Well B is back to his charming self! Any time I call into his nurses for an update I generally get a version of, "Oh my goodness, he is just SO lovely!". It is great being back on Unit 2 (I'm sure I've mentioned that) and it is nice to be back amongst friends. The good news is that Mr.SUPER B is now only on a 1/2 litre of oxygen and has been moved out of the Respiratory wing into Green wing. Now, I'm not a huge fan of the green wing being as it is kinda off on it's own BUT it is for the 'healthiest' kiddos AND is the hallway ALL the Nurses go down to get to their break room so he gets lots and lots of loving.
I'm of course back at the crushing guilt stage of not being there with him 24/7 but that is just part of hospital living. After spending a min of 12 hrs a day in ICU with him I need to do things like, I don't know, buy groceries and such (not to mention the other boys need me a few hours a day, can you believe it? :). It's been fantastic timing on B's behalf to plan this little trip while my Mom is here but also painful that I cannot get all the house cleaning/sorting and such that I had planned while she is here. Frustrating but life as I know it.
Cardiology has been in to see him and has studied his EKG strips and they are comfortable with the arrhythmia as it is right now, not a major electrical interruption. The great news is that it is seemingly getting better as he is getting stronger. The funny (not at all really) thing? His big brother Rylan is now going into Cardiology for a consult in March (before anyone panics, he's fine). Ry called me into the bathroom last week to tell me he had a pain and couldn't get up. I asked if he just ate too much and when he straightened a bit he told me and pointed to his chest and said it felt like 'lightening' in his chest. Got him up, got him onto his bed and got out the stethoscope...sure enough his heart rate was a bit irregular...time to panic. Called Mike to make sure I wasn't overreacting (as he is my logical one) and he said to take him in. Of course this was right before bedtime...So off to Emerge (B was still in ICU at this point) with Rylan with Torin getting instructions that he could stay up till 9pm (which placated him nicely). I got to ER and the Nurses asked just how I figured out his heart rate was irregular to which my response was, "I have a son a history of SVT, with a Coarctaion and a resulting PDA"...enough said! They did an EKG, to which it was all normal (the pain had long since stopped at home) and the ER Doc came in to talk to us and did a double take as she was the Dr that admitted B the week before. I explained that yes, it was me with one of my OTHER children (lucky me) and she enquired to how B was and I explained he was on a vent in the ICU and she was so shocked. I explained just how fast and how sick he got and she was SO relieved that she hadn't sent him home (not that she would have). She explained (and I already knew) that there was only less than 1% chance that something really is wrong with Ry's heart but that she would put a requisition through for Cardio based on the fact that he's B's brother. I requested the AMAZING Dr.Fruitman and on the top of the requisition the ER Dr wrote "Braeden Lousier-Hicks' Sibling!". Just when you think life is exciting enough!!
Back to B,
Nephrology is happy to wait for now before continuing testing, why they are bothering to wait for possibly the NEXT UTI is beyond me. And not to worry, when I see one of them I will most certainly ASK that question.
The biggest issue now (and ongoing since July) is Mr.B's intolerance of feed. He has been just fine on the NJ feeding going straight into his intestine, no retching or bile back-up. Once they introduced feed back into his G-Tube he was ok with the very small amounts (running less into the NJ while uping the amount running into the G) but once they got past where more was going into the G than the NJ he started backing up bile again into his G-Tube (meaning that damn pylorus, valve at the bottom of the stomach is open again). They backed off a bit and are leaving him at the status quo for the weekend and will attempt furthering it on Monday after GI weighs in with their opinion. I also found he was 'gassier' again and needed a vent yesterday. It is all SO frustrating as there is NO physical explanation for it. The intestinal tracing test they do with contrast through the stomach tube and then xray it while it follows the intestine down is all showing good timing so there is really no physical evidence/appearance to why it is happening. Good thing it isn