I am sick with a bad cold. I suppose it was inevitable with the lack of sleep, but I have become a bit more lax in the hand sanitizing since leaving the CVICU. It is a good reminder to get now versus post-transplant but practicing good hygiene is so crucial. It is also important to take care of myself which is incredibly difficult. But, as Hana’s primary caretaker the stakes are too high to gamble with my health because that is ultimately gambling with Hana’s health.
People really like to tell me to take care of myself which almost makes me mad to hear. I would love to take care of myself! If someone could just figure out how I could get the time to do that I would be grateful! Honestly, this week has been the first really stable week in Hana’s time here so I do finally feel okay about stepping away and taking care of myself. I just need to get a good night sleep or more sleep. My brain is not making sense – yesterday I tried to put Hana’s hand in the buckle instead of the actual buckle.
Fortunately we have amazing friends. Our friend Judy came down and spent the night with Hana last night and tonight our friend Lou is staying the night! Last night, after sleeping in my own bed, I felt like I slept on a cloud (that really was my first thought when I woke up). Other friends are sending food which has been so great. We’ve also been getting a fair number of toys which really helps to break up the monotony! I wanted to be a minimalist parent when it came to toys, but having rotating options has been very helpful.
I really hope Hana does not get my cold because then she will not be allowed to leave the room!
This week has been about going to PT/OT, preschool, going on walks, and trying to get on a sleep schedule. Hana is now on her goal calories of 30kcal/oz for her feeds. She is still getting continuous feeds which is very inconvenient to carry the feeding pump around (another tether!). I am going to push for trying bolus feeds again next week. She has started drinking again – about 4 ounces a day! She is also interested in food and has been doing a lot of food exploration! Hana is still weaning off her methadone and Ativan. Most of her other meds are pretty much at her goal dose although there will be some tweaking as we go on her anti-coagulation meds.
Hana has been happier than I have ever seen her. The Berlin Heart has allowed her to feel better than maybe she’s ever felt. We have so many things to be grateful for! Thank you!
Hana watching Signing Time Good Morning pre-school
Below is a link to a Dateline story about a family we’ve met here at the hospital. I mentioned them when we met the mom, Stacy, in the Transplant Talk post. Three of their five children have/had dilated cardiomyopathy and two have already had heart transplants. Their oldest, Sierra, has had two heart transplants. Their youngest, Gage, is currently on a different ventricular assist device (VAD) than Hana. Gage has a much smaller device and is able to leave the hospital to live at the Ronald McDonald House while he waits for his heart transplant, but his sister Lindsey was on the same Berlin Heart device that Hana has.
This story tells and shows much of what our life is like here (minus the huge additional stress of having multiple children with life threatening heart conditions). The doctors, nurses, rooms and hallways are all too familiar! I see Stacy sitting outside the hospital school on our way to and from PT/OT every morning.
Here is the link to watch Dateline: Against The Odds. According to Jason and Stacy’s blog, their will be a second Dateline show airing on January 17th (10 pm Pacific, 9 pm Mountain, and 7 pm Central and Eastern).
Hana is doing well! She is teething and still waking for hours at night but otherwise really well! Things are starting to fall into a rhythm.
One Nurse Practitioner said that sleeping (as a parent) in the hospital was like having a newborn. She is right. Although I think most of the night nurses do an excellent job of sneaking in and out of the room and clustering their care, but Hana still wakes up! To me, the most ridiculous thing is to weigh the patient before night shift is over. Who wants to get woken at 6:30 am or earlier to be stripped down just to get weighed? They have grown more lax about this and Hana gets weighed later in the morning. Thank goodness!
The hardest thing in all of this is Hana just waking for no apparent reason. It seems we get one good night a week where she sleeps pretty well. The rest of the time she is up for hours and hours before falling back asleep. Last night, Hana got a blood transfusion (which meant a lab poke in the morning for blood work whose results led the doctors to order a blood transfusion and then another lab poke to type her blood and start an IV to receive the blood). Two hours into the transfusion, Hana woke up and became playful and agitated. She was up from 10 pm to 2am. I had to stand over her crib watching her because she wanted to pull her IV out. So, Hana was cranky today. Otherwise, things have been moving along and we are trying to settle into some sort of routine or rhythm.
At the end of the IVIG post, I mentioned I had something exciting and special to share to Hana. I’ll tell you about that here, but first, I’ll give you an update on how she is doing.
Hana’s fever broke and things got much better. She was still kind out of it the next day, but she also didn’t really get to sleep until 1am the night (morning) before. She mostly acted like she was sick and not feeling well. After her afternoon nap she was back to her usual self! They continued the IV antibiotics and one antibiotic, Vancomycin, requires a blood test before the fourth dose to make sure it isn’t taxing the kidneys too much. I knew earlier in the week they were a bit concerned about her kidneys already because of a high creatinine level.
