The change to HFO ventilation felt like a huge, horrible step backwards... a sign things were not going well. Then came the next hit, knocking our spirits for 6 - the heart duct had to be surgically closed. Our little man, not even a kilo in weight, was having an operation. This time I didn't need to be prompted to ask questions. I had a million of them. How often does this op get done? What are the risks and side effects? What will they do? Could it not work? What if they didn't do it?
The PDA ligation was one of the most common operations on prem babies and involved keyhole surgery to put a little clip on the duct. It was as risk free as any operation could be and had no side effects. If I had have gone with my heart, I would have been an emotional wreck, so I put on my pragmatist hat and sucked it in. I sent Geoff along on the morning of the operation to sign the consent forms. There was no way I could go in today, all I would have thought as I looked at his tiny face would have been "Is this the last time...?"
I pottered around home playing with Brooklyn (20 months) watching the clock, waiting for the phone to ring... it didn't ring til 3 or 4 in the afternoon. Success, he did well but I was advised - for my own sanity - to wait an hour or 2 for him to really settle and not need so much monitoring. I was also warned he had a 'drain' in his side as there was a leak in his lung which would close on its own but the leaking air had to be diverted for obvious reasons.
From weeks 4 to 7 things were fairly slow, his oxygen requirements were up and down and his saturations were swinging all over the place still. There was an attempt to change him to regular ventilation again but it failed. He had several infections and was on and off antibiotics so often I couldn not keep up.
The 'novelty' had worn off and I was ready to walk in there, pack him into a car seat and take him home, I was so over it. The frustration was driving me insane. I had really thought that in 7 weeks we would have seen some progress but apart from weight gain... nothing. We had a family meeting with the doctors and I expressed my concerns. They assured me it was common and it was not neccesarily a bad sign. We talked about steroids and they said once the antibiotics had finished, if were happy to start, they would commence. The aim was to get his lungs stong enough to extubate (take out tubes) and have him on CPAP which is a form of nasal ventilation.
Side swiped once again, we got a call at 7pm, just 5 hours after the meeting, saying Nico had been in 100% oxygen and still not coping for the last 2 hours. They were starting the steroids immediately as an emergency intervention. There went another night's sleep.
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