transplant – Page 2 – Hana's Heart

Problems With Pink

Posted on March 6, 2016 by katmeander

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First, I want to start off by saying that we have been enjoying the novelty of Hana’s new pink Ikus (the air compressor part of her Berin Heart unit). In pink fashion, a college friend of mine is doing a fundraiser for Hana through Pink Zebra products. The fundraiser ends March 7th. Now, I am TERRIBLE (shy) at promoting things like this but Laurie has put in a lot of really great effort and we really appreciate it! The products look amazing and I was kind of wishing to get some for myself!

In other pink news, the so far unnamed pink ikus has been a little problematic. It alarms a lot more that Hana has “kinked” the tube from the the pump. I’ve been told that this will happen when you switch out the ikus and it will adjust as time goes on. But the more worrisome problems are the alarm about measurement discrepancy (not to be worried about but mildly annoying) and the discharging battery alarm. The latter is a very serious alarm. The Berlin Heart battery is guaranteed to last 30 minutes (and it takes six hours to charge!) and it gives you a warning when you’ve used the battery for ten minutes and then again at 20 minutes. When you get to 30 minutes it alarms that the battery is discharging. Or, so I’ve been told because we have never taken the risk to wait and find out. So, we’ve been quite surprised to get this alarm after using the battery for only ten minutes. The first time it happened we were outside with the nurse and we had to run in to the nearest outlet to plug in. It’s considered a very urgent situation. Well, we were told (by Berlin Heart) it was okay and we were able to go back to Hana’s room but now it’s happened two more times and we end up running back to the room and plugging in. Today they sent the logs from the computer to the company. Today the cardiologist, one of the leading experts on this device, told me that I should rest assured that even if the pump stopped working Hana’s heart would do fine pumping on her own until they could get her hooked up to the backup Ikus. Besides the emergency hand pump is there too. I’d really like to keep the pink Ikus so I hope they can figure out what is going on.

My sister has been here since Wednesday morning and we’ve had a lot of fun. She leaves Monday night. It was great to have company here during Hana’s IVIG therapy since Hana couldn’t leave her room for 24 hours. I’m sad she has to leave. She did get to witness Hana’s explosion of new signs and words. She has a new favorite each day. My personal favorite was “rainbow” which she usually shortens to “bow”.

Thank you for all the love and support we are so grateful! I never get tired of saying this and we truly feel very lucky every day.

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109 days in the hospital, 90 days post-Berlin Heart, 82 days on the transplant list.

A Sweet Loss

Posted on March 1, 2016 by katmeander

Hana continues to do really well. We are amazed and incredibly grateful everyday. She has a new sign to add to her vocabulary almost every day. She is getting sturdier and faster on her feet. She is getting better at independent play. Her drinking of breast milk has plateaued and so I have cut down on pumping once again, since there is no reason to be freezing more breast milk. We have enough to get Hana through sickness, if she were to get sick again like she was last October.

I ask myself how much longer I will pump and there seems to be much debate in this country on how long it is appropriate for kids to get breast milk. The World Health Organization says two years but I don’t know about six more months of exclusive pumping. But, until Hana will reliably drink something else, I guess I’ll keep pumping. She is starting to get interested in cow milk.

This week Hana will get IVIG therapy again. Let’s please hope it works! We heard more about the other options to lower her antibodies and they aren’t desirable. They involve plasmapheresis and medications used to treat cancer (although in a much smaller dose). Hana would have to go down to the pediatric ICU during treatment. She would have to get a central line.

Tonight, though, what is heavy on our minds and hearts is the news of another child, sweet Charlotte, who passed away on Sunday. We met her parents when Hana was in the CVICU. Charlotte was our next door neighbor here on 3 West. She was her parents only child and she was a couple months older than Hana. She was a sweet baby girl. I don’t know what else to say, but my heart is aching.

Thank you to everyone for all your support.

104 days in the hospital, 85 days post-Berlin Heart, 77 days on the transplant list.

Pretty In Pink

Posted on February 24, 2016 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 February 17, 2016 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.

A Surprise For Hana

Posted on January 10, 2016 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!

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 January 4, 2016January 4, 2016 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 January 4, 2016 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.

Out Of Bed

Posted on December 18, 2015 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.

