Two Weeks With A Berlin Heart

Today marks two weeks since Hana’s Berlin Heart was implanted. Despite the rocky road, it’s been a relief overall.

Today Hana got out of bed again with me holding her on a mat on the floor. She stayed there for two hours! She tried to stand up several times especially when she saw our friend Judy walk in the door! She even sat calmly on my leg when a nurse with the Vascular Access Team came in to draw blood and ended up just putting in a new IV. She was the most amazing person I’ve seen poke Hana with a needle and she admitted that she loved going around getting clean sticks on people, especially the more challenging kids.

Hana had to get more blood drawn because they keep messing up her blood draws. Hana has very labor intensive (in the lab) blood work to test her anti-coagulation, so that blood clots do not form in the Berlin Heart. Hana gets Heparin, aspirin, and persantine to keep her blood from clotting (too much, it still has to clot some). Unfortunately, they use heparin mixed with saline to flush the lines (PICC line, arterial line) coming out of Hana that can also draw blood. This is standard practice. That heparin adheres to the inside of the lines and contaminates the blood drawn to test for anti-coagulation. It’s fine for other blood work, but not this specific, labor intensive blood work that also requires a LOT of blood. Some nurses keep taking the blood from the wrong place, despite the sign in her room and the blood work order in the computer system. This is frustrating and when we try to mention it some nurses just look at us like we are crazy. The nurses that know, don’t need it mentioned. But when they don’t know they have to draw the blood again and the phlebotomists never get a successful stick. They poke and dig and Hana cries. Once, a phlebotomist tried to pull up Hana’s PICC line dressing to get a stick and the nurse got really upset. 

Not all nurses can have Hana as a patient. They have to be trained specifically on the Berlin Heart. That means we never have travel nurses, even if they’ve been trained with Berlin Hearts at other hospitals. Only nurses that have been on staff for more than a year can train on the Berlin Heart. Since there hasn’t been a Berlin Heart patient in a while (a couple of months) a lot of nurses want to get their training in, so Hana often has two nurses. It’s been good for me because I get to overhear a lot about the Berlin Heart.

It’s been a good day! Thank you for all the cards and packages!


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!


Diagnosis Of Exclusion 

Hana still has a fever. It’s come down with Tylenol but then it creeps back up. Hana’s respiration rate has been rather fast, her heart rate a little higher and her blood pressure has been low. For her blood pressure they are removing the clonidine patch and holding her carvedilol and enalapril for several hours. 

Now the question is why she has a fever. It is a diagnosis of exclusion by checking everything they can think of. Her urine culture hasn’t started growing bacteria, they haven’t heard about an infected PICC line, they will do a CT scan today to check her Berlin Heart for abscesses, they are checking for skin break down or anything going on in her ears, mouth, diaper area. They are contemplating a drug fever. They will do an echocardiogram to check the right side of her heart and do a BNP test (blood drawl) to check her heart failure. It could be, although unlikely, a heart failure fever.

This makes me want to cry – a lot. It feels very scary. There is so much that is unknown, but I guess that is how life can be. I’m glad my mom is still here. Paul and I both agree that we don’t know what we would do without her.

Thank you to everyone! I don’t always get a chance to respond every time someone reaches out but we are very appreciative.


Another Fever

Just after I returned to Hana’s room just after writing the last post, I learned that she had spiked a fever (102.4). Now they are culturing her PICC line for infection and collecting a urine sample to culture for a UTI. I’m hoping for a UTI or it turns out to be nothing. These things always make my heart plummet. But we have to take it as it comes. It’s a roller coaster.


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.


Moving Along

Hana’s progress is moving along. They took off the CPAP mask and switched to high flow. Tomorrow morning she will hopefully get switched to regular nasal cannula. She is still weaning from the versed and they will continue to turn that down every six hours when she gets a dose of Ativan. They will start weaning the precedex tomorrow which will be the last drip to take off. This can cause low heart rate so they will have to watch her carefully when they start to wean her and they are starting her carvedilol today. 

Hana is actually getting bored! She is using her voice a bit and even smiling! We bought a ukulele yesterday and are starting to play for her. She doesn’t seem satisfied with much – I think she wants to get out of bed! The physical therapist and occupational therapist came by today and started to do a few things with her, like get her sitting up, which is very wobbly and not yet possible without support. Hopefully soon!

Thank you for all the wonderful support! It’s a little hard to believe that Christmas is so soon!