Going with the flow

So this time last week, high flow had been written into the plan but had not started.... now it's in full swing. Monday morning was to be Nico's first attempt at this and I arrived at the hospital on the biggest high. Brimming over with excitement, I burst into the bay and told the nurse Me"Hooray, high flow today for 2 hours!!". Nurse "Um, no. It says you can when feeding if needed" Me "Yesterday at the round the doctors were talking about it and said 2 hours a day" Nurse "No, it has high flow for feeding if needed, it has said that for days" Me "I know that, but we haven't been doing it because it wasn't needed, he can feed on CPAP but the doctors want him on 2 hours a day now if tolerating" Nurse "No, that's not what is written here" I was nearly going to grab a pen and write it on the damn plan myself, I was furious. Thankfully the rounds entered Nico's bay just as we were about to feed and I knew they would back me up. It was not Nico's assigned doctor but I like him and he does know Nico from a while back. My heart sank a wee bit when he said "I don't see the need to change anything on a public holiday" (ummm holiday? This is medicine not a corporate office... there is no holiday!!) but thankfully he continued with "But i strongly recommend trying him on high flow while you feed and hold him today so we can see how he goes" Hurrah! So out comes the high flow machine, off come the giant CPAP prongs and hat/ headband and on goes the tiny (in comparison) cannula of high flow. He looked so good!! Even though he still had all the velcro tape on his cheeks to keep it all in place, you could see so much more of him. He had a good feed and a nice long cuddle and did so well.. I was overjoyed. It was another sign that he really would come home. The next day they increased his high flow time to 2 hours twice a day and upped him to 2-4 suck feeds . He has his feeds 3 hourly so that means up to half of his feeds don't need to be tubed now!. It seemed to make feeding so much easier, but maybe he was just getting the hang of it. I was a little concerned about the bottle feeding, as I think I mentioned in previous blogs, but I had to be pragmatic and there was no way I could be there for 4 feeds a day and I did not want to hinder his progress by limiting to 1 or 2 per day. We had established feeding pretty well so he would be getting 1 or 2 bottles a day. The day after his first bottle, he all but refused to feed. I was a bit anxious that he had already goten his preference to the bottle but this was quickly appeased the next day when we had a 45 minute text book feed I actually became really happy with this development when I got to watch Geoff give him a bottle. I felt like they don't really get much 'special' time together. I know every moment is special but I mean Geoff doing something with Nico other than nappy changes and baths. This was just for them together. I have my feeding, he has his bottles. Perfect. Another day or two went by and again they increased his high flow to 2 x 4 hours and the next day: 2 x 6 hours a day!!! Half his day! He has had a few of his little episodes but nothing too major. The worst being this morning and I had a little panic at hearing his oxygen requirement went from 26-28% up to 40% but when I go there an hour later, it was back down to 28%. I have a feeling that it was due to having a nurse who didn't know him and she just increased it every time he had a little desaturation. My time management skills are being tested (and failing) but we are managing... it really is geting harder and harder to leave though. He is just so alert when he's awake And yesterday... maybe, just maybe... he smiled.