The grandiose news is that we made it upstairs to Unit 2 yesterday AND Mr.B is off his highflow oxygen and onto only 2litres of regular flow. He is getting stronger and coughing like mad trying to get all of the crud out of his lungs. The most wonderful news though is that he's started 'smooching', making a kissing smack with his lips. Oh my goodness did we laugh yesterday! One of his favourite Nurses, Breanna, was in visiting with him and was making kissing noises to him and he mimicked her. He's closed his mouth for me before but has never actually made the 'smooch' until now. I'm sure we were heard throughout the who unit! The news travels fast and he's had his usual number of visitors now with the expectation they were going to get the 'kisses' too. Laughter really is the best medicine!
Now that the lungs are healing we are looking at the rest of his little body and get it sorted out before coming home. I had a long talk with Dr.Vomiero about the 'plan' and her idea (which I am fully on board with) is to keep him in this time till everything is sorted. Nephrology wants a much closer look at the cysts in his kidneys, GI needs to get a plan in place for his intestinal upset and feeding, get him off the NJ tube and we need to work out if the g-tube is working efficiently or not. There is no point, in my mind, to let him home now when there are still so many issues/kinks to work out. In my mind I don't want to bring him home until he can have a full feed and be moved around without a major retching episode (if that is in fact possible). So sad with the idea he won't be home for a bit but happy that Dr.V and I am on the exact same page (she has been the Dr to treat him the most on Unit 2 and is really the one who understands just how 'quirky' he is).
The other thing to sort out is his heart. He is still having an arrhythmia when he falls into sleep and his heart rate is now falling into the mid 60's when he is sleeping (it used to be 105 was low for him). We tried to get an EKG on him today but unless he's asleep there isn't much to see. The plan is to catch him right before sleep tonight and get the leads on to get a reading for when he is in fact asleep. I told Dr.Vomiero about my cardiac concerns right away when we came upstairs and she didn't brush it off like they had in the PICU (which I knew she wouldn't) AND she consulted Cardiology immediately...what a concept! Thank you Dr.V! I am certainly happy to be back 'home' on Unit 2! Cardiology has lowered his heart med (for SVT control) and it could be just as simple as he's outgrown his SVT's and therefore doesn't need it...or not, being Braeden.
Of course my biggest goal now is to fatten up my little bug as he is looking so little to me again and when I snuggled him today (finally a real snuggle after getting off the vent and the awkward holds that go with that), he was just so small on my chest. Does whipped cream count as thickened food that he's been cleared for tastes?
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