Laura had come out of surgery and been taken off of the LVAD that was helping her left ventricle do it’s job. For the first time in a couple of weeks, Laura was doing really well! We read to her and she even began some occupational therapy by holding onto little toys – it is silly how exciting and adorable it was to see her hold onto things.
Laura was getting older and although she couldn’t move much, she was beginning to develop mentally. She would yell at the nurses when they turned off her bear hugger (this amazing contraption that they lie on and it blows warm air up and over their bodies) – but to be fair, I wouldn’t want it turned off either! One day she was so upset that the nurse kept trying to give her PRN’s (Pro re nada – latin for when necessary – refers to drugs) of her dilauded (similar to morphine but with a bit more kick) to calm her down. She thought with all that fussing she must be in pain, but the drugs didn’t help. You know what did help though? Turning up her bear hugger – Laura was what Paula (the doctor) liked to call “detail oriented” – her kind way of saying that Laura was high maintenance.
Laura also now had a favourite book! Green Eggs and Ham. Oh, how she loved that book – Dr Seuss really is a rhythmic master – she couldn’t get enough of it! She was tracking people and objects and loved to watch what was going on around her.
She must have been doing well because A.J felt comfortable enough to head home for a day to gather some winter clothing for us (when we arrived it was nice and toasty at the end of summer but winter was dawning).
While A.J was in Saskatoon, Laura was extubated! Now we were back to where we were a little over a month ago – hanging out, waiting for Laura’s lungs to get stronger while she was on CPAP. The greatest thing about CPAP though, is that unlike the ventilator, it was easy to move her! Bring on the cuddles 🙂
When A.J returned, he brought his mom with him. For the first time in Laura’s life, she was able to hold her! This was such a great day – can you imagine a grandmother having to wait two and a half months to hold her granddaughter?
Laura continued to do well but after a couple of days on cpap, Laura’s left lung collapsed again.
To make life a little easier, on Wednesday, November 2nd, 2016, Laura was taken down to radiology to have a PICC line put in her arm. This is great thing because it is more long term than her other central lines and it would be easier to manage her medications. Because her lung had collapsed and she was going down for another procedure, she was re-intubated. It’s funny how your perspective changes when you’ve been in the hospital for a long time – when they decided to intubate, we were in the waiting room because the unit was closed for a procedure on another child when oneof the residents came out and somberly told us that they would be intubating. I think she thought this would be tough news for us. I told her that we were fine with that as it would help her lung recruit and, confused, she walked away wondering why these parents weren’t even upset about their baby being put on a ventilator…
It’s funny but the second that breathing tube went back in Laura perked right up and was happy as a clam – I suppose she was happy letting a machine do all the hard work:)
Over the next week, Laura continued to improve. Her uncle came to visit and held her for the first time and we read lots of books and got lots of smiles! On the 7th, the day before my birthday, Laura was extubated again! This time, with two fully recruited lungs. I was able to spend my entire birthday holding Laura – what a great gift! Laura moved from bipap to CPAP and then to highflow! It had been such a long time since we had seen her beautiful face!! Unfortunately, the CPAP mask did beat her up a bit – but we didn’t mind.
These truly were great days – we held Laura all day, every day and it was the best! Finally, we were beginning to see an end to our journey and we began planning Christmas celebrations at home with our family!
It was hard to remember that Laura was still, technically, in heart failure. She had been started on a medication called captopril which would help to rebuild Laura’s damaged heart as well as keep her blood pressure under control. She was still on amiodarone but it had been moved to an oral version of the medication – much easier for us to administer at home (at home!). Her sedation meds had all been switched over to oral as well and other than the occasional bout of nasty withdrawal symptoms, she was doing well with the wean off of them. If you were on heavy drugs for months, you’d be addicted too:)
Laura was doing so well that it was determined that we would be moving out of the PCICU on Monday, November 14th, 2016. We were excited but sad – the nurses, respiratory therapists and doctors in the PCICU had become family to us. It was hard to imagine our lives outside of the unit.
Monday, November 14th, 2016 – the day had come to leave this wonderful place. We would have a transition meeting in the morning and then we’d be on our way. Who would have thought that this happy day would end so badly…