First, all is well now. Today was my sister Therese’s last day here. We had a lot of fun, unfortunately her time her kind of ended on a dramatic note.

The pink Ikus has been problematic, as I’ve written previously. Today, Berlin Heart looked at the log files sent over the weekend and the assured the team that everything was working fine even though we were getting the “battery discharging” alarm. They instructed us to continue using battery power despite the alarm and to pay attention to the lights that show how much battery life is left. They said that because we plug in and out so often it is messing with the alarming system and we should actually be trying to use up the battery power before plugging back in. So, this is what we did.

We had some great scavenger hunts for butterflies and rainbows on the third floor. The nurse accompanied us to the trains on the first floor. In the late afternoon we took out the tricycle and did another scavenger hunt. The ten minute alarm sounded. Then the “discharging battery” alarm sounded and we silenced it as instructed and continued with our business but watching the battery lights closely. Then the nurse found as to accompany us and help push the Ikus. A few minutes later the Ikus started making a chirping noise. It was hard to tell where it was coming from.

The nurse said we’d better go back. We got held up by the feeding pump but we hurried back down the hall to the room. The nurse checked her pump and noticed it was not filling and emptying which means that the pump stopped. That’s right, the pump was no longer pumping Hana’s blood. The Ikus still sounded just like it always does, like an air compressor, but now it was chirping. The computer monitor no longer had a wave form showing the pumping activity.

The nurse, cool and collected, pulled out the hand pump, attached it and started pumping manually. Now, by this time another nurse or nurses had come in and out. I actually called out, “we need to turn on the backup!” One nurse monitored the filling and emptying of the pump so she could instruct faster or slower hand pumps. One nurse was starting the backup Ikus that is plugged in outside Hana’s room at all times. Another nurse started helping me get Hana hooked up to the monitor so we could see her heart rate, pulse, oxygen level, respiratory rate, blood pressure. Paul was calming Hana and we were playing the iPad.

Two fellows showed up and one took over hand pumping. The other started monitoring Hana. The attending cardiologist (and Berlin Heart expert) must have run because he seemed a bit out of breath. The nurse practitioner that specializes in the Berlin Heart showed up (the last two we had seem ten minutes prior). Someone brought the crash cart. Then, a lot of people started showing up because they got a emergency alert text (and it said we might have to be prepared for ECMO!!!! Yikes). A nurse, Doctor and fellow from the CVICU, a respiratory therapist and a bunch of other people who I don’t know all showed up.

Hana was hooked up to the backup Ikus very quickly. Everyone wanted to look at her pump to make sure there wasn’t an increase in deposits (a period of low flow can cause an increase in deposits). To make this long story short, they are going to monitor her deposits more closely overnight and we are not to unplug the backup Ikus until the new backup arrives tomorrow. The pink Ikus was able to be made into the temporary backup (with some tinkering). The people at Berlin Heart said they have never, ever heard a chirping noise, ever, so this will be a new one for them. Hana is completely fine and seemed more annoyed and maybe a bit scared by all the people in her room. I was pretty calm and not too worried because I knew, from my conversation with the cardiologist yesterday, that Hana’s heart would do just fine if the pump stopped. Still, you want what is supposed to be working to work! Paul was calm as well. Therese did great.

I have to say that our nurse was amazing. She had good sense and was poised and professional. She seemed alarmed, but not at all ruffled.

In hindsight, I wish I had requested we switch to the backup when we first started getting the dishcharge battery alarm. I think the allure of the pink Ikus clouded my judgement. If it had been a plain, boring Ikus I know I would have wanted to switch it out immediately!


8 thoughts on “Emergency

  1. Jesus Christ, that’s terrifying!!! I’m glad it ended well and I’m glad you all kept it together in alert mode, here’s hoping it doesn’t happen again!


  2. So happy that it all worked out ok and commend you all for not panicing Hana causing more issues. It is amazing how you are working through this situation so well.


  3. Wow, bet those Berlin Heart guys have some “splaining” to do! Glad my little cousin is Ok through all of that.


  4. How frightening!! So happy all is well and the Ikus switched out! It truly is the reaction of others that can cause unrest-it was great to see how everyone worked together and able to keep Hana calm.

    Now that you’ve had the drill, may you have smooth sailing until transplant.


  5. Wow. That sure was some adventurous day for everyone involved. Professionals all around. Praying for all your great crew!!!šŸ’œšŸ’


  6. Kathleen, I’ve been following your family’s journey as you wait for Hana’s heart. I am sure you have a million things you need to do, so I’ll just keep it short. Your posts have been incredibly inspirational and the courage and grace with which you have handled this very difficult time is beautiful. You haven’t let the fear and worry prevent you from enjoying every moment with Hana and you have kept her childhood as normal and untouched as possible by her medical condition. Great job!! They say that God never gives you more than you can handle. He must think you are a badass. : ) But know that Hana, Paul and you are in our daily prayers. Love, Judy

    Date: Tue, 8 Mar 2016 06:23:30 +0000 To: judyfann@hotmail.com


  7. ah yes! “the allure of pink” who hasn’t had their head turned by a pretty thing? :)Hang in there mom –


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