Well I wrote a whole long post about today and then the WordPress app stopped working again on my phone. But I’ll summarize and then I have to get sleep!
Hana’s high heart rate was caused by dehydration and low electrolytes. She was vomiting a lot today and wasn’t keeping her meds down (a common problem with Berlin Heart kids). They stopped her feeds and put her on IV fluids. After that she perked up.
The road is rocky, in the beginning, they tell me. Hopefully we can figure out a medication routine and a feeding regiment that works for Hana right now. It has had ups and downs but I think we are moving in the right direction. Thank goodness my mom is still here!
Paul and I went to our house last night. We picked up Poppy, our dog, and spent some time with her. It was my first time spending a night at home in 40 nights. At times, it was really hard to be home without Hana. It was sometimes sad and empty and sometimes that quiet emptiness creates the space to really feel sad and scared.
My mom stayed overnight with Hana. When we got to the hospital this morning they had just finished rounds. Hana’s heart rate has been high – in the 160s. They don’t know why. It has made me very worried. Hana finished her antibiotics last night so then you wonder if there is still some hidden infection, possibly in that lower lobe of her left lung. Her white blood cell count is up but that could be a reaction to the steroids she finished. Her temperature is up a little bit. But this could be withdrawal from Ativan. She is also throwing up – 3 or 4 times today, maybe it’s the persantine or the Berlin Heart pressing on her stomach or the volume of feeds or heart failure. Her other blood work results do not really indicate infection.
Today Hana had PT/OT and then after a short break they took out Hana’s surgical staples, chest tube and PICC line (they gave her morphine first). The chest tube removal caused a pneumothorax (a pocket of air, revealed after an X-ray) so they put Hana back on oxygen. They had to poke her for bloodwork and they need bloodwork tomorrow too so they just put in an IV so they don’t have to poke her tomorrow. They also changed her Berlin Heart dressing and had the doctor come in to look at the site to make sure they felt satisfied with the skin around the area. Then they did an EKG and an echocardiogram because they were worried about her high heart rate. It was a very busy day and poor Hana went through a lot plus she must have felt lousy with all the vomiting.
I am exhausted – mentally and emotionally. I think things are catching up to me and I need to do a better job at taking care of myself.
Day 41 in the hospital, Day 23 post-Berlin Heart, Day 14 on the transplant list.
It has been very busy here. We moved into our new room where we can eat and drink and sleep and I can pump. So what happens is we never leave! I was jogging every other day and since we’ve moved to 3 West, I haven’t been out once.
One thing that makes it busy is Hana. She is awake more and feeling better each day so now we do more with her. We get her out of bed to work on her strength and just to play and hold her. She has Occupational Therapy, Physical Therapy, Speech Therapy and she still has almost daily blood draws and dressing changes of her Berlin Heart cannula.
Hana is drinking a little bit from her Milk Bear – maybe 15-20 mL a few times a day. Today she tasted some cheese puffs (supervised by the OT). She can sit for periods of time without support. She is rolling over in bed and sitting on her knees.
Hana still has one chest tube which she will hopefully get out tomorrow with her surgical staples. She is trying to wean from the nasal cannula but sometimes when she sleeps they have to put them back on with a tiny bit of oxygen. She will hopefully be done tonight with her 10-day course of antibiotics and her steroids (for high fibrinogen). Lastly we hope her anti-coagulation levels become stable so she doesn’t need to get poked for blood draws so often. But really, what we need is for a heart to become available soon, which is a hard thing to wish for.
The most exciting development has been Hana’s ability to leave her hospital room! It is quite a production to go out in these field trips but it’s possible and encouraged (but only with a nurse). Hana has to be hooked up to a portable monitor. So far, she’s been able to go without taking oxygen. We preferably need to go at a time when we don’t have to take her feeding pump or IV pump. She has to wear a mask, which she hates, but I think she loves getting out! Her first outing was just a lap around the third floor but today she got to go to the pre-school. She did throw up a fair amount when we got there, probably from crying because she didn’t like the mask, but overall I think she loved being in a new environment and seeing other kids!
