I got off the computer last night and phoned into check on Mr. B before bed and in true Braeden fashion he was having a bit of a night. They had put Braeden down to four litres of oxygen yesterday (down from five) for the first time in weeks. We were excited to see how it was going to shape up...well he was having issues breathing last night when I called. They gave him some Ventolin and put him back up to the five litres. They also put him on isolation as he was running a fever as well...it wasn't a good sleep night for either of us last night! When I called this morning first thing he was doing alright and had had a decent night without any SVT's so that was good. I got to spend the day with him today (thanks to my super kind friend Rachel for taking Rylan again today) and he slept the entire day away. He was somewhat awake this morning when I got there for his EKG and to get put on the heart halter but then crashed. He awoke long enough to get a bum change, and I didn't even get a chance to interact with him before he'd crashed again. Definitely not his normal. He was also having issues with d-sating randomly today as well (when his oxygen drops for no reason and the monitor goes off) and his heart rate was dropping with his oxygen. The 'fast' panel has come back clear for things like RSV and such but we are waiting till tomorrow for the full panel work-up to see if something (bug) is lurking.
Mike and I went up together tonight (thanks Kelsey for babysitting) and when we got there, there was a party in his room (which is never good btw). The Paediatrician, his nurse, a second nurse and RT were all standing around him and the Ped announced how happy she was that we were there several times. The poor nurse (who'd never had him before) was unable to settle him for over four hours and was getting really concerned. Mike and I walked in and said hi to him and he was happy and kicking his feet! Little Turkey! The Ped isn't sure if it is a bug or maybe just B. Sometimes the nurses say his lungs sound 'tight' but with chronic lung disease it can sound different and can be mistaken as 'tight'. Anyhow we are going to have him more closely watched over night and they will do a chest xray in the morning if things are still off. The Ped is wondering if maybe there is a bit of a collapse on the left side, which wouldn't be the first time for that either.
Mike was commenting tonight how Braeden doesn't ever really look at him and I concurred that it is the same with me. He certainly knows who we are, he just only stares when a pretty girl comes to hold him! Well! As if he didn't just show off tonight to his Dad. He and Mike had a wonderful 'play' and smile-fest while I held him! I had tears streaming down my face from laughter and just the joy of seeing them both so enamoured with each other. Poor B got so over stimulated though that he had a bit of a spaz out because he didn't know what to do with all the extra stimulation he'd accumulated! Watching the smiles on both of their faces was certainly my 'joy' moment of the day.
We did have an interesting chat with the Ped Dr though, it would seem that when they were doing the xray for B's NJ tube (feeding) placement that his bowels seem a bit 'off'. The radiologist thinks that B could have an issue with the small intestine not being attached to the abdominal wall properly in the right places. It would certainly be easier to just draw you the diagram that the Dr drew for us. SO, here we are, yet another thing! This poor kid, I don't know what was going on when he was in utero! The Ped Dr is curious that when he was diagnosed with possible necrosis (in the intestines back when he was only two weeks old) that maybe it was a twist, not nec. Who knows. They are going to put dye down in through his stomach and do a series of scans to trace his intestines but they can't do it right now with the NJ tube as it goes into his intestine, not stomach. The plan is the next time Mr.B pulls out his NJ tube (which he will inevitably do), they will do the scan then since they've got the tube out and have to replace it anyhow. Of course if something comes up in the meantime to lean more towards a possible twist or such they will do it sooner rather than wait. Maybe I took too many prenatals, maybe not enough??? All I know is that I'm out of fingers and toes to count this kid's issues.
Let's hope for a clear panel tomorrow so we can lift the isolation and that maybe he was just having an 'off' couple of days. This Momma has certainly had her fair share of drama and we are only on Wednesday!