Today Hana made a lot of progress. She’s been up and walking more, she’s less clingy and less cranky. We all got better sleep last night. Today, though, she would only nap in my arms. I think she may be afraid that I might leave while she’s napping (she’s right). But at least she napped longer, maybe 45 minutes.
We did the last of our transplant teaching today. It seems the only thing we are waiting for now is Hana’s first biopsy, which is some time on Thursday. If those results come back okay then we MAY get to be discharged to the Ronald McDonald House over the weekend. I can’t even believe it! I’m trying to wrap my mind around the idea of being on the “outside” again with Hana. Today I ordered a car seat from Amazon!
Hana did a LOT of walking today. She got the okay to be off the portable monitor so now we can pretty much take her wherever we want in the hospital, including out front and the atrium. We spent a lot of time outside. Hana was content to sit back and let me pull her in the wagon through all these places she’s never been (or at least not for a long time, before being admitted). But then she wanted to walk and roam. We need to get her some sun protective clothing because she will be VERY sensitive to sunlight.
Her nurse was able to accompany us back to the water fountain at the adult hospital. Hana really, really wanted to get in the water! She walked all around and I spent my time keeping her out of the water. It was great! I can’t believe how much more stable she is today than yesterday! It’s been amazing!
Sleep is proving to be difficult. Hana had fits of wakefulness in the night. Finally I asked for Tylenol and she slept for 3.5 hours straight. There still has been no nap longer than 20 minutes during the day. It is very difficult to get her to sleep before 10pm because of all the care ordered at the end of the day. We can’t let her sleep late either because of all the stuff she needs to do in the morning.
Hopefully we are only here one more week. We still need to get through her first heart biopsy on Thursday and another round of IVIG therapy over the weekend.
The days get to be long when Hana is indifferent to so many things. We took her to preschool and the playroom for a short time each. I also wheeled her around in the wagon around the third floor over and over again.
She’s still pretty cranky. It could be healing from heart surgery or cranky from being tired or moody from steroids! Her nurse again took us over to the fountain in from of the adult hospital. Hana did a lot more walking and almost running and she almost looked like she was smiling! We still hav to be careful of her falling, especially if she tried to catch her fall – she could really hurt her chest incision (hopefully the staples are coming out on Thursday).
Hana got her pacing wires out and her dressing changed. They started to wean her diuretics. Maybe soon she can be off the monitor or portable monitor and we can take her out of the room, off the third floor and maybe even down to the atrium. That would be amazing. But then again, we have had the privilege of so many amazing things come our way!
200 days in the hospital, 9 days with her new heart.
Last night was a bit rough for me – sleeping didn’t go too well, but it didn’t go too bad either. I think I woke up to comfort Hana six or seven times. Part of the problem is the quiet. You hear every little noise when there is no longer an air compressor in your room. Fortunately, we’ve always used Hana’s white noise machine so that has remained a constant. In fact we are on the second white noise machine, the first one got dropped so many times in the hospital. But if I’m talking about quiet and white noise then things must be going pretty well.
We are chipping away at things in order to get discharged. Her cannula sites need to ooze a little less. She is coming down on diuretics which may need adjustment to other meds for high blood pressure (common for heart transplant). She needs to finish her IV antibiotics. They need to get her tacrolimus (Prograf) levels just right. She’s off her oxygen. She needs to get her pacing wires removed. There are a few more things to watch and do later in the week. There’s a chance that she could be discharged next Monday. I’m trying to wrap my mind around that.
Hana has been more attached to me than usual. She watches me like a hawk to see if I’m going to leave. I get it. I don’t blame her for being like this at all. I also feel that she can be guided to trust again. She’s been through a lot and much of it she’s had to face without me or Paul. I don’t let my heart break about that anymore because there’s nothing I could have done to change it and it doesn’t do any good – I just try to validate, reassure and guide her forward. Right now she needs a lot of cuddling and so that is just where she is in the process, I don’t complain because I enjoy it too!
Of course, you can’t cuddle all day, every day. It seems like that would be the best medicine, but sometimes getting up and moving around is also very important. That’s when you have to push tough love because Hana did not want to get up. It was time today for her to really start moving. They turned off her oxygen this morning and Hana needs to work her lungs. A friend (adult) that Hana loves came to visit and that was motivation for her to start playing and talking a little and she even ate a little food!
In the evening Hana’s nurse, one that she’s had in the past, took us over to the adult side of the hospital to the big fountain. We wheeled her in her red wagon through the empty, Sunday halls to the main entrance. It was her first time outside without the Berlin Heart since mid-November. When we got to the fountain, a place Hana has never seen before, she tried to climb out of the wagon. We helped her out of the wagon and I thought she was going to jump in the pool of water! (She can’t take a bath for at least six more weeks.) Hana has barely stood, let alone walked, in a week but she started walking and almost running around the perimeter of that fountain. She started signing too – water, tree, again, bird, rain – she thought the fountain was rain. She was in awe. She was just amazed and joyous. Her transformation was so amazing, I think we were all teary eyed.
199 days in the hospital, 8 days with a new heart.
Today Hana graduated from the CVICU and went back to her old room on 3 West (supposedly now known as Unit 374). Her nurse in the CVICU was in training when Hana was there last time and the nurse who got her on 3 West had also been training when Hana first got here. I guess it goes to show how much time has passed because they are no longer new hires.
I think people really worked hard to get Hana back in her old room. We really appreciate that because I think it has made things less scary for her. Her old room still feel quite different because all the decorations are gone, but there is still a familiarity about it. She has also had two nurses that she has not had before (actually she had the night nurse a long time ago during a previous stay) because they are not trained with the Berlin Heart. I think it has been a scary and confusing time for Hana and the more she is familiar with, the better.
