specific antibodies. This means she is getting a special IV drip, specially concocted for her, over the next 18 hours. They have to monitor her closely because some patients have adverse reactions. This means she will be limited to her room until the treatment is done. We did, however, get to go to the day room by ourselves (without a nurse) for about 20 minutes before her treatment started. She certainly loved playing in a different space!

It has been a very busy day and I’m quite tired, so that’s all for now but I do have something very, very exciting and special for Hana to share tomorrow! 

   
  
Day 50 in the hospital, Day 32 post-Berlin Heart, Day 23 on the transplant list.

 

Training

Hana had her best day yet today. We had a rough day with vomiting and a few rough nights where Hana was up for hours in the night acting like it was playtime. Last night she finally slept and today she seemed much like her usual self! She went to PT/OT and did great. Then she went to pre-school. Then she had a nice long nap and after that we went to see the trains again and then parked in an alcove where we brought out a bunch of her toys. They decided that she can not go to the Playroom in the afternoons during the respiratory season because there is too much risk of her getting sick. They are keeping her on continuous feeds of breast milk, no fortification with formula for a while to see if she stops vomiting so much. She did vomit once today after her particularly hard to handle medication – persantine (which prevents her from getting her omeprazole for her stomach, since it is contraindicated). She has been a busy girl and it is hard to keep her contained to her Berlin Heart tether. She is up and walking a bit, still a little unsteady on her feet but she is really starting to move!

Today Paul, my mom and I had the first part of our training on the Berlin Heart. This was mostly basic operation, our limits, procedures so that we can leave Hana’s room without a nurse! We are still confined to the unit, which isn’t big, but it does include the day room/kitchen which is where they hold preschool in the mornings. So, starting tomorrow afternoon we can take Hana to preschool by ourselves and hang out in Day Room all we want! We are very excited to have this freedom!Hana-3265_web

Hana-3270_web

Hana-3289_web

img_9043
Checking out the camera

Hana-3299_web

PT/OT Session

Day 49 in the hospital, Day 31 post-Berlin Heart, Day 22 on the transplant list.

Filling And Emptying

Today was a great day, in that Hana was able to get out of the room quite a bit. Last night Hana was awake from midnight to 4am, so I was also awake from midnight to 4am. We decided that she is getting her days and nights confused so we had to work hard to get her up and keep her up! She has her PT/OT, then pre-school then blood work which they were fortunately able to draw from her IV, then a nap. After her nap her nurse was able to go with us for an hour and we took Hana to the outside garden and fountain and then back to the model trains. Hana was even motivated to do quite a bit of standing! I haven’t seen her that happy since we got to the hospital! Later in the day she took some nibbles of cheese puff, grilled cheese and mashed potato. She took a couple of tiny sips of milk.

It was a bit difficult today (other than being tired) because Hana vomited five times. More than half those times was right after she got her medication, persantine. Now they are a bit worried that her Berlin Heart is not filling completely filling with blood for each “beat”. More important is that it is emptying each time and hers is doing that. The incomplete filling could be due to being dehydrated from throwing up so much. They are also watching more carefully the pinpoint, white “clots” in the Berlin Heart. These have gotten more frequent in the last day or so and if they suddenly get big or disappear then it could mean a potential stroke for Hana.

But overall, she is still doing great!

Hana-3238_web

Hana-3249_web
Hana-3257_web
Hana-3258_web

Outside

Things have been moving along steadily. Hana seems a little too tired during the day. They say this could be from withdrawal, as they are very, very slowly decreasing her Ativan and Methadone doses every other day. I think it is also because her sodium has been a bit low. This happened before and once she got sodium replacement, she perked up. Unfortunately, I think it could also be from boredom and depression.

We haven’t been able to get Hana out of the room as much as I’d like. We have to get a nurse to go with us and their patient load is not always such where they can easily get away. Also, with the holidays there are many programs and staff that are not around for activities and services that are normally offered. Hopefully that will all change this coming week.

Today we got to take Hana outside for the first time in more than six weeks. It was only to just outside the main entrance of the hospital but I do think she enjoyed it. She and Poppy also got to see each other for the first time too. While I thought it might be an emotional reunion, it was not. Neither seemed to impressed with the other. Oh well!

We also got to take Hana to see the toy trains, which she really loved. Later in the day we got to take her to the playroom. I think the excursions do her good. I also think familiar visitors help as well. I’m sure Hana gets tired of seeing my face and welcomes the change.

This week Paul and I should get our parent training on the Berlin Heart. That way, we can take Hana out of the unit and around the third floor without a nurse. That will give us more freedom and independence and hopefully will help with Hana’s boredom and depression. We’ve been doing our best to keep her active and engaged in the room but sometimes the same four walls just make you crazy.

Hana’s fibrinogen level has been elevated. They have also noticed more white deposits on her Berlin Heart, so they’ve started to keep a much closer eye on her. They are also watching closely to see if she has any signs of having a stroke. The alarm on the Ikus, which is the huge box on wheels with the laptop on top and basically runs everything going on with the Berlin Heart, has been going off like crazy the last couple of nights. So we are not sure what is going on with that. Hopefully everything resolves itself quickly.

Today I got to go on a nice jog with Poppy. It really improved my mood and I am very grateful for the opportunity! Thank you to all the people who help make that happen. There are many people who may not even think they are helping make it happen, but you are! I think we rely on each other more than we realize or even appreciate. This is something I think about alot especially as I am jogging. There are so many people who have helped Hana. Medically speaking there are the medical professionals who have committed to education and training and their families that have encouraged and supported them. There are medications and equipment and supplies and all those things came as a result of so many people’s effort. Then there are all the people who have supported us with cards, packages, texts, emails, meals, notes, kind words, etc. We are so grateful.

Hana-3148_web

Hana-3153_web

Hana-3161_web

Hana-3163_web

Hana-3192_web

Hana-3207_web

Hana-3194_web

Hana-3230_webHana-3221_web

Day 46 in the hospital, Day 28 post-Berlin Heart, Day 19 on the transplant list.

A New Year

2015 has been a life-changing year. At first, I wanted to call it stressful or crazy or emotional, and although the year was those things because of Hana’s heart condition, it was also a year of blessings and prayers and family and friends and love and support and amazement and gratitude. I am continually amazed by people’s love and I have never experienced like we did in 2015. Thank you to all of you by showing the really amazingly beautiful side of humanity. It is a great reminder that we are not alone and that we can impact lives more than we think and even little Hana has impacted so many lives and she doesn’t even know it!

My wish for 2016 is to get a perfectly suited, new heart for Hana. I realize this will come because another child did not live and the heaviness of this is something I respect deeply.

Hana has been doing well. She is back on continuous feeds and we are watching the administration of her meds carefully – so that they don’t upset her stomach. She seems to have gotten her energy back and seems more and more like herself. We aren’t getting out of the room as much us I’d like yet but hopefully that will improve next week. Hana also needs to continue to work on her strength, especially in her legs with standing, which she is not doing much of at all. I think the biggest hurdle right now is getting Hana back on her days and nights. She’s been up very late at night or getting up for hours in the middle of the night. She is also getting up very late in the morning and sleeping a lot. She is very hard to convince to get up or go to sleep! Sleeping in the hospital has been very difficult for me and I am getting up at least once an hour. Hopefully we can all adjust soon!

Happy New Year!

Hana-3112_web

Hana-3116_web

Hana-3117_web

Hana-3121_web

Day 44 in the hospital, Day 26 post-Berlin Heart, Day 17 on the transplant list.