Listed

Posted on December 15, 2015 by katmeander

Today Hana had a fever (38 degrees Celsius) and a high white blood cell count (70 K/uL). This makes everyone worry about INFECTION. She had finished her post-op antibiotics yesterday so they started her on 3 antibiotics today and they also cultured her PICC line and IJ (internal jugular) line and they did some other blood work. By the time they rounded on Hana the results came back and it does not look like infection but a reaction to the steroid that is used to treat high fibrinogen levels (which need to be low so clots don’t form in the Berlin Heart). For me, it feels like an internal roller coaster ride.

They are moving right along, especially to get her off her IV drips so they can take more lines out and reduce the threat of infection. They took the IJ line out (my least favorite, I’m glad it’s gone!) The fentanyl has been off since yesterday evening. They took off the Nitroprusside and are going down on the Milrinone and increased the enalapril that she gets through her feeding tube. They stopped the Heparin drip and she will now get heparin as an injection twice a day (Lovenox), everyday she has the Berlin Heart. They decreased her versed drip. She is getting alternating methadone or Ativan every three hours. Her withdrawal is somewhat borderline in my opinion, her hands often shake when she is awake. they stopped her TPN and lipids and she is now getting a “normal” volume of continuous feeds (NJ tube right now). They’ve been decreasing her CPAP pressure (6) and hope to have her on high flow nasal cannula by this evening.

I did not get to hold her yesterday purely because of logistical reasons but hopefully that will happen today. The great surprise yesterday was that Infection Control took her off isolation- so no more gowns, masks and gloves! It makes it so much nicer to touch skin to skin (but I also realize how much the masks and gloves were helping to keep my nasal passage and hands moisturized, the hospital air is very dry and can make my nose bleed)!

Despite the infection scare, which was a big deal for a few hours this morning, this is not the biggest news of the day. The big news is that today Hana has officially been listed as status 1a for transplant. Today is Day 0 and the average wait time in our region for her age range is 6-8 months but it could be any time.

Today is Day 27 in the CVICU. I asked how much longer Hana may be here before moving into the floor and they said the soonest she would move is 48-72 hours, if things move as they have and she really doesn’t have an infection. I was just hoping to be out of intensive care before Christmas!

Little Things

Posted on May 18, 2015 by katmeander

Things have been going well. Hana still vomits once a day. Today it was in the morning and it wasn’t too much. I guess what makes her vomiting different, perhaps, from other kids that may vomit a lot is the intensity of it. There is usually crying, choking, and a lot of dry heaving. It is not like you look over and say, “Oh, she vomited!” It is usually much more dramatic. Not always, but most of the time.

I feel like things are really starting to come together. This is not without a lot of help and not enough sleep. What makes things busy for us, busier than a family with one baby might otherwise be, are the little things. It is pumping breast milk, washing pumping supplies, washing bottles, rinsing feeding bags, cutting bandages into ovals (and hearts), measuring and mixing formula, washing syringes, ordering meds, picking up meds, drawing up meds, ordering adhesive remover and NG tubes and feeding bags and syringes and adhesives and formula. It’s sending messages to doctors, logging when you fed her and gave meds and when she vomited and tried to eat solids. It’s starting her tube feed at the right time, but not when she is rolling around or when its time to nap. Its talking to the case manager about supplies and samples and breast pumps and prescriptions and what messages have come from Stanford and what echocardiagrams I need to take to them next time I am there and how much Hana weighs this week and how many times she vomited and when. It is a lot moving parts. Not too many of them can slide, either. They all have to get done and by a certain time and not too early either!

This is why all the help has been fabulous, because keeping up with all the new stuff leaves little time for normal things like grocery shopping and making dinner and cleaning and paying bills and doing finances and taxes and laundry. But each day it gets better, mostly. Today was a good, low-key day. We took Poppy on two good walks and spent the rest of the day getting naps (Hana, not me) and attempting solid foods and bottles and giving tube feeds while she was upright and awake but still getting time to practice crawling on the floor. Tomorrow we go back to the GI doctor. I have a long list (in my head) of things to go over, like choices of medications, and weight gain and types and sizes of tubes and formula, volumes and rates of feeds and how much to fortify and when I should stop pumping breastmilk. There are more questions, I hope I can gather them all together before I forget!

Here are some photos from the last couple of days.