When we woke up in the morning, A.J called the hospital to see how the night had gone – we were so thankful to be able to call when we were away from the hospital to receive updates. Laura had been stable for most of the night – her blood pressure had dipped a few times but after giving her some volume (fluid to help her circulatory system out a bit- if her hemoglobin was running on the low side she’d get red blood cells, otherwise she received clear fluid pushed through her IV) her pressures stabilized.
Over the course of the day, Laura’s blood pressure stabilized with the help of medications (epinepherine, milrinone and norepinepherine) and her heart rhythm normalized (she had been having regular PVC’s which caused the arythmia that led to her first arrest – she was started on amiodarone to control them).
For the first time in days, we heard the words
Laura is stable on ECMO.
This was such a big milestone for her because for the first couple of days post-arrest she just could not be stabilized. We knew we had overcome the first of many hurdles when, for the first time, we saw her nurse sit down at his desk and chart. It is silly to love the look of a nurse sitting but until today, the nurses had been far too busy to sit down. We talked and laughed and Aaron, the nurse, joined us in poking fun at Laura’s lack of a neck and high, round face. You have to be able to have a sense of humour in these dark times – and let’s be honest – her face looked pretty funny with all that fluid on board!
I think one of the most important qualities a nurse or health care worker of any kind can possess is the understanding that although the families are going through a tough time, they are still human. We still needed to eat, sleep, pump (okay that was only me;) ), and LAUGH!
It is not offensive to tell a joke here and there or to laugh when we poke fun at our daughter.
Yes, for an outsider it may seem crazy that we can laugh while she is so sick but after 48 hours of dealing with it – we didn’t need any more dark and dreary.
On this day something else really important happened – we met the amazing doctor who would become so important to Laura and to us – Dr. Lindsay. She was the intensivist on for the week and she was spectacular – I have never before seen someone with such an intense command of a room. It was clear that she was in charge and that she knew exactly what needed to be done – she thrives in intense situations. Later this week, we would request that she become our primary intensivist – meaning that she would oversee Laura’s care for the remainder of her time in the PCICU. At the time we didn’t realize just how long that would be but I will never regret our decision in having her be this person for Laura. To see someone with the talent and knowledge that she possessed but also carrying a heart of gold is quite impressive. She is a doctor and a mother and both of these things together make for an incredible person.
The next day we began the process of weaning the flows on the ECMO circuit. We went down to 90 mls/kg from 100 ml/kg (just think of these numbers as percentage of support – it’s a bit more complex than that but it will give you an idea of where we’re at). She was started on a diuretic, lasix, to help her pee off some of the fluid that she had accumulated. Starting diuretics is a big step as if it were started before she was stable, her system wouldn’t be able to handle it.
Over the course of the day her flows were weaned to 80 and then to 60. She tolerated the flows of 60 quite well for a couple of hours, meaning her pressures stayed in the “safe zone.” In the evening her pressures began to drop so her flows were raised back up to 75 – we would try again in the morning. That evening Laura also woke up and opened her eyes – it was great to see her eyes but we knew that this would be too much on her system –
she had to use all her energy to repair her broken heart
…so she was sedated and medically paralyzed to keep her stable.
Thursday, September 29th, 2016. Happy birthday mom! This was not exactly the birthday present my mom was hoping for but we were so glad to have her with us in Edmonton.
In the morning, they attempted to drop Laura’s flows to 50 again but she did not tolerate it. This was beginning to become a problem as Laura should have been able to be taken off ECMO by this point. The plan was to take Laura down to the hybrid OR (an OR suite that also has imaging capabilities) for Surgical procedure #4 – an angiography of her coronaries.
She was taken in at noon and at around 15:30, the surgeon came to tell us that the pictures looked good – there was no visible narrowing in the coronaries. While he was in there, he also did another sternal cleanout, removed the LA vent from ECMO (one of the cannulas that was used to help off-load some of the pressure from her left atrium) and performed a minor Open Heart Surgery (this is getting silly…I would never have considered an open heart surgery minor before this – OHS number 3) – right pulmonary artery arterioplasy.
That evening they turned her flows down to 50 mls/kg and she tolerated it much better this time. It would be left there overnight.
Friday, September 30th, 2016. The big day!
On this day Laura would be taken off ECMO!
They were to perform the procedure (#5 if you’re keeping track) on the unit so that she didn’t have to be transported again. The surgeon would disconnect the ECMO circuit but would leave the cannulas that were attached to her atria in place and leave her sternum open just in case she had to be put back on the circuit.
Coming off ECMO is scary. When we were first introduced to the circuit it was terrifying but it became a security blanket – it was okay that Laura’s heart was tired because this machine was doing all the work for her. Coming off meant that she’d have to take on this work on her own – was she really strong enough?
Once taken off, the answer was pretty clear – no. No she was not ready. Does this mean we put her back on? No again. With all the risk that comes along with ECMO, you don’t go on the circuit unless absolutely necessary – her heart was tired – it had been through a lot in the last 5 days but we all believed it would heal. She was put on very high doses of Epinepherine, Norepinipherine, Milrinone and nitric. These allowed her to stabilize her pressures and her heart began to pump blood without the help of ECMO. It was pretty touch and go all night but she remained off ECMO which is great news.
For the next 5 days,
Laura’s only job was to pee.
This became a very familiar greeting in the morning. Dr. Lindsay would come up for rounds and say “she just needs to pee” and then carry on with the nit picky details that come along with ICU life. She was started on Lasix (the diuretic) and aldactazide(a diuretic that works a little differently – those who are medically inclined it is a potassium-sparing diuretic). She weaned off the nor-epinepherine and came down on her doses of epinepherine and milrinone. By the fifth day she was beginning to look like her old self again!
Thursday, October 6, 2016.
Today, 11 days after her cardiac arrest and ECMO cannulation, Laura’s chest was closed.
This was such a happy day for us as it was the first big step towards recovery – the next step – wean off the meds and head towards extubation!
Over the next couple of days her epinepherine, nitric and rate on her ventilator were weaned (reduced) and we began the move towards extubation. Unfortunately, as we gave Laura more responsibility to breath on her own we encountered an old problem – her left lung was collapsing. Right…
We had almost forgotten that before all of this started, her left lung had been a thorn in our side.
She had a bronchoscopy (procedure number 7) to see if there was something wrong inside her lungs that was causing her lung to collapse – it came back clear.
With healthy, working lungs the solution became clear – she would need to have the surgery to pin her diaphragm down and out of the way of her lung – this is called a Diaphragm Plication. She was taken to the OR for her 4th surgery. It went well but they were not able to recruit the lung – it may just take some time. Time was something that we were thankful to have so we didn’t complain.
Friday, October 14th, 2016. After a couple of weeks of ups, we should have known that another big hurdle was on it’s way…