I woke up on February 17th, 2017 not knowing what to expect. I was trying my best to stay positive and put the previous days’ events behind me but it wasn’t easy. I knew that today I would be able to meet up with the Pediatric Cardiologist and begin forming a plan for Laura. In the meantime, there were meds and feeds to get going.
Laura had done well with the transition to her new home – she didn’t seem to mind that the walls were white and that it looked more like an old war hospital than a pediatric wing. There were 3 other children in the room that we were in and there were curtains in between the bed spaces. The child next to Laura had been in Edmonton and I knew her mother while we were there so that was a pleasant surprise – they were preparing to head home in the next few days.
The child a couple of beds over had some sort of respiratory infection – the poor thing was hacking and wheezing like crazy. I felt bad for the baby and his mother but if I’m being completely honest here – I was mostly upset that they would put my immune-compromised daughter in the same room as a child with a respiratory illness. In Edmonton, that child would surely have been in isolation so as not to get any of the other children sick. Strike 1 for the day.
I looked everywhere in our bed space for hand sanitizer and all the bottles were empty… strike 2. I had officially become that crazy person who needed to see everyone wash their hands before coming near Laura – one of the nurses assured me she had washed her hands at the nurses station to which I replied that wasn’t good enough. As much as I’d love to trust them, Laura’s health was more important.
At 07:30 I met Laura’s nurse for the day – she was lovely! She was in her mid to late twenties and she was very caring and understanding. She wanted to make sure that I was happy with everything and that we had everything we needed. She came up to me a little while later – after having tended to the other children in her care – to ask about Laura’s history. She had begun reading the chart and couldn’t believe her eyes – she had questions about ECMO (she didn’t really know what it was – there is no program in Saskatoon so that’s completely fair), berlin hearts, and what it was like living in Edmonton for 5 months. For the first time since our arrival, I felt comfortable. This was the first person who actually showed an interest in learning Laura’s history. It’s amazing how big a difference a nurse who shows an interest and a willingness to learn can make. She admittedly didn’t know an awful lot about cardiac care but was happy to learn all that she could. They dealt with many cardiac kiddos but they always got them right before they went home so there wasn’t a lot of “cardiac” related care involved – more just work with feeding tubes and such.
At about 09:00 the cardiologist came by. Dr. K. The most amazing man – hilarious, honest and caring. He had been working at RUH in the pediatric cardiology practice for a long time and knew what he was doing. He looked Laura over and told me he was so excited to meet her after all this time. He then asked me how long we wanted to stay inpatient. I was a bit taken aback by the question. I told him that I’d love to leave as soon as possible and he suggested we leave the next morning! He had spoken with Dr Urshel from Edmonton who had assured him that we had already had all of our at-home training and that we would be more than ready to take over Laura’s care. He would have to call the pharmacist to set up prescriptions and find someone who was able to prescribe methadone (not every physician can) but he didn’t see why we couldn’t get going first thing in the morning after Laura’s labs.
Suddenly that day became crazy. I called A.J and he decided to head home to clean up for Laura’s arrival rather than coming to the hospital – I was thankful for that. I met with the pharmacist a few times and then I met with the SLP who went over some tips for getting Laura to eat orally – at this point we had been trying every bottle nipple known to man and Laura just screamed every time one came near her. We also got set up with a feeding pump through Sask Abilities and met with one of the Cardiac Nurses. Bless her soul. The thought of us leaving after 1 day in Saskatoon on a long weekend nearly sent HER into cardiac arrest! To say she was hesitant would be an understatement – she didn’t know us and here’s her very strong reasoning for not wanting us to leave yet:
- Laura was only taken off oxygen 4 days prior for the first time ever
- Laura had a mystery anyphalactic allergy
- Laura had coded 3 times
- It was a long weekend and all pharmacies were closed
Let’s be honest here – I was really annoyed with her for not trusting us to take Laura home but she had some pretty solid reasons. Dr. K assured her all would be fine and she set to making sure we had everything we needed. We would be coming in for our first outpatient appointment and lab work the next week.
Once all the formalities were out of the way, Laura was taken off her monitor for good and we were able to take her around the hospital and hang out a bit.
That evening, my mom and dad offered to babysit Laura for the first time while we ran to Toys R Us to get a few things – this had all happened so fast that we didn’t even have diapers or anything ready for having a baby at home. We also went to the medical supply store to buy gallons of hand sanitizer and ng tube supplies.
When we arrived back at the hospital, the nurse (the awesome one) showed me how to put in Laura’s NG tube and it wasn’t nearly as difficult as I had expected! A twist here and there and voila you have an NG tube. I pulled back to make sure it was in place and it was – success on the first try 🙂
I went to sleep that night in anticipation of the day we had been waiting for since September 11th.
February 18th, 2017.
Today, our baby girl was coming home!
Laura had her blood drawn at 08:00 and then we waited for pharmacy and the cardiologist to come by to sign off on us leaving. By 10:30 we got our discharge notes and A.J headed to get the car. I fed Laura before we left so that we wouldn’t have to worry about it for another 3 hours. As A.J came in to get the last load of stuff for the vehicle Laura threw up ALL OVER ME! Excellent – this was the best possible moment for her first huge throw-up of her life…
So instead of the lovely “coming home” outfit I had picked out, Laura was coming home in last night’s sleeper and I was wearing A.J’s jacket with nothing underneath – very glamorous – welcome to motherhood!
We left the hospital shortly after and it was the strangest thing buckling Laura into her car seat. Then the best thing happened – Laura LOVED her car seat. She was clearly very excited to be coming home. It was time to start a new chapter of our lives…