Outside

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

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

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

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

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

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

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

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

The Balance Of Fluid

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

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

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.

  

Listed

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!

  

Another Day Of Rest

We are all feeling a lot more relieved since Hana’s Berlin Heart surgery. Her vital signs look a lot more normal. This is so reassuring from Monday before surgery when I saw her heart rate drop to 60. 

Hana is still doing great in recovery. Her X-ray still looks the same but all the doctors, NPs and nurses that listen to her say they hear a lot more aeration in her left lung. Today they did an echocardiogram and they feel that her right ventricle is still working pretty hard so they don’t want to go down on the epinephrine yet. She is still on all the same meds. Today they started her Heparin therapy which helps to prevent blood clots which is the biggest risk/side effect of the Berlin Heart. They also started her feeds although only 2 mL/hour which I guess is just to activate her gut. In think they need to come down on the epinephrine before they increase feeds.

I got to watch them change the dressing on her surgery site today. I saw the staples up her chest which were the strangest looking because the skin is raised. I also saw where the chest tubes and the cannulas are coming out of her body. Eventually I will have to help ace bandage up the area to keep everything secure.

Hana was in and out of wakefulness today. She seemed less agitated than yesterday. Although she seems more frustrated, maybe because she is more aware. She seems to want to stretch. Her nurses have been great and she often has two nurses. One nurse will train the second nurse for four hours on the Berlin Heart. I hope four hours is enough training. One interesting thing is they have to send blood work to a special lab. A runner comes up and waits by the bed while the nurse draws the blood. Then the runner goes and takes it immediately to a lab a few miles away.

As for the rest of us, Paul is getting work done as is my dad. I’m trying to get logistical things settled – canceling cable and appointments and getting forms submitted. I think by tomorrow Hana will be awake enough where we will need to be by her bedside more. We are all looking forward to this! Today we did spend time hanging up some of the cards she has received. Hopefully we don’t have to change rooms until we get to go upstairs! 

   
    
 

A Great Day Of Rest

Lots of people, many of them doctors, stopped to say how great Hana was doing. It feels good to hear this. Hana has been quiet and occasionally awake for a few moments. It does seem like being in her room too much kind of wakes her up or agitates her yet, you want to be there to comfort her when she does wake. It’s hard to find a balance.

I’m slowly learning more and more about the new world of the Berlin Heart. I know I said I would share more details but I am so exhausted and I think the past three weeks are catching up to me. I will share some pictures that I and others have taken.

  
The Berlin Heart is an external pump. They check it at least every hour using a flashlight and a mirror (for the underneath part) for any clots that may form. A clot could cause a stroke.

  
Hana has a lot going in and out of her body. Besides her breathing tube, she has some kind of NG tube for venting her stomach, 2 IVs, 2 arterial lines, a PICC line, a central line in her neck, a Foley catheter, 3 chest tubes and 2 cannulas for the Berlin Heart. All of these will go away, eventually, except the Berlin heart cannulas and she will probably keep her NG feeding tube until after transplant.

  
The red thing in the picture is the pump and it is red because that is Hana’s blood in it! It’s pretty amazing to see.

Out Of The OR

Hana is back in her room in the CVICU. The doctors and nurses are still settling her in but we did go into her room for a little while. It’s a little hard to see the thumping of her chest, which looks mechanical. For me that feels the hardest – not the three chest tubes and this pump holding her blood that comes out of her chest. Hana is doing well.

The surgeon talked to us after the surgery. He said things went well. Her heart has already reduced in size. They tried to reinflate her left lung but they were not able to. This was not really surprising since her left lung has been collapsed for so long. 

While Hana was in surgery they put in a larger (diameter) breathing tube. They put in a central line in her neck and another arterial line in the groin area. They pulled her NG tube. Hana is on a lot of medications they added epinephrine, nipride, and a few others, she is getting Nitric oxide and a blood transfusion. Her blood pressure is a little high. It will take some tinkering to get everything just right. The biggest concern is to just watch the right side of the heart – to make sure it doesn’t get overworked and to watch her bleeding.

I am relieved the surgery is over. I wish there were less concerns right now because I am exhausted and would love to sleep. Actually they said tonight would be a good night to get sleep, while Hana is still very sedated. They always say stuff like that. I didn’t listen much to that advice the last time, in February, I just thought they were crazy and just didn’t understand what it was like to go through something like this. And probably they don’t know, but they have witnessed a lot of people go through it. They were right. As Hana’s heart failure/transplant cardiologist said to me Friday, “This is not a sprint, it’s a marathon.”

When I went in next to Hana, I put my hand on her head and stood in awe. I told her she was amazing. It is amazing to me how much she has gone through, I don’t even know how to put it into words. 

Getting Ready 

Hana was awake this morning when I went in her room around 6:30. I talked with her and stayed until the shift change at 7am when they kick you out of the room to do report. Overall, she goes back and forth between being awake and sleeping. She looks a little sad when she is awake and I whisper to her that it’s going to get better soon.

Although she is on a cooling blanket, Hana sweats sometimes. This could be because of her diminished cardiac output. Her heart rate is also pretty low – I’ve seen it dip as low as 63. Occasionally her blood pressure also trends down, but in generally it’s been okay. But all of this still makes my heart rate and blood pressure rise.

Now they just finish getting ready, mostly last minute blood work. We wait. I’m sitting next to her bed and will stay until it’s time for her to go down to the OR.