Christmas is almost over here. It’s been a pretty good day. We woke up late – I hardly slept between going to midnight mass and then all the interruptions and noises I’m not used to. There is someone coming in the room many times a night to do things – give meds, adjust feeds, weigh Hana at 6:30am. These are things I used to do. Every time Hana’s vital sign alarm would go off I would get up to look at it. I was worried about her nasal cannula coming out of her nose and she would desat. But it was usually her respiration rate being too fast. Which is the reason we brought Hana to the hospital in the first place, 36 days ago.
Other than her respiration rate being a bit high, Hana felt sweaty to me in the evening. She had to get some blood drawn today which did not go well. It’s a long story but they ended up wasting more than 3mL of blood and they had to come and draw on two separate occasions and they had to poke her five or six times. They just didn’t have their act together and more blood would have been wasted if I didn’t insist that they check with the lab. Then they had to place two NG tubes. They couldn’t pull her NJ tube back to her stomach without doing an X-ray to check placement which seemed ridiculous to me and no one had a good explanation. So they just placed a whole new tube. Then the crushed aspirin clogged the NG tube so bad they had to place another one. I was irritated that they weren’t more careful about crushing the aspirin into a fine powder. Then they were going to do an X-ray to check placement of the second NG tube which I thought was ridiculous and the doctor that was on agreed to make an exception so in the end Hana was spared unnecessary radiation. She has probably been exposed to more radiation than most people will be in their whole life.
But it was still a nice day despite my complaints! They rounded at 7:55am! I was in my pajamas! We opened gifts in two shifts. Got Hana out of bed twice and set off the Berlin Heart alarm seven times when we kinked it for a second. We got some very excellent gifts – thank you to everyone who sent gifts and cards and packages and well wishes! Our friends and neighbors brought us some excellent Christmas dinner! Overall, it was a nice day!
Today Hana got moved to the step down unit on 3 West! They turned off her last drip at 3am and seemed to be doing fine without the dexmedetomidine. They rounded early on Hana so that we could move the transfer process along. Around 11am the CVICU team did their review of Hana with the team upstairs. Then we started rolling around noon. I was sad to say goodbye to the CVICU because I have spent some of the most intense moments of my life there and it feels like a part of me, but I’m glad Hana is ready to be out of intensive care.
On 3 West, the cardiac intermediate unit, you can eat and sleep in the rooms. There is a bathroom and shower in the room as well as a closet and drawers. Hana has her own room because she is pre-transplant and needs to stay healthy. This is where we will be living until she gets her transplant.
We moved all our stuff from our sleep room up to her room. We took down all the decorations from her CVICU room and moved everything up to the new room. Then we spent the rest of the day organizing and decorating for Christmas. We put up the butterfly Christmas tree my sister sent and opened packages and put the presents around the tree. We put up lights, listened to Christmas music and watched The Grinch Who Stole Christmas.
Hana seemed like so much more her normal self. It was so great to see her so animated! We are happy to be on 3 West and just in time for Christmas!
It was another good day here. If we can wean Hana off the dexmedetomidine then we can move to the floor. That could happen as early as tomorrow! Hana had more PT/OT which involved time on the floor. She also got to drink out of her milk bear. They did make one adjustment to her Berlin Heart / they increased the rate that it is pumping from 85 to 90.
Today Santa came through the hospital and we got a quick picture!
Today was another good day. Hana is still a bit sleepy and her hematocrit was low (19) so they did a blood transfusion. That perked her up a bit in the afternoon but her overall energy is still low, which I think is still fine at this point. They gave her albumin today too. They are hoping to get Hana off the 1/4 L of oxygen she is still getting but so far her O2 level starts to go down sometimes without it.
They added a 1/4 clonidine patch to hopefully help her wean faster off her last drip – the dexmedetomidine. They didn’t turn it down until 3:30 in the afternoon, so it had been almost 30 hours since the last time they turned it down by 10%. I noticed that the gagging and retching did not appear today like it has been the last few days. Maybe it’s been withdrawal causing the gagging.
I like hearing the fellows come up with their plan and then hearing the rest of the team explain why something is or isn’t a good decision. Every once in a while I know something the fellow doesn’t know and I worry that either they haven’t spent enough time in the CVICU or I’ve spent too much time in the CVICU.
Today’s highlight was holding Hana for a while and then getting on the floor with her again for some play.
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!
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!
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.