Laura's Story\

Laura’s Story – Part 23 – Unexpected news

On January 24th, 2017, I called an emergency meeting with Lindsay (our primary intensivist). This was the first time I had ever asked her to come to our bedside when she wasn’t on service. Why? Because of a rather unexpected encounter we had earlier that morning…

Once she could be picked up, she never wanted to be put back down.

Laura’s respiratory status was still unchanged so when a doctor came by introducing herself as part of the respirology team, we were not surprised. She explained that she had been asked by the long-term-care team to come and do a home respirology consult for Laura. Again, no surprise there – we fully expected to be leaving the hospital on cpap either all day or just when she slept at night.

She asked a little about Laura’s history and what she’d undergone over the last 4.5 months. She was shocked that Laura had gone through so much in such a short amount of time. She asked about Laura’s bipap settings and when the last time we were able to wean was. We explained the situation and explained that Laura had just received a heart transplant 2 weeks earlier so we were not surprised at her slow progress. We talked about the possibility of Laura requiring CPAP support all day at home for a little while and the possibility of CPAP at night only. We talked about how her lungs must be very weak from being on a ventilator for so long.

All of this was normal conversation – we knew that Laura’s lungs were weak and that it would take some time for the muscle to build back up. Then came the shocker:

We need to consider that Laura may do better with a tracheotomy.

Excuse me? I quickly jumped into defense mode. Laura had major surgery 2 weeks ago – don’t you think this conversation is just a tad premature? She has always taken upwards of 3-4 weeks to get off CPAP/BiPap support and has done fine. Her breathing has improved over the past couple of days – especially since diuresing her more and changing her bipap settings.

I then may have proceeded to ask the doctor if she had actually read Laura’s chart before coming to talk to us. That was probably a rude question but you know what was worse – the answer. She hadn’t really gotten around to reading the chart but she felt a tracheotomy would be best. Excellent – it’s nice to have a professional opinion from a professional who is not even in the loop. I’m sure she is an excellent doctor – she was a very nice lady and we spoke for a while after that conversation about her grandkids and all sorts of things. It was not her as a person that I was upset with – it was her professional self that I was taking issue with.

Don’t get me wrong – a trach can be a life saver for those who need it – they don’t have to have a mask on their face and there is less chance of the mask coming loose and losing the pressure and oxygen that the patient so desperately needs. I’m not saying that I have anything against trachs… I just didn’t feel that another surgery with a large risk for infection made any sense for Laura at that time.

I called for Lindsay. I was angry. I’m sure my face was red and my pulse was racing – I couldn’t believe the conversation we had just had. I went to pump where my anger festered and grew as I sat alone thinking back on the day’s events.

Lindsay came to see us later that day and I explained the situation and the conversation that we had with this doctor. Lindsay was shocked to say the least. She agreed that Laura’s lungs weren’t cooperating how we would like but she ensured us that the thought of a tracheotomy had not even crossed her mind. She ensured us that

No one from the team had talked about a trach for Laura and they were not going to let that happen before they had exhausted all other options.

The great thing about living in a unit full of family is that they have your back. The respirology team was merely a consult – as long as Laura was on the unit – they were in charge of her care and could accept or dismiss any of the consults they received.

A little while later Lindsay came back saying that the doctor from respirology had also suggested that we wean her by doing cpap trials of 5 minutes. 5 minutes is insanity – right before Laura’s lung collapsed we were doing 2 hour trials. According to the plan laid out by the consult, it would take approximately seven hundred years to get her weaned off the support. Lindsay thought this was ludicrous and said she would discuss it with the team but that they were unlikely to follow that advice.

Fast forward to January 30th – what is that you see? High flow! IMG_6137.JPG

Over the course of the days that followed the consult from respirology, every single doctor from the unit came up to tell us how silly that consult was. I think that they moved so fast on her wean to cpap and then to high flow partially as an “I told you so” to the respirology team. The day after the suggestion to do 5 minute trials on cpap – Vijay decided to do two 1 hour trials on cpap. From there we went to 2 hour trials and within a couple of days Laura was done with bipap! Diuresing her and getting rid of that pocket of fluid made all the difference – she looked so much better and her respiratory rate was beginning to come down. She was still breathing quickly but as long as she looked good – we didn’t really care.

Finally, for the first time since transplant, we were able to begin to relax and enjoy Laura’s company. Time to get ready for our new normal with a ‘healthy’-ish baby.


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