When people hear that Laura spent the first 5.5 months of her life in the hospital, most envision a crib in a room with a few chairs to sit in and a closet for all our stuff. They see toys and clowns and everything else that they think goes along with a children’s hospital.
This couldn’t be further from the truth for her first 5 months in hospital – she was in the PCICU for most of that time. The unit was long and narrow with a nurses station taking up roughly 1/3rd of the unit. There were 8 beds in the main room and 2 isolation rooms off to one side for children who were under isolation protocols. Each bed space had room for one bed/crib, the supply cart, the monitor, and a med pump stand or two. There was also room for 2 office chairs to squeeze in beside the bed so long as you didn’t need anything else to be there.
Each morning, we would arrive to the unit, call in to let them know who we were, wash our hands at the designated sink and then enter the unit and head for whatever bed Laura was in. After her first surgery she was in bed #8 which is the first when you walk through the door. For the next 4 months she was in bed #1 – the furthest from the door (so we had to walk past all of the other kiddos to get to her) and then for the last weeks, bed #4 which was pretty much smack dab in the middle. We would track down a couple of office chairs that weren’t currently in use and then we’d make ourselves comfortable at her bedside (for the first little while the nurse would get them for us but as we became veterans – we no longer bothered them for things like that). We would ask how the night went and then talk about whatever the nurse had done that week, the weather, healthcare in Canada and the U.S, sick children, heart defects, medications, books, whatever we could think of really. The nurses were always amazing – we had the opportunity to meet so many fantastic individuals and really get to know them thanks to the 1 on 1 care in the ICU. For the last little while we were taking care of Laura fully so the nurse would chart, help other patients, and chat with us. Of course they had to run to get the meds that were in lock-up (like methadone – for obvious reasons) and had to double check our med draws but there wasn’t an awful lot of excitement with Laura in those last days.
That first vision that I spoke of – the room with the view and toys and clowns and whatever else – that was the floors. 4C – the cardiac step-down unit. It was on February 7th, 2017 that we began our transition from the dark, cold PCICU that we had grown to love, to the regular ward.
We packed up all of Laura’s things and with one of our absolute favourite nurses, J, in tow, we headed up to the 4th floor to the I.C.E unit. If you remember back to Laura’s Story – Part 11 – the darkest hour – part II this was the place we watched as all signs of life left Laura’s body as she went into her second cardiac arrest. To say that we were nervous about being back there would be an understatement. We were relieved when we arrived to the unit and found out that Laura would be in bed 2, not bed 1 were she had arrested. It’s not as if we are superstitious people but it would have been very strange to be back there.
It was funny how a weekend had changed so much – we had to explain that Laura was now on high-flow exclusively and wouldn’t be requiring RT’s at night to switch her over to CPAP. She was now being fed into her tummy on a continuous pump (she was being fed all of the time rather than getting it all at once) and she was off all I.V. medications. Her PICC line had been pulled and she was left with only her broviac line (the surgically implanted line) in her right thigh.
Every 4 hours or so the RT’s would come into the ICE unit to check on the kids to see how they were doing – we were always weirdly excited for them to come because they were the same people from the PCICU and it was nice to see some familiar faces.
After only a couple of hours up on the ward, one of the transplant docs came to see how things were going. Dr K was amazing – he was always willing to change things as necessary and was not afraid of Laura – an asset not many doctors had at this point. He wasn’t with her at her worst so he was able to see her for the healthy little girl she was now. I mentioned that my only concern was that I thought she was a bit dry (dehydrated) as her fontanel was a bit sunken and her heart rate was higher than the day before. He decided to change her diuretic schedule from 4 times daily to 3 times daily to see if that helped. I could tell at this moment that Laura was in good hands – he was willing to make a change that made sense – maybe we wouldn’t be moving so slowly after all.
That evening, after we gave Laura her bath and got her to sleep, we headed back to the apartment. In the ICE room there are chairs that recline but I was not interested in attempting to sleep in one of those.