So, this required another blood drawl which was totally botched. A flex nurse came to do a heel stick and was not able to catch the blood in her tube for collection. They tried to get someone from Vascular Access, but they all seemed to be gone for the day. Then they tried to call the lab to get someone but by then it was 8:30 and the blood was supposed to be drawn at 7:30 and the fellow that was on that night said that we missed the window to get the blood draw and the results would not be accurate. Instead she was going to give the Vancomycin dose anyway and then do the blood test before the fifth dose. Unfortunately that would mean a blood draw at 4am.
I was not happy about it but I was worried about Hana’s kidneys. The nurse tried to press the fellow to wait until morning but she said no. Hana has done fine on Vancomycin before. So, at 4am the phlebotomist came and woke Hana up and drew blood. He actually got it right away so that part was fine but Hana was still crying and lightly screaming and then did not go back to sleep until 7am. I was so tired! I felt terrible that Hana had to put up with all that. Then, the results came back with an utterly ridiculous value of 62 (I think they were looking for something to be 4-6, whatever that means, I don’t know). The team, when rounding in the morning, were appalled at the whole story.
I wish I had known better, but I didn’t know enough to push back. In the end they decided to stop the antibiotics all together.
On to the surprise for Hana. I want to start off by saying we have received many, many wonderful, generous and heartfelt surprises, including ones from strangers. For example, the husband of a friend from college stopped by on Saturday with milk (my request!) and some really awesome toys for Hana which she loved! Or the amazing Christmas tree created by the students at Leach School in Delaware or all the handwritten and handcrafted paper Christmas ornaments created by children from all over including what seemed to be, every student at Parkersburg Catholic High School. But the surprise we got Thursday was really different from anything else so far.
As some of you may know. Hana loves Baby Signing Time – a show that teaches babies and really young kids sign language. It has great music and is really well done. It is a spinoff of Signing Time, which was a show on TV for older kids. The woman who does the show, Rachel Coleman, also did a show called Rachel and the Treeschoolers, which Hana also loves. She watches them all the time to calm her down. We play them on the iPad when she is getting blood draws, echocardiagrams, shots, dressing changes, etc. She watched them to keep her calm so she wouldn’t throw up during tube feeds at home and also to keep her occupied when we had to patch one of her eyes for an hour a day. They work like magic. We were introduced to Baby Signing Time by some friends from college who bought us the DVDs. I don’t know what we would do without these shows. I tried other shows and they just haven’t worked!
Well a very special friend of Hana’s decided to contact Rachel Coleman to tell her how much her shows meant to Hana and that she watches them everyday in the hospital. So Rachel recorded a personal video message to Hana and sent it to us! In the video she talks to Hana and walks through the studio and backstage and shows some old props and outfits from the episodes. It was really awesome. When I showed it to Hana she was mesmerized with a concentrated look on her face trying to figure out how the woman from her favorite shows is on this video talking to her. It was very, very touching. I cried. Paul was amazed. Rachel Coleman is obviously someone really dedicated to children, generous with her time (she is also sending Hana episodes of Signing Time) and a genuinely good person. It meant so much to us. Rachel has one daughter who is deaf and another daughter with cerebal palsy.
If you have kids I highly I highly recommend her shows. They are not only educational but they teach about kindness and include really great music. Thank You Rachel Coleman!
Hana watching her video from RachelHana watching Rachel and the Treeschoolers
Day 53 in the hospital, Day 35 post-Berlin Heart, Day 26 on the transplant list.
Hana had another rough night and was up from 2-6am. Then we had to make her get up for PT/OT. She perked right up and we had a good morning. Her IVIG ended at 10:30, after which she needed bloodwork. In the afternoon she took a long nap. We finally woke her and took her out with the nurse to the library. She was not excited to get out and threw up in the library. Then we took her to the outside atrium and she was cranky and wanted to sleep. Something wasn’t right.
Back at her room they took her temperature and it was pretty high. Her heart rate was high and she had intermittent labored breathing. That’s was things started to tumble down. Doctors and nurse practitioners started showing up. She had multiple blood draws and 4 attempted urine catheters. They started IV antibiotics and she got a chest X-ray. They mentioned going back to the CVICU.
I’m too tired to tell the whole story but it was very tense and I cried and then they finally decided that it was most likely a delayed reaction to the IVIG. We were all stressed and worried. We didn’t really get a chance to even eat dinner! My mom leaves in the morning and it is going to be hard not to have her help (and of course we will miss her).
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.
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!
Checking out the camera
PT/OT Session
Day 49 in the hospital, Day 31 post-Berlin Heart, Day 22 on the transplant list.
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.
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.
Day 46 in the hospital, Day 28 post-Berlin Heart, Day 19 on the transplant list.
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!
Day 44 in the hospital, Day 26 post-Berlin Heart, Day 17 on the transplant list.
Hana's Heart 