Adam's Heart - Part 8

Thanks so much for reading our blog! It’s rewarding for us to share all these details with our friends and family, it helps us remember the details enough to write them down, and hopefully Adam will appreciate knowing his story someday.  

The day after surgery was the start of Adam’s journey, God willing, toward being a normal baby. While that first day seemed long and without progress, it really was an amazingly brief journey considering the complexity and significance of his surgery. The doctors and nurses were well versed in how this process goes, and we were continually encouraged by their calm nature and lack of worry. The first day, they just wanted Adam to rest, keep his pain under control, and maintain stability with his vitals, especially blood pressure. He was getting hefty doses of Fentanyl, a strong pain killer, that pretty much kept him asleep. He opened his eyes a few times that first day, but that was it. We weren’t able to hold him anymore. There was so much he was connected to, and some of it was delicate – namely the arterial and aortic lines. We tried to spend time next to him, chatting with each other or the nurses, hoping maybe he could hear our voices and find them comforting.  

Now that we’re up during the night feeding Adam or walking laps around the house to get him to sleep, we look back fondly on those nights In the Ronald McDonald House. It was really kind of nice to have nurses looking after him so we could get a full night’s sleep. Mostly full night sleep – Katherine was still getting up every three hours to pump breast milk. I was getting up early to be back with him in time for the 6:30am rounds of the surgery team. The surgeons are the “big dogs” in the CVICU, and we really wanted to hear what they had to say about how he was doing. Over the first five days or so, he was generally doing well, but his blood pressure was often a concern. They tried several different medications, and each of them responded for a time, but then something different would be required, presumably because his condition was changing rapidly. At one point, I found it humorous that he responded real well to Inderal, the drug used by many performers, including lots of orchestra musicians, for stage anxiety.  

Day two was exciting because he started getting disconnected from a little more equipment. First were the chest tubes which drained fluid from his chest cavity. We had one night nurse in particular, for three nights in a row, who was very proactive about removing the equipment. There was a different dynamic at night – the daytime staff was  more cautious, always checking with layers of superiors before wanting to do anything. At night, the nurse would feel it was safe to remove tube such-and-such or step down the ventilator, would check with the attending cardiologist, and then just do it. It was fun to come in the mornings and see what progress had been made. Slowly, it all came off, and the pain medicines were reduced.

 

We had been warned that the recovery from surgery didn’t often go completely smoothly. Most babies have some hiccups along the way. Adam’s came on the second night after his surgery. When I came for the morning rounds early on Wednesday morning, the nurse told me he had had some “seizure activity” during the night – a rhythmic firing of his leg muscles that was definitely not normal baby twitching. It was concerning because it looked like seizures. But it didn’t have some of the hallmarks of typical seizures – a spike in heart rate and blood pressure. He had seemed otherwise calm through these two or three episodes lasting several seconds each. The doctor ordered an EEG – a procedure where they place electrodes all over the head and measure electrical activity in the brain. The procedure took place later that day. That afternoon, I went home to spend some time with Katie and Ben, then stopped at the grocery store to get some fruit and snacks for us at the hospital. While I was there, I got a text message from Katherine saying to please come back immediately – the neurology doctors wanted to consult with us about Adam possibly having epilepsy! Wow, that made for a very fast, stressful drive back to the med center. Neither Katherine or I knew much about epilepsy, including that it has a spectrum of severity. We imagined a child prone to grand mal seizures. Would he be able to drive? Play sports? This was the first time since getting his original diagnosis that there was a real fear of Adam having a long term, life-altering limitation, and it was very scary.  I got there quickly, but it turned out the neuroligists were not in a hurry to meet with us, and things were probably not as dire as we had imagined. The cardiology docs told us they had found “an area of focus.” It could be something, it could be nothing, but it was not uncommon. We met with neurology the next day, and they reiterated the information the cardiologists had told us. An area of focus is a spot of unorganized electrical activity in the brain. It can be a seizure, but it can also just be random. They said if they were to give everyone in the room an EEG, probably many of them would have these areas of focus. They weren’t overly concerned, but they did want to do a brain MRI. In the week that followed, there would be some hospital drama surrounding this MRI. The neurologists wanted to have it done, and the cardiologists did not. Initially, we were told that Adam’s surgeon, Dr, Fraser, was strongly opposed to it. Adam’s blood pressure was still high, and he was still in a pretty fragile post-operative state. Regardless of what the MRI told them, no immediate action would be taken anyway. As Dr. Fraser is one of the bigwigs at the hospital, his opinion prevailed. And as the days progressed without any other neurological concerns, the neurology folks acquiesced, and we were told to schedule a consultation two to three months after we were discharged. Whew. 

From there, the pace of recovery really picked up. On day three, the dialysis tube came out. Day four, the brain oxygen patch, urine catheter, and aortic line.  I think day four also saw the removal of the ventilator. This was significant in that if there was a problem and he had to be reintubated, that would be a quick and unpleasant procedure. The nurses (especially at night), had been proactive in stepping down the frequency and pressure of the ventilator. The idea is that by the time it gets shut off, the patient is doing almost all the breathing on their own. Adam’s breathing tube was removed uneventfully. He was given a nasal cannula for some extra oxygen, but that was removed a day later. 

Day five was awesome, as this was the day the arterial line was removed and we were able to hold Adam again. As I look back through the pictures we took, the one below is my favorite – Katherine holding him for the first time since his surgery. He got a lot of cuddling time that day. Day six saw plans to remove his feeding tube. Like the ventilator, there were some steps along the way. First, they delivered  a small amount of breast milk into his belly via the feeding tube. The next feeding, a little more was added, and this continued throughout the morning. He responded well, and that afternoon he got his first bottle of breast milk. Amazingly, we never had to give him any formula through his entire hospital stay! Just breast milk and IV nutrition. That night, the cardiologist gave the okay to try some breastfeeding. Katherine was extremely excited, and extremely anxious. We are big believers in the importance of breast milk for a growing baby, and that bond between mother and baby is a BIG deal. He did have six days of breastfeeding experience, and had developed good skills before he was admitted to the hospital. But would he remember how? All the medical staff was real confident but Katherine was nervous. 

 

 

 

The staff insisted that all these curtains and barriers be set up around this “scene.” Apparently it’s a privacy law or something. We didn’t really understand – you’re allowed to breastfeed anywhere in public, but apparently not in a hospital. Regardless, we were excited to give it a shot. I helped get Adam and his remaining tubes in place, and sure enough, he latched right on. Katherine was tremendously excited and relieved. From that point, Katherine would head up to the CVICU during the night rather than the hospital’s milk bank where she had been pumping. The nurse would just call our Ronald McDonald room when he started to get fussy from hunger, and she’d head up. The next day, the feeding tube was removed, and all that was left was some standard monitoring equipment (blood pressure, pulse oxymeter, etc) and his PICC line. 

 

Over the weekend, the doctors told us they were expecting to send Adam down to the cardiac floor of the hospital on Monday. The weekend went by slowly, but eventually Monday came and we took the next big step toward having a “normal” baby – out of the CVICU.