Hana got her central line (the IJ, which was in her neck, not my favorite place for a central line) out once she got her potassium and magnesium. In the middle of the night they started a new IV (I wish they had called me to be with her), I guess her other one was just too leaky. So now she just has one IV, nothing else. They’ve been going down on her oxygen and hopefully she’ll be off it tomorrow. Hana is back to her full feeds of straight breast milk. She is refusing to take anything or much by mouth. So, she continues to have her NG tube.
Hana has been a little bit sweaty with clammy hands and feet, no fever, so they are just watching that.
I’m slowly getting a handle on her meds. Some, she probably won’t be on more than a few more days. She still is getting IV Cefapime antibiotic. She is getting a breathing treatment of amphotericin twice a day while she is in the hospital. She is getting awful Nystatin swabbing of her mouth three times a day. She is getting Lasix and diuril enterally. The rest of her meds she will probably be on for a while (or forever).
She’s doing really well! I can hardly believe that a week ago she was getting her heart transplant. It is surreal. It hits me a few times a day and I can hardly believe it. From the beginning, in February of 2015, to now and now she has a new heart, so much has changed. I feel like a part of me has been removed and replaced too. We will never be the same. Too much has come to pass. It’s kind of like when you become a parent for the first time and suddenly you can never be the same person you were before they were born. You can never unknow what it’s like. All of this has been a lot like that, except much, much more traumatic. All of it hasn’t been traumatic, in fact, I’ve never experienced as much love and support, who knew people could love so well?
But we can.
198 days in the hospital, 7 days with Hana’s new heart.
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!
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.
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.
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!
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.
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!
Cinco de Mayo celebration
Watching the ants go marching one by one.
178 days in the hospital, 160 days post-Berlin Heart, 152 days on the transplant list.
We were overall pleased with the news segments from Wednesday. I wish they had focused a tad more on the importance of organ donation, but it has been a positive experience. Unfortunately, it doesn’t seem that the station Abc7 decided to post a link to their segment on Hana. We did get to see it but only when it was broadcast live.
Below is the link to the ktvu (channel 2) station segment on Hana:
http://scopeblog.stanford.edu/2016/05/05/doctors-at-packard-childrens-extend-life-of-20-month-olds-failing-heart/
Never, in my lifetime, did I think I’d solicit a news story. But, since it’s about Hana and not about me it wasn’t too hard! I wasn’t really nervous to be on camera, we feel strongly about helping the cause, but if there were a way to tell the story without talking to me I would have liked that! Of course, a big part in this decision to solicit a news story was Hana’s personality. She is such a friendly kid and seems to handle attention well. We felt she would be fine with the cameras (and she was!).
We were really glad to add a message out there on the importance of organ donation! Please help spread the word.
Hana’s cardiologist being interviewed My interview Hana, this morning
168 days in the hospital, 150 days post-Berlin Heart, 142 days on the transplant list.
Today a couple of news stations came to cover a story on Hana. Surprise! We wanted to do this in April, for Donate Life month but the scheduling didn’t work out. The hospital’s media relations organized everything and it included an interview with Hana’s primary heart failure/transplant cardiologist. I’ll post more about the whole experience later, but for now, I just wanted to put the word out for anyone that wants to try to watch. I think you can stream it live and I believe it will at least air on the five o’clock news but likely with additional air time.
Today Hana turned 19-months old. It is also the 4-month mark of Hana being in the hospital. It seems like a lot longer than that. Below is the sign Hana and I made for the door to her room. We are really hoping that her nurse, Marisa, gets some special recognition for doing such an amazing job of handling the situation when Hana’s Ikus stopped. I think everyone deserves some kind of recognition because there were many others that also responded so quickly, it was really a great team effort.
Our restrictions with plugging in the Ikus have been mostly lifted. We still have to keep the Ikus plugged into the wall while Hana is in her room. This does limit our mobility in the room but we are working with it. Other than that we are just trying to get out of the room for twenty minutes at a time so that we wear down the battery each time.
I took the plugging into the wall situation very hard. Sometimes all of this hospital living can wear on you. Actually, having a child with a long term medical condition can wear on you. I deal with it by having a positive outlook and really trying to shield myself from negativity but it is a fine line. This latest thing just pushed me over the line, but I just remember that really, we are extremely grateful. Hana is being cared for by an amazing team of people in an amazing hospital. She has a very serious heart condition that has treatment options, even though transplant is not really a cure (it is swapping one heart condition for another). Not everyone has options. So we are very, very grateful.
I know I complained a little about her nurse the other day and I feel bad about that. The nurse is a very kind and caring person who is dedicated to giving Hana the best care she can. She is very attentive. She is a really nice person. I just was not thrilled about how she reacted to the light on the Ikus being a little slow to go off. But we are grateful to have so many great nurses.
This afternoon we got to take Hana outside twice. The first time we went to the atrium and took some pictures of Hana without her mask on (just for a few minutes). Today we also changed out her NG tube so she got several hours break from the tube and we got to take some tube free pictures too! She really loved smelling the flowers! She scrunched up her nose when she was working on smelling them! She loved inspecting the small flowers.
Later in the afternoon we were able to take her out to the grassy area in the front of the hospital. Hana was thrilled to see some new sights. There were some big birds (ravens) and squirrels. She also got to feel some grass! It was very exciting for her.
Thank you for all of your support!
Long eyelashes!
122 days in the hospital, 103 days post-Berlin Heart, 95 days on the transplant list.
Hana's Heart 