With Laura’s lungs failing to be able to function on their own without the help of the ventilator, it was time to figure out what the problem was. X-rays can only show so much so an ultrasound of her diaphragm was ordered. The results showed what we had all been guessing – the sutures from her diaphragm plication surgery had released and her diaphragm was, once again, obstructing her left lung.
This isn’t a surgical error, the plication sutures are only meant to hold for about 2 months. The purpose of the surgery is to get the lung fully recruited and then the theory is that once it’s regained strength, it won’t matter if the diaphragm moves up again – the lung is strong enough to remain fully functional anyways. When the original surgery was performed, we assumed Laura would have been well on the road to recovery by 2 months out so it wasn’t an issue.
What this meant was that it was time to, once again, head into the OR for surgery. The surgery is relatively simple – they go in through her ribs (a thoracotomy), find the diaphragm, hold it down, and suture it in place. The plan this time around was to add considerably more sutures in case we were to remain in hospital for a while – this plication would last more than 2 months.
On December 1st, 2016, Laura headed back to the OR for surgery #7 – at least this one was not open-heart and bipass was not required. It’s silly to think that by this point we barely considered this a surgery – it really was small potatoes compared to what she had already endured. A VAD specialist would be going into the OR with her to be sure her Berlin Heart continued to do it’s job during the surgery so we felt comfortable saying our goodbyes and trusting her into the very capable hands of the young surgeon who had performed Laura’s 3rd open heart surgery (the impossible one if you remember).
Thoracotomies are great because it gives the surgeon access to the chest cavity without opening the sternum but it brings with it an immense amount of pain. To perform the surgery they have to open up the space between the ribs and once this is closed it leaves terrible bruising and pain with each breath. While on the ventilator, Laura was taking deep breaths which is even worse for the pain. After the last plication, Laura’s pain medication was nearly doubled and we had no idea what to expect after this one.
After her surgery, we went in to see how everything had gone – it all went smoothly but they ended up having to do a bit more than anticipated. Along with plicating her diaphragm, they had to do some pretty extensive decortication of her left lung – meaning they basically had to pry it off of the top of her chest cavity and move it back into place while also removing some fibrous tissue that is so thick it restricts lung movement – her diaphragm had been causing more damage than we had thought.
After surgery, as expected, Laura looked terrible. She was upset and didn’t feel like doing much of anything. We left her that evening without having done much in the way of playing but she did like hearing stories (and she was developing an impressive bed-side library).
December 2nd, 2016. A.J’s mom and sister were coming up for the weekend to see us and Laura – it would be the first time that his sister had seen her since she was born as she had been away for school. They should be arriving mid afternoon.
Shortly after his mom and sister arrived, Laura began worsening.
Her colour was off and she was struggling to breath.
Her stomach had swollen to about two times it’s normal size and you could see all of the vasculature under the surface. She had not had a bowel movement since surgery and she hadn’t been herself since then either.
Our nurse, C, who we had in the past did not like what she was seeing. This was not Laura’s normal behaviour and something was just not right. The nurse called over the resident who was on and the resident was not worried – her blood pressure was good and her ECG looked fine. Rotating residents – frustrating – by this point we knew that residents are simply baby doctors and we’d rather hear from a ‘real’ doctor -it’s not their fault – they’re just new to all of this. The nurse was not happy with this answer so she decided to take an abdomonal circumference so that we could keep an eye on her girth over the next 24 hours or so.
We had been so fortunate to have been blessed with very experienced and well trained nurses – this nurse was working on her transport and level 4 ICU care – the highest you can attain in this unit. She knew what was right and this was not right. It was not Laura.
Unfortunately, I did not feel comfortable leaving Laura’s side that whole evening so A.J’s mom and sister didn’t actually get to see much of Laura.
As the evening wore on Laura’s condition grew worse and worse. We asked to see the on-call pediatrician (he had been around pretty much every day for our entire stay) and he said that she looked okay, it was probably just gas in her tummy so he wasn’t overly concerned. Great. No one believes us except our nurse – she looks terrible and feels terrible. Her breathing had become very laboured which is insane given that she was fully ventilated – we even ended up having an RT increase her support because her breathing looked so bad. Her colour continued to get more and more dusky. My heart sank and my stomach felt like a bottomless pit.
This was the most nervous I had been in a long time – more nervous than when she was on ECMO.
Why was I more nervous? Because we knew the statistics – problems with the plumbing of the heart can be fixed but once infection strikes – it becomes a chasing game trying to keep ahead of the problems. Infection is the culprit that takes many cardiac kids – their weak bodies just can’t handle fighting even the smallest of battles after all they’ve endured. No one was listening and that was making things even worse. All I could think of was what the transplant team continuously told us – she may not make it to transplant.
Handover. This is when the intensivists switch over for the evening shift. That evening, John was on service – tall, greying and hilarious. This was one of the funniest men I have met and he was great at reading the room – his most common saying when we were holding Laura:
Ew, don’t touch that – it’s sick!
It sounds mean but trust me – it wasn’t. Laughter and joking is so refreshing and I promise, he wouldn’t have said this to a family that had been on the unit for a day or a week – we had been around the block a bit.
That evening once he was finished receiving handover from the day shift intensivist, we called him over to Laura’s bedside. We told him our concerns and he came over to do an assessment. As soon as he lifted the blanket off Laura he said (oh so eloquently) :
Oh yeah, she looks like shite!
Pardon the language but it isn’t mine – it was his. I am not a person that enjoys cuss words but this was the best thing I had heard all day – thank you! Finally someone that knows Laura well is looking at her and sees what we see. He continued on to say that he had never before seen her without a smile on her face so something had to be wrong. This might be normal for another baby but it was just not her.
He ordered an ultrasound and an x-ray of her abdomen as well as an emergency echo of her right ventricle – with her breathing looking how it did, he was concerned that her right ventricle might be failing. He also ordered a full set of cultures as this looked like it might be an infection of some kind. Finally – some action.
We went home that evening feeling on edge but knowing that we could call as often as we wanted and that they’d call with any problems.
Saturday, December 2nd, 2016. When we arrived at the hospital, we found that the unit was closed for a procedure. This weekend was the worst weekend we ever saw on the unit – 2 babies arrested, both were placed on ECMO, another (who had been a long-termer like Laura) began going downhill again, Laura was sick and looking awful. It seemed as if it was one thing after another going wrong. It was chaos. We knew someone was being put on ECMO, what we didn’t know was that one of the babies belonged to one of my good friends from the pumping room – this was the beginning of what would lead to the end for her daughter – I still think about her every day.
I called the nurse to see how the evening had gone. She told me that the abdominal x-ray showed lots of air in Laura’s intestines suggesting that she may have an ileus as a side effect from her surgery (lack of movement somewhere in the intestines that leads to a buildup and potential blockage of food material – can lead to an intestinal obstruction). Her breathing had worsened overnight and they had put her on as much ventilatory support as they could. And then I heard the words that we were dreading:
This is presenting an awful lot like sepsis.
Crap. This can not be happening – Laura’s failing heart was so far gone that it was poisoning her body. They had started her on 4 different antibiotics to fight off whatever was lurking in her body (Vancomycin, Pip tazo, Fluconozole, Meropenim) and gave her a glycerine suppository to try to get the plumbing working again. They called infectious disease for a consult to make sure that they were doing everything in their power to fight this thing head on. It was better to load Laura up with antibiotics that she didn’t need than to miss something and fall behind in her treatment.
When we arrived on the unit, John was there taking care of some of the kids (he remained on even though he was on for evenings this week), Lindsay was there taking care of some of the really sick ones and another intensivist, Ian was also on the unit as the primary intensivist for the day. You know it is insanity when there are three intensivists being run off their feet trying to get all of these sick kids under control.
By this point Laura’s stomach had ballooned out of control and had turned a bluish – grey from the strain put on her skin from all the stretching. Her colour was still terrible but her breathing looked much better! One of the RT’s that was on had the idea to switch up her ventilator settings and it seemed to do the trick. Finally, a flicker of hope in our weekend. With her breathing improving, I let A.J’s mom and sister visit a bit more – albeit most of the time it was A.J that left – I wanted to stay in case there were any changes.
I worried about Laura, I worried about my friend and her baby, and I worried in general about all the chaos surrounding us – this was such an odd normal. It had become our life to be surrounded by tragedy, suffering and hope. The best thing I could tell anyone was that this team could beat almost anything – they had saved my daughter more times than I could count and they knew what they were doing. I will always go out of my way to travel the 6 hours to Edmonton if any of my future kids or Laura ever require any kind of serious care – it’s worth it.
When the evening came, we were thrilled to have one of our absolute favourite nurses with us. Michelle had been with Laura during her first arrest and had administered her I.O (intraosseuous cannulation – an IV that is drilled directly into the bone when a vein cannot be found). She had been a part of the Salvation Army since she was a kid as well so we had an instant connection. Michelle had never been Laura’s bedside nurse before – she was almost exclusively on PICU transport so she was rarely a bedside nurse for anyone. Having her with Laura was such a sigh of relief for us – we knew Laura would be in good hands.
When we called later that night Laura had pooped! It is crazy to be that excited about poop…
The next day Laura returned to her normal self – it took a few days for the swelling to go down and her CRP and white blood cell count (infection and inflammation markers) took about a week to return to normal but it was nice to see Laura’s smiling face again – time to try to get back to our normal and head towards extubating!
Our Transplanted Life 