Since Massimo went in on Thursday in the early morning he has been given CPAP. CPAP stands for Continuous Positive Air Pressure which means that the machine blows air constantly into his lungs, keeping them ever so slightly open. As the hardest part of the breath is the initial opening of the lungs, with CPAP this is much easier. The machine can also detect when he breathes and can push additional air into his lungs with every breath. This is called ASB. Both the CPAP and the ASB can be set at certain pressures (in cms of water). The pressure of the CPAP is know as the PEEP (Positive End Expiratory Pressure). When Massimo first went in on Thursday he was on a peep of 10 and on ASB. On Friday the ASB was turned down, then off, on Saturday the peep was down to 8, on Saturday the peep came down to 6. On Monday morning the peep came down to 4 and he was taken off the CPAP for a trial with just oxygen.
Throughout this time he was still looking as though he was working hard. He was still sleeping a lot as though exhausted from the effort of breathing. He was not the happy and smiley little boy we all know. When I went in on the Monday morning he was really struggling on the oxygen and they put him back onto the CPAP and put his peep back to 6. A few hours later he seemed to turn a corner. He was happy and smiley, his breathing seemed to be quite good. Both Justin and I managed to have some lovely cuddles and a bit of a play with him. It was lovely.
Then, yesterday morning we were back to the sleeping – he slept the whole time I was there, he was barely aware of my presence. His breathing started to look not so good and the ASB was turned on again, and then turned up to 7. This seems to have improved his breathing but today he is restless and unhappy and the nurse has given him some sedation to help him through.
When he first went in there were signs of a viral infection. This has now gone. No teeth have come through although he has had a very red and sore bottom which is often seen with teething. Metanium has helped bring the redness down. He did have a temperature when he first went it, but that went away. Now he spiked a temperature again yesterday.
Of course, we mustn’t forget that Massimo had another dose of chemotherapy on Monday and that certainly can’t be helping his general well-being. It looks as though the wee man will be spending his birthday in PICU. Assuming they aren’t busy there we are planning to take over one of the isolation rooms so that Max can still be on CPAP, but then we can all be in there with him and not disturb the other patients. Granny is baking a cake and we will have a little tea party. If any of you would like to join us, you would be most welcome.