Laura's Story\

Laura’s Story – Part 24 – Quality of Life

Once Laura was on high-flow, we were able to do considerably more with her. She was easier to move around and we were able to really get going with her physio. Laura was over 4 months old and couldn’t hold her head up on her own, couldn’t sit without support, and couldn’t roll over. Mentally, we could tell that she was on track but physically she was just not getting it – to be fair it had only been about 2 weeks of her life where she was able to try.

We created a schedule for her so that if we were ever away the nurses would have an idea of what they could do with her. Many of the kids on the unit watched a lot of TV but as an Elementary School Teacher I understand the devastating effects television at a young age can have on a child’s attention so we decided not to let her watch anything. No screen time at all when in the hospital isn’t easy but but if you’re there all the time it’s not too bad. Her schedule was not timed but rather a list of things she could do plus her waking routine and going to sleep routine. She had story time, play time, music and dance time, physio, OT, meds, and nap time – it was a pretty good life!

By the beginning of February, Laura was able to support her own head while we were holding her but not quite yet while sitting. She could sit with the support of a nursing pillow and loved playing – not with toys…but with coffee cups. Yep – she is mine.

She still looked like herself but as the days went on, she was beginning to look like a much healthier version – Laura 2.0. We had never seen her look so alert and alive. She had tons of energy and wasn’t sleeping the entire day away anymore. When we met with transplant back in October, they talked to us about quality of life. The questions about what we wanted Laura’s life to be like – this was the answer. She was vibrant and developing so quickly – this is what we hoped transplant could give her.

We had now been doing most of Laura’s care for a couple of weeks – we drew up her meds and administered them, we got her feeds ready (still formula for the chylothorax) and started them through her NJ tube (this is similar to an NG feeding tube but bypasses the stomach and heads straight for the top of the intestines). Meds were insane – she was receiving so many it was crazy – even the nurses couldn’t believe the huge amount of different medications she was on. She had meds every two hours – usually between 2-5 different meds but at 08:00 and 20:00 it was more like 7-9 depending on the day. At this point, she was receiving 17 different meds.

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20:00 meds
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Drawing up the meds

On February 3rd, 2017 we had another transition meeting. We knew that this day was coming as it was becoming weirder and weirder that Laura was still in the ICU – we had many people ask why we were there – Laura was doing really well. The best answer was that neither we nor the team felt comfortable moving Laura until she was doing amazing. We transferred her before and it did not go well… We also knew that things outside the unit moved a little slower so we wanted to get her ventilatory support down, get her feeds going through NG (into her stomach) and get her off all her IV meds (she was still receiving Lasix IV) before moving out of the PCICU.

The meeting went well – it was just the people we knew well – transplant and people from the PCICU. We discussed Laura’s course and the things yet to be done. While up on the floors in the regular cardiac ward we would need to continue weaning Laura’s high flow and CPAP (which she was on at night), get set up with home CPAP, get set up with tube feeds for home and get her off her diuretics. We would also have to come up with a plan for the wean of her narcotics. Simon figured we would need to be on the ward for about two weeks and then we could be discharged!

After almost 5 months at the Stollery, we were discussing going home. It was hard to digest – fear and excitement battled each other.

For transplant patients, it is customary for them to be discharged from hospital to Edmonton for 3 months. This would mean that Laura wouldn’t have to stay in hospital but she would be staying with us in the apartment in Edmonton so that she could be closely monitored. In preparation for this, A.J’s family had brought the playpen, stroller and a few other things the weekend before. Then we heard the news…Simon said that he didn’t think we’d need to stay in Edmonton at all – we could head straight home to Saskatchewan. We would be transferred to the hospital in Saskatoon for a couple of days before heading all the way home to get home feeds set up but that was it. Laura would soon be sleeping in the nursery we prepared for her more than half a year ago.

Over the weekend, the PCICU intensivists decided to take a leap and pull Laura’s NJ tube back to an NG – although she kind of beat them to the punch and did it herself(with my help if I’m being honest – I may have stepped on her NJ tube…). Laura tolerated her NG feeds really well which was a relief. We also switched her from IV lasix to oral lasix and got to full days on high flow!

The night before we were going to be moving up to the ward I made a request that Laura be tried on high-flow for 24 hours. She had not been on that little ventilatory support overnight since she was 4 days old. Gonzalo (I talked about him way back on the darkest hours post) agreed with me when I said that it made sense to try it while on the unit with RT’s right there. He said we’d try but if she struggled even a little they’d put her back on CPAP. His most famous line with us was

I don’t trust Laura.

That was fair – he always seemed to be on service when she tricked us into thinking she was healthy right before a major event. Besides, we didn’t really trust her either.

Laura did amazingly and stayed on high-flow all night. We were officially done with CPAP for the first time in months.

On February 7th, 2017 we said goodbye to the team and made the move upstairs. It was really difficult saying goodbye but we knew that this was the next step that we had to take in order to get home.

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All my bags are packed, I’m ready to go…

 

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