One week after Laura’s transplant my mom was throwing Laura her baby shower! 4 months late but better late than never right? Many people showed up for the shower and Laura and I were going to skype in to be a part of it. Technology is amazing – and frustrating. It was pretty well impossible to hear what was going on but at least I was able to see everyone!
I was excited for everyone to see how well Laura was doing only one week after surgery! But, of course, the shower was on that same day as her lung collapse. She looked awful – she was struggling to breath and her color was off. I showed her off for about 5 seconds and then didn’t want them to have to see her that way. It was still a nice way to spend a morning though.
Laura’s lung function continued to decline after that. We could not seem to get her off bipap support and there was still no good reason for it. Her lungs had re-recruited with the help of some more pressure but that still wasn’t enough – she was working too hard for each breath.
On January 15th, 2017 Laura was moved from her bed – Bed #1. This was the largest bed space on the unit and Laura had needed it for all her equipment over the past number of months (ECMO, Berlin Heart, centrimag, etc). There was another baby who had been placed on ECMO who needed the space so we moved to bed #4 – a bed with a view! We had never had a window before so that was pretty exciting. I would be lying if I said there wasn’t some emotional attachment to bed #1 though – we had been there since September 25th and we had a lot of great memories there.
Laura was looking much better all around – her colour was amazing and she was being weaned off her medications. She was no longer on any medications for her heart function and on ECHOs her heart looked amazing – we had never really heard that before! No more heart failure, no more regurging mitral valve, no more stenosis – this was a new heart and a new outlook!
Everything was going really smoothly – except for her lungs. Her breathing was laboured – she had to use every muscle in her abdomen just to take a breath and her nairs flared with each inhale. Her respiratory rate was through the roof – especially when she was excited or mad. She was taking upwards of 80 breaths per minute – just try that for a moment – it is not comfortable.
The team decided that she simply needed time.
It was ridiculous to expect her lung function to improve overnight after all she had been through. The transplant team expected miraculous things but the team in the PCICU knew Laura a little better than that – this was not a ‘regular’ transplant patient. Many children that require transplants have had no previous surgery and others have had only one or two. Many wait at home for their gift as they are well enough to do so. Their stories are heroic and amazing but they are different than Laura’s. She had so many surgeries and complications leading up to transplant that to have a difficult course post-transplant was to be expected.
After a few days of struggling, her nurse thought that she was desatting overnight and turned up her bipap rate (the breaths that it gives the child) again. This was a fair assumption – her sats were showing as being in the 60s on the monitor and she was beet red when she was angry- unfortunately, sat probes suck and if the child moves an inch or is cold it does not pick up. Laura had not had a single desat since transplant – the desat was not real. We knew that Laura would not turn red at all in a desat – she would go blue or purple and her skin would become very dusky – this was her norm even when she dipped into the low 80s.
In the morning, T (the awesome RT that was in charge of the cardio kids) came by and we explained the situation. She determined that we were making a mistake by increasing the rate on her bipap and that instead, we should take away her rate all together and increase her inspiratory pressure to create a larger gap between her insparatory and expiratory pressures (essentially, she should be having more air pushed into her lungs when she took a breath and the baseline pressure would be reduced – this way when she would breath it would be a bit more like when the patient is on negative pressure – breathing with no additional pressure – how you and I breath normally).
The team also made a few other changes. She looked like she was on the verge of being dehydrated – she was thin, concaved eyes and a sunken fontanelle – but still, they wanted to diurese her more. This was supported by her x-ray that morning which showed that a small pocket of fluid had collected around her left lung – it was not chyle because it was not coming out of her JP (remember – she still had a chest tube for the chylothorax). They were hoping that making her pee a bit more would get rid of the fluid – otherwise they’d have to insert a needle to remove it themselves.
The other change was that they decided to try her on milrinone again. We could not be 100% certain that a problem with her right ventricle wasn’t causing the breathing problems. After transplant she had some mild narrowing in her Pulmonary Arteries due to the scar tissue from previous surgeries so we would watch to see if the milrinone changed her respiratory status or not.
There was nothing that could have prepared us for the conversation that would be had with the respirology team later that week…
Our Transplanted Life 