After a couple of days, it was determined that Laura was ready to be sent to a regular room! This meant a cot for me to sleep in and more space for us in general. We would be sharing the room with one other family but there was plenty of space for everyone. We loved the freedom to play with Laura, change her, feed her (through her feeding tube), read her stories and sing songs whenever we wanted. For the first time in Laura’s life, we finally felt like proper parents. I was able to sleep in the same place as my daughter for the first time the day before she turned 5 months old.
My life at the hospital was weird – I never really went outside and I was in the hospital all day and all night. Our day was very determined by Laura’s med schedule – every 2 hours she received medications and every 3 hours I had to get her feeds ready – so usually there was something to do every hour. Overnight, I woke up to my alarm every 2 hours to walk down the hall, draw up Laura’s meds, have the nurse check them and then give them to her and try and get some more sleep before the next med time. The nurses always offered to do it for me but I wanted to be prepared for when we would take her home – this was to be our new normal for a while.
Laura’s feeds were now being run in boluses meaning they happened all at once like a regular meal – while at the Stollery we got to feeds every 3 hours over 45 minutes – I ended up doing the wean by myself as the nurses often didn’t remember where we were at in the wean.
The longer we were on 4C the more we became anxious to go home. It was difficult getting used to the different level of care and training outside of the PCICU. I met nurses on the ward who didn’t know how to properly read an ECG so I would have to tell them when Laura was having a PVC and explain how I knew it was a PVC and not a PAC (Premature atrial contraction). It took some getting used to for the nurses too – they didn’t expect that I would already know how to draw up and administer all of Laura’s meds and injections – they were surprised also, that we already did her feeds. Not everyone that arrives on the floors spent 5 months (nearly) in the ICU before their arrival – in fact most spent only a couple days or weeks there.
The nurses were amazing – they had to care for 4 or 5 babies and they had to try to keep up with all of them. They were kind and loved their jobs – but they weren’t OUR nurses. It was hard for us to trust them with Laura because they just didn’t know what she had been through – sometimes they didn’t have time to read her chart because they had so many children under their care so they’d skim it and not really understand the details. It was frustrating and it just made me want to take her home – I knew her far better than the staff did and I was doing all of her care anyways.
She gradually was able to come off oxygen and on February 14th, 2017 for the first time since she was 4 days old, Laura came off oxygen. It was amazing to see her face! She had also been taken off diuretics (some of the docs were shocked and terrified but Dr K was confident and had discontinued them completely) for the first time in her life. Laura was down to a measly 14 medications given every 2 hours with the exception of 04:00 and 16:00 – and boy did I appreciate that 4 hour sleep from 02:00 to 06:00!
On February 15th, 2017 Laura was sent to the OR to have her broviac removed and for the first time in her entire life – I was allowed to carry her away from her bedside to the OR. In over 5 months I had never held Laura anywhere that her oxygen and lines couldn’t reach – it was the most amazing feeling. It didn’t matter that we were headed for the OR again – I was carrying my baby and it was glorious. I carried her into the operating room and held her as they attempted to put her to sleep – it took 3 times more than the anesthesiologist was planning to use but they were finally able to knock her out. 1 hour later, she was back in her room on a tiny amount of oxygen which we removed a couple of hours later. We were excited to see her without lines but then we realized she had a line on her hand – of course she needed a line – how else would they have sedated her for the broviac removal? Whoops – overlooked that one. We would keep her IV in her hand until we arrived in Saskatoon as they require an IV for transport just in case. One little IV in her hand was not a big deal – so it didn’t bother us.
We found out that we may be leaving Edmonton the NEXT DAY and so we took advantage of our new found freedom and took Laura for a walk OUTSIDE (she had never been outside in her whole life!) and took her down to the PCICU to visit the staff and say goodbye.
It was time to prepare for the journey back to Saskatchewan – we never thought this day would come…