At about 10:30, we were able to see Laura being wheeled back from the OR into the PCICU. We were able to see that she had no Berlin Heart but when I glanced at her monitor I was also surprised by a heart rate in the high 180s and a blood pressure of about 160/90. In case you’re not well versed in blood pressures, a healthy adult’s blood pressure hovers around 120/80 and a healthy baby’s heart rate should be around 80/40.
Dominic said that they’d been struggling to get her heart rate and blood pressure in the normal range and that her lactate was still quite high. Lactate is a hormone that shows how much oxygen is entering the cells and tissues of the body. If the heart is not working properly, lactate can rise which signifies a lack of oxygen absorption in the body. A normal range for lactate is between 0.5 and 1.0, Laura’s was hovering around 8 which is very high – showing that her heart was struggling. It is normal for lactate to be high in ischemic events (heart attack, cardiac arrest) or congestive heart failure. It is not uncommon, though, to have a high lactate after an ischemic event such as an open heart surgery where bipass is needed for an extended amount of time. Not only was Laura on bipass, but for a moment in time, she was without a heart as her old heart came out and the new one was being prepared to go in.
About 45 minutes later we were able to go in to see Laura. They were still working at getting her lines organized, her bleeding controlled, and her medications leveled out but because we knew the nurse well, she was fine with us coming in a bit early.
When we entered the unit we saw a sight that had become very familiar:
Laura was lying on the bed, still paralyzed from the rocuronium used during surgery. She was pale and swollen, her eyes were open a tiny bit showing the creepy white part of her eyes (a side effect from sedation), she had numerous lines as well a a couple of chest tubes to drain the blood from her chest cavity. She had a cerebral monitor on her head to make sure that her brain was receiving enough oxygen, she was intubated and all around – she looked like the kid we had grown accustomed to seeing.
There were two big differences this time though : her berlin heart was gone and her chest was closed! This was the first time that her sternum had ever been closed after surgery – they had never felt confident enough in her heart function to close it before. This was an excellent sign. We noticed right away that her chest seemed a bit ‘puffed out’ from the larger heart – we could also see her sternum move as her new heart beat in her chest showing how snugly it fit in her chest wall.
Her heart rate and blood pressure were still very high but her lactate had come down to about 5 – still far too high but it was heading in the right direction. She was started on a high dose of nipride to bring her blood pressure down and they increased her sedation and pain medication in case it was a sign that she was in pain. She was back on all her normal post-op drugs plus some new ones. Her medication list and the roles of each medication is found at the bottom of the post:)
My parents showed up mid-afternoon and Laura began to improve slowly but steadily. Her lactate dropped to 3 and her heart rate had come down to about 150. Her blood pressure had also been controlled with the nipride and was sitting around 90/50 which was a vast improvement. Her cerebral monitor was reading quite low but it had been steady which is the most important thing – the oxygen saturations to her brain were unchanged. Throughout the day they began to rise and they normalized overnight.
In the late afternoon, Laura’s nurse had to excuse herself and hand over Laura’s case to someone else as she was not feeling well – she knew that being around these sick kids wouldn’t do anyone any good.
With Laura sedated, we decided to head home for a good night’s sleep and that evening – I got sick. It seemed that I had caught whatever had been going around the unit – a stomach bug – likeley gastroenteritis. The only benefit to gastro- it is only passed through fecal matter – usually from touch contact with doornobs in bathrooms, etc and I had been wearing gloves every time I touched Laura (we also washed our hands with soap and water and hand sanitizer approximately 7 thousand times every hour). I ended up having to stay home the next day to be sure not to get Laura sick and A.J and my parents went in to the hospital. Thankfully, I knew she would be sleeping most of the day and would hardly notice that I wasn’t there.
Laura was doing exceptionally well! They extubated her that day – just over 24 hours since her return from surgery. Even with a fully functioning heart, the decision was made to put her on bipap because we knew her well enough not to trust her too much. Her lactate was down below 1.0 and her heart rate and blood pressure had normalized.
It was time to begin weaning some of her inotropic medications and to come down a little on sedation and pain medications. She woke up enough to be extubated and, in just under 24 hours, Laura was awake, smiling and off of the ventilator – this surgery was definitely different than all of the rest. 
Laura’s post-transplant medications:
(these are my basic explanations … definitely not textbook answers)
Epinepherine : inotrope – to help the strength of the heart’s ‘squeeze’, Norepinepherine: inotrope – helps to regulate the pressures in the heart as it squeezes, Nipride: antihypertensive – A very strong blood pressure medication – brings down the blood pressure instantly, Milrinone: inotrope – helps the heart relax fully in between beats, Hydromorphone (dilauded): opioid – pain medication – approximately 10x stronger than morphine and works slightly differently, Midazolam: sedative – helps the patient feel comfortable and ‘zen’ – it also helps to remove memory of the event, Clonodine: antihypertensive/withdrawal relief – helps keep the symptoms of withdrawal at bay and also lowers blood pressure, Ativan : sedative – related to midazolam – it is the oral medication for weaning midazolam to prevent withdrawal, Pantoprozol (pantoloc): Acid Reflux – used to settle the stomach – helpful for when the patient is receiving so many meds, Methadone: opioid – used to treat severe withdrawal, Solu-medrol: steroid – the iv version of prednisone – used to suppress the immune response to the new organ, Tacrolimus: Anti-rejection/immuno-suppresant – used to suppress the immune response to the foreign organ, Septra/Bactrim – antibiotic – used to prevent a type of pneumonia called Pneumocystis jiroveci pneumonia, Mycophenilate: anti-rejection/immuno-suppressant – used to prevent rejection and lower white cell counts, Nystatin: anti-fungal – used to prevent thrush in patients with lowered immune systems – taken while on steroids, Lasix: diuretic – used to help a patient with weakened kidneys to produce urine, Spironilactone: diuretic – used to help the patient pee – a potassium-sparing diuretic, magnesium: supplement – used to increase the magnesium levels to prevent arrythmias and to help with small muscle function.
Our Transplanted Life 