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On Will's twenty third day in life, doctors tried to clamp the drain from the left side of his chest, as this seemed to only drain yellow fluids and no air. Will's blood oxygen saturation levels (sats) deteriorated straightaway and this experiment was subsequently abandonned. The staff measures how much liquid he loses through this drain and will need to replace it via his intravenous lines. After this experiment, a doctor inserted a new intravenous line into his right heel (see picture below). Presumably they took another line out, but we forgot to note which one. Will's main achievement for the day was coming off muscle relaxants without a fall in sats. One can see him breathe; in his case it is mostly a muscle reflex, as he gets his air from the ventilator. We can feel him move his fingers. Will makes small movements with his eyes - without opening them. It makes sitting at his bedside a lot more rewarding.
At 9pm, doctors called Will's parents at home, as Will had needed a repositioning of his left air drain after pockets of air developed outside his left lung. As an emergency measure, some air was vented with needles into his chest. The rest of the night was spent on recovering from this setback.
By the time his father arrived on his twenty fourth day in life, Will had been weaned of some of the extra oxygen and higher ventilator pressures. He kept improving slowly and coped well with a clean and bed change. In the afternoon, a doctor removed a drain from his right chest, which had been clamped 24 hours earlier. One drain remains in both his left and right chest. The doctor also tried, unsuccesfully, to insert a long line into the inside of his upper leg near his knee. After that, Will was allowed to go off muscle relaxants again, his last shot was at 2pm.
... and he opened his eyes
On his twenty fifth day in life, as he was off muscle relaxants for a prolonged period, Will opened his eyes during the night shift. He did it again during his wash and bed change, this time observed from a distance by his father, then again twice in the afternoon. The second time lasted an hour and a half and was observed by his mother, who extended her hospital visit until he closed his eyes again. The last time we saw him open his eyes this wide was on his twelfth day in life. The nursing staff replaced the container for collecting the fluids from his chest drain with a bigger container from the other intensive care unit. The nurses wondered how they should hook it up. Otherwise, the medical team was quite happy to just keep him stable on this Sunday.
On his twenty sixth day in life, Will was stable again. This was the second day in a row and hopefully gives his body the rest it needs to start growing his lungs and overcome his pulmonary hypertension. The medical staff is not making any changes yet. Will had waking patches during the visits of his dad in the morning and his mum in the afternoon. He looks at us while we speak or sing to him. It is beautiful. Late in the evening, a doctor put a long intravenous line into his head, replacing a line into his foot.
On his twenty seventh day, it took Will a very long time to recover from the line change. This posed a problem later in the morning, when his parents saw his oxygen saturation levels drop (very briefly to 50%) and nurses had little room to give him a boost. A doctor finally turned up the pressure in the ventilator to sufficient levels. But further handling was minimized during the rest of the day. Some blood came up the new intravenous into his head, which was addressed with higher pressure on the medication going into the line. An x-ray in early evening showed accumulation of air on the right side of his chest and a doctor moved the air drain on that side to remove the air. In this respect, the day was similar to day 18, 19, 20, 22 and 23. The main difference was that 'feeding was started'. As his stomach and bowel had not digested anything yet during his life, he will be kept at a pace of 1 milliliter per 4 hours for the moment; this is the standard initial rate for CDH babies. Will got hist first milliliter of expressed breastmilk inserted into his stomach via a green tube through his nose (milk shows as yellow) at 1pm and another 1 mil dose at 5pm.