Laura’s recovery had gone very smoothly over the first 24 hours. So well, in fact, that a few doctors let slip that we may be able to get out of the hospital within the month! This was hard to believe after preparing ourselves for the possibility of being here for another year.
Over the next few days, Laura continued to recover. She would wake up, smile and be ready for stories as always. We didn’t wait too long before resuming her physio and she was happy to be able to sit on the bed like a normal baby.
Recovery was not without it’s snags, though. we were often reminded of the ICU recovery rule:
1 step forward, 2 steps back.
This was the way recovery had always gone for Laura – but by this point, we were used to it. There were few things that really got to us anymore because we knew that Laura could just as easily have not been here at all.
One step forward
Laura was able to tolerate her bipap being weaned and was able to go to a nasal mask! Over the course of the next few days, she was tolerating cpap at high pressures and we had begun the plan to wean the cpap and get her onto high-flow.
Two (and a half) steps back
Laura’s ECG was not quite right. The day after transplant the nurse noticed a few more pvc’s (premature ventricular contractions – essentially, an extra beat) than she’d have liked to see. By the next day, there were runs of them and later that afternoon Laura was in full-blown v-tach. She was still hooked up to pacing wires so her pacemaker was turned on slightly above her native heart rate and the arrhythmia was able to be controlled. The ecg team was called in to have a more in depth look at this arrhythmia because it appeared to be v-tach but her heart rate was only 120bpm. After some searching, they decided she was having transient slow ventricular tachycardia. Basically, one part of her heart going into v-tach and the other was remaining in sinus rhythm – hence the bizarre looking ecg.
A mini set-back. Laura had developed a new allergy! She was now getting hives from the hospital linens. This meant that we would need to bring a ton of blankets and cloths for Laura’s care because any time she would touch the hospital linens, she would break out. This meant excessive amounts of laundry and learning how to get meds, blood and chlorhexadine out of linens!
Diurese. This is what Laura was expected to do post surgery. It means she has to pee. She had just undergone major surgery (again) and we had to be sure her kidney function was still good. Day 1 – no pee. Day 2 – No pee – started on Lasix, and then increased lasix and started on spironilactone – still nothing. We were lucky to see a drop or two of urine coming out of her catheter. This was very concerning – she should definitely have been peeing by that point- she’d always had very strong kidneys even with what she’d gone through. The docs were concerned, the nurses were concerned – what if Laura required dialysis? We reduced all of her fluid input as much as possible – no feeds, less diluted meds, whatever we could find to cut back on what was entering her body because she was not getting rid of any of it. Dr Simon, however, assured everyone that this was normal post-transplant and he predicted that on Day 4, she would begin peeing.
One step forward.
Day 4 post-op. Laura started peeing! Dr Simon was exactly on point and Laura’s kidney function numbers (her creatinine and urea) had finally begun coming down to a normal range.
Two steps back.
Once Laura began peeing again, we were able to give her a little bit of breast milk to fill her tummy a bit. Almost as soon as feeds were started we saw a familiar sight in her JP bulb (chest tube – collection) – it was cloudy. We had seen this before – as soon as I saw it I told the nurse that Laura, once again, had chylothorax. The nurse took a sample and sent it off to the lab to confirm. There are other reasons for cloudiness in the pleural fluid but I knew that she had developed another tear that was leading to chyle flowing into her pleural cavity. I explained a little bit about chylothorax in Laura’s story – Part 8 – one step back. Essentially, lymphatic fluid leaks through a small tear near the pleural cavity and spills chyle into the lungs. If not found quickly, it can cause the lung to collapse and can cause severe respiratory distress. The treatment is, first, to insert a chest tube – this was already done. The next step is to stop all fatty food (like breast milk) and begin a formula low in triglycerides. This way, the chyle would not accumulate as quickly and the tear would get a chance to heal. We knew that this meant we were in for a 3-6 week wait with a chest tube and this special formula – so much for taking off within the month. The funny thing is that the first time I found out that Laura had chylothorax I was devastated, but this time I was barely bothered at all. So long as Laura wasn’t in immediate danger of death – we could handle pretty well anything that was thrown at us.
Laura’s breathing became more laboured and we couldn’t figure out why. One possibility was that Laura’s stomach was pushing up against her lungs. This wouldn’t be a crazy thought – her stomach was still quite distended from surgery and she seemed to have accumulated a lot of air in her intestines again as she had in the past when she had an illeus.
An emergency x-ray was ordered and it showed full collapse of the left lung and partial collapse of the right. We raised the settings on her cpap and over the course of the day she ended up back on full bipap support. She seemed uncomfortable and tired and needed break. She rested for the next couple of days while we also started some antibiotics just to be sure. Post-transplant, infection is a major concern as Laura had a very reduced immune system. Thankfully, she had not required induction (this is where they basically kill the immune system completely) because her heart had been such a good match but she was still at a high risk of infection and illness.
It’s odd how things become normal. It seemed that every day Laura would have a tiny victory followed by major setbacks but still, we were able to focus on the victories. The setbacks became normal and expected so we were no longer devastated when we found yet another reason why Laura’s recovery wouldn’t be straight forward. Laura had never been normal so why would we expect her to start now? The most important thing was that Laura had made it to transplant, her heart looked great on ECHOs and she was coming home with us soon – whether that was a month or 5 it didn’t matter – we would be taking her home with us.