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Will completed his first week on Wednesday. For the first time, his parents saw him cry: a few tears came out of his eye and he was frowning. It was emotional. The nursing staff had seen him cry short spells before, which is fine. The doctors updated us on his treatment plan. The plan is to restart mechanical ventilation around the weekend. Blowing air into his lungs will show whether the air leak has healed itself. After that, he still needs to be able to absorb enough oxygen into his blood aided by mechanical ventilation, he needs to go off the heart-lung machine, he needs his operation to restore the diaphragm and then his lungs and lung blood vessels needs to grow to allow him to breathe by himself. A very, very long road ahead.
On Thursday Will was one week old. We are grateful for every day of it. His mum sang him happy birthday at his bedside. Will is being cared for by the nursing staff who have at least one member at his bedside 24/7 - never leaving the room. They had had to adjust Will's medication and blood product levels too drastically over the last 24 hours, so in the afternoon, he had to be plugged onto a new heart-lung machine. This is not uncommon after six days on one machine, but even for such a relatively routine operation a cardiac surgical team needs to be on standby at his bedside. So large are the risks Will is exposed to while he is on the heart-lung machine.
On his nineth day in life, Will received a tiny bit of air pressure into his lungs. Nothing much happened. Pressure is to be increased over the weekend. His brother and sister came over for a brief visit. A doctor tried unsuccesfully to insert a tube into a vein near his groin to replace the tube down his umbilical cord, which couldn't be used much longer and which might be getting infected. A surgeon made a second attempt - we had to sign a little consent form for that - and after an hour he called us that all had gone well. The nurses tried to work out why a tube into his wrist was bleeding slightly. With four patients in Will's room, the hospital felt crowded.
On his tenth day in life, Will got the tube removed from his belly button and the nurses managed to solve the bleeding issue on his wrist, which meant all attention could go to the mechanical ventilation and the air leak in his lung. The air pressure was increased and the lungs started to inflate and even absorb oxygen. No air came out of his chest through the drains that had been put in a long time ago and may no longer work. X-rays, however, could not fully confirm that there was no air leak, as some air was visible near the bottom of his lung. Air pressure was reduced and mechanical ventilation was switched to an oscillator and they keep taking x-rays to monitor the air near the bottom of his lung. The oxygen levels in the ventilator were turned down to reduce changes to the operation of the heart lung machine. All in all, the day was not the sigh of relief we had hoped for, but it did provide Will with his first breath in over a week.
On his eleventh day in life, x-rays were judged to confirm that no air was leaking out of his lungs, a big relief. This allows the staff to concentrate on getting more oxygen through his lungs. They put Will on nitric oxide to stimulate the blood vessels in his lungs. In the morning, Will had a 45 minute waking patch, in which
The oscilator is audible in the background. He has been more awake in recent days, despite being on morphine. Partly this is because he is an older baby now. Additionally, he hasn't received muscle relaxation drugs since he has been put on the heart lung machine. This allows his muscles to regain some strength. He will be put back onto muscle relaxants when the heart lung machine is switched off and the mechanical ventilation becomes the only means of getting his oxygen.
Day twelve brought a big change: Will was taken off the heart-lung machine. Now only the mechanical ventilation helps him to get sufficient oxygen. The operation for removing the tube to his artery near his heart took longer than expected as he was quite unstable. He now had to live on his own. We were at his bedside while the medical team did heart scans and tried everything to get his blood pressure up. Only after two hours and a cocktail of drugs did his body stabilize. Later than night he even opened his eyes, how beautiful to see him without the canula to his heart. We slept over in the hospital, to be close to him.
During the following night, the nursing staff weaned him off most of the drugs that he had received for his low blood pressure and they reduced the pressure and various other settings of the oscillator ventilator too. This meant Will started his thirteenth day in an relatively good condition. The medical staff became less negative about his prospects. In the morning, his siblings were brought in. To our surprise, Will was transferred to the neonatal intensive care unit (NICU) one floor higher during the afternoon, where he had started his stay at the Royal Children's Hospital. This is the ward specialized in CDH babies. This ward feels completely different, much quieter. The peadiatric intensive care unit (PICU) where Will stayed for ten days, specializes in the heart-lung machine and only receives CDH babies for whom all mechanical ventilation options have been exhausted. These are infrequent and very severe cases and explains why staff were so cautious about Will's prospects in this ward, which is understandable.
On his fourteenth day, Will was "stable, but critical", as the NICU staff puts it. They do things slightly differently that at PICU and prefer to give no base load of muscle relaxants. This means that when Will wakes, he often becomes too active or stressed and the nursing staff gives him a one-off dose. We feel more reluctant to touch him. To prevent him from waking, the staff put felt sunglasses on him. Presently, one of Will's main problems is his pulmonary hypertension. His left lung is virtually non-existant and the blood vessels in his right lung are still too narrow, which means that the right side of his heart, which pumps blood through the lungs, meets too much resistance. This can, among others, cause heart issues. It is addressed with a range of drugs, including one that keeps a valve between the left and right side of his heart open.
On Thursday, Will was two weeks old. What a lot has happened in his life. He got more muscle relaxants in anticipation of his operation to restore the diaphragm. This involves moving his bowels from his chest cavity down and stitching back the diaphragm. We sang him happy birthday (in Dutch) before walking out for the operation, which happened in the intensive care unit. It took just over two hours and all went well. To our surprise, Will had been really stable during the operation and he seemed to benefit immediately. He had a rather large hole in his diaphragm ("How large?", Piet asked, when we told him this story), so the surgeons had to use a gore-tex patch, which will stay in his body. He has a large scar under the left side of his chest (under white tape on the picture), which he may be able to pass off as a shark bite at school. About an hour after we came back in, his heart rate went up to 250 beats per minute. He had done this a number of times before at the other intensive care, but not during the last few days. A dozen staff were called in, who applied ice to his head, quick acting drugs and later slow acting drugs. In the end, they got a defibrillator from the other intensive care unit - at NICU they need one only once a year - and his heart rate was restored to his normal 180 beats per minute. They took him off some medicines that may have contributed to this episode and put him on others to prevent it reoccuring. It is not directly related to CDH and might be genetic. The cardiac team will follow up with more investigations. His parents stayed at the hospital that night.
On Friday morning, his sixteenth day, we were relieved to hear from the night shift that Will had not gone into rapid heart rhythm again. Nothing much happened the rest of the day apart from a heart scan, an x-ray and some minor adjustments to ventilation and medication. Will was on muscle relaxants, so we had little interaction. The nurse gave him his rabbit.