Pretty In Pink

Posted on by katmeander

Hana is doing great! She turned 18-months a few days ago. Right now she is really into playing with balls and cars. She also likes opening and closing anything and velcro. Our friends got her a slide and she loves it! I also surprised her with a tricycle, which she also loves. I think she is still making up for lost time when she was in the CVICU and laying in bed, sedated for five weeks.

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Hana is sleeping better at night, especially since she is getting bolus feeds instead of continuous feeds. She is only getting her vitals spot checked a few times in the night and every four hours during the day. They do check her Berlin Heart pump for clots and deposits every four hours. She is also only getting weighed three times a week. Unfortunately, she is starting to get bored with the hospital preschool, which is not really geared toward regularly attending, long term stay kids. More unfortunately, Hana’s IVIG therapy does not seem to be working quite as they had hoped. This is the therapy that suppresses her antibodies so that she can accept a wider range of donor hearts. The therapy is suppressing the targeted antibodies but it is making others skyrocket. They will try one more round before considering other options. Maybe it means we will have to wait longer, I don’t know, you never really know.

We have received some really great activities for Hana – learning and sensory things. She is really into learning words and it is amazing to watch the joy of learning unfold right before your eyes. I think what Hana likes best right now is walking. So, we’ve been doing a lot more of that. I push the Berlin Heart Ikus around the third floor following her (chasing her sometimes) and keeping her from going past her six foot drive line. She is not that fast yet but she is still unsteady and falling is not a good idea with all the blood thinners Hana is on (sometimes she bleeds for a whole day just after getting an injection). I’m thinking of getting her one of those toddler leashes just to keep her safe so she does not pull on her drive line, which could be dangerous, but I’m not wild about the idea.

The Berlin Heart Ikus is not the easiest thing in the world to push. (The Ikus is the box on wheels that contains the air compressor and on top of it sits the laptop computer that runs everything.) First, it weighs 200 pounds. Second, the wheels do not turn very easily at all. Third, the long electrical cord (which I am very glad to have because it lets us move away from an outlet) is always getting in the way of the wheels (this is more of a problem in a small space or when Hana goes back and forth, rather than continuing on straight ahead). Someone said that pushing the Berlin Heart Ikus is like pushing the refrigerator. So, if you are going to push a refrigerator through the hospital day after day, you might as well do it in style.

Yesterday, Hana got a new Ikus. Now, she needed a new one anyway because her original one was due for routine service. But this is the surprise that Hana’s nurse practitioner, who specializes in these devices, has been working on. Hana did not get just another boring blue and gray Berlin Heart Ikus. She got a pink Ikus. A hot pink, Barbie pink, candy pink so sweet it will give you a stomachache. It’s actually very exciting and many people have come by to look at it, which has been kind of nice. I’ve heard there are only two pink Ikus’ in the world. Now we just need a name for this hot pink beauty. Any suggestions?

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On another note, a few friends are doing various heart fundraisers.

Two fundraisers are children who are doing jump rope events for the American Heart Association. They are jumping in honor of Hana! You can visit Carter’s site:
Carter EarleyIf I get Michael’s site, I will share it!

Another fundraiser is local to Santa Cruz and is for the Children’s Cardiomyopathy Foundation, (Hana has dilated cardiomyopathy) in honor of their daughter, Maya, who is a few months younger than Hana and also has dilated cardiomyopathy. Hana and Maya are heart buddies and unfortunately they got to spend some time in the hospital together (although we knew them before their hospital stay). If you are in or around Santa Cruz, there will be a bake sale at Shoppers Corner, 622 Soquel Ave, Santa Cruz from 10am to 1pm on Sunday, February 28th.

The last fundraiser is for Hana’s Heart. It is being run by a college friend of mine. We are very humbled and honored by all the support and help. It warms our hearts. Here is more about it:

https://www.facebook.com/lovesap/posts/10208846272332915
Pink Zebra Fundraiser

Day 98 in the hospital, Day 79 post-Berlin Heart, 71 days on the transplant list.

What We Are Waiting For

Posted on by katmeander

First off, I want to say Hana’s surprise has been delayed again and now we are looking at Friday of this week or Monday.

Second, Hana is doing great! She’s not puking too much, her vitals are stable and we are just working on getting some of her transplant blood work repeated since some of it was done a year ago. She seems to be fairly on track with her developmental milestones other than eating. Her walking is actually shakier than when she was at home and I attribute that to the pump and drive line always being in her way. Some development will be delayed and that’s just the way it is. We are working on independent play skills and sensory learning since that’s where I can actually do something to change what is.

We are settled, as best as we can, in this “camping” mode in a child’s room which is inside a hospital. I still get a bit frustrated at our loss of autonomy and independence, especially when it comes to Hana’s care. At home, I was always tweaking things in order to optimize outcomes for her – such as when to give meds or tube feeds so she doesn’t feel sick or tied down and she gets the maximum amount of normal kid activity and sleep as possible. I was particular, maybe even meticulous. I do my best here but it can be challenging. I get frustrated when people get bent out of shape because they see me whiz down the hallway carrying Hana, pushing the 200 pound Berlin Heart Ikus with a backpack of activities and we are on our way to the seating area on the third floor for a change of scenery. The get bent out of shape because they can’t fathom all that being manageable. Just because they imagine it being hard for them does not mean it is hard for me. It may require a lot of effort, but that doesn’t make it hard or even unsafe. I don’t want to be limited by others’ limiting beliefs. I can be very stubborn that way, but please don’t tell me what is not possible just because you cannot imagine the possibilities. This is the hardest part of living in a hospital (in our current situation).

But. Yes, there is that. I busy myself creating as much of a normal childhood for Hana as possible and maybe that is because I want to enjoy the break from worry and high stress that will come when she has her heart transplant. I know that day must come and hopefully soon. But it is a hard thing to hope for. In order for Hana to live, another child must die. And although that child is not dying so Hana can live and they would have died either way, still, it is the death of a child that will save Hana. Somewhere in the western United States a child is living and breathing tonight who one day, relatively  soon, will not be, and Hana will get his or her heart. So, to hope for this day to come soon is hard to wish. But the day is coming with or without my hope and what I tell myself is that we hope Hana gets matched with an available heart soon. But still.

Forever, as long as I can make that stretch, I will be full of gratitude for the family of that child and the child whose heart will become Hana’s. Thank you for the honor with such a precious gift.

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High Stakes Caretaking

Posted on by katmeander

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
 
 
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An Amazing Story

Posted on by katmeander

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.

  
  

A Surprise For Hana

Posted on by katmeander

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!

 

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Hana watching Rachel and the Treeschoolers

Day 53 in the hospital, Day 35 post-Berlin Heart, Day 26 on the transplant list.

 

Filling And Emptying

Posted on by katmeander

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!

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Outside

Posted on by katmeander

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.

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

The Balance Of Fluid

Posted on by katmeander

Today Hana was fast asleep with a heart rate in the 160s – that’s way too fast. Her temperature has been normal, thank goodness. She is very sleepy even at 10:30 am. So, the doctors scratch their heads and puzzle over this latest change. The heart failure/transplant doctors are worried that fluid is backing up where it shouldn’t and the right chambers of her heart are working too hard or are in failure. The CVICU doctors wonder if she is too dehydrated, except that her fluid output (they measure exactly how much fluid she gets compared to how much they can measure that comes out – they weigh her diapers, etc.) does not suggest dehydration. Her BUN and creatinine levels (from blood work) do not suggest she is overly dehydrated.

The attending physician looks at Hana and he thinks she looks very dehydrated. Her eyes are sunken, her lips and hands and feet are very dry. He said that BUN and creatinine are not reliable tests for children. He also says that her sodium has been on the low side for a while and that can wipe her out. He orders sodium replacement and some IV saline. The heart failure Doctor requests that they use her Power PICC to check Hana’s CVPs (central venous pressure) and he talks about doing an echocardiogram to look at the right side of her heart. By the way, Hana’s CT scan came back with no problems so that is a huge sigh of relief!

After the IV saline, Hana’s heart rate crept down, her CVP which was at 1 or 0 and that came up to 5 or 6 and Hana woke up and wanted to play! The heart failure Doctor was still skeptical but he did put off doing the echocardiogram. Hana should get one soon regardless. So despite feeling very stressed for a while this morning, it turned out to be a good day. Hana even got another chest tube out. 

We spent some time in her room opening some packages and decorating while playing some Christmas music. I haven’t heard any Christmas music this season before today!

   
   

Out Of Bed

Posted on by katmeander

Today they are continuing to wean Hana’s Precedex (dexmedetomidine) drip. Her clonidine patch should be effective so they can start to wean a little faster. Overall she is a little overly sedated. We are trying to be careful that Hana doesn’t get her days and nights mixed up! Last night she was wide awake and playful at 10pm. They are also increasing her aspirin to 3 baby aspirin a day (crushed, mixed with water and sent down her feeding tube). Since they took out her arterial line yesterday, Hana must have blood drawn peripherally- the way we all do, with a needle stick. This will still happen every day for a while until her results are stable and then she will only do it it twice a week.

The physical therapist and occupational therapists came again today but Hana was so sleepy that she didn’t do much. However, they did get her out of bed and had her sit on my leg on the floor. We did that for two hours! Hana would fall asleep sitting up (with me supporting her) and then wake. I think it was really good for her to start using her muscles more and to get out of bed!

Last night my mom made a Berlin Heart for Hana’s Christmas reindeer! Everyone loves it. Thank you all for the packages and cards and goodies! But most of all, we are so thankful for all the well-wishes and prayers. It really does help us knowing we have so much moral support. We feel very lucky.

   
    
 

Day 2

Posted on by katmeander

Today Hana had more OT and PT, which they do simultaneously . She sat up with support and reached for toys. I missed it, but apparently she tried to stand up too! 

They put on a 1/4 of a clonidine patch so that they can start weaning her off the precedex tomorrow. This is the last drip to wean. Hana was also switched to regular nasal cannula on 2L and she rubs it out of her nose and her O2 level stays at 100% so I think she is ready to breathe on her own. Then we can move to the step down unit. They are thinking early next week, as long as there is a bed available. Hana should get her own room, if one is available because she is active on the transplant list. Oh, they also took her arterial line out, which they tried to save so they don’t have to draw blood from her PICC line, but the art line stopped working. So now Hana no longer has an arm board on her left arm which means use of both arms and hands!

Hana is getting bored. She doesn’t want to watch tv shows or sing songs or play with toys- what she wants is to get out of bed. She also wants to drink. That should happen tomorrow!

Today is Day 2 on the transplant list. I decided to chronicle her wait time with photographs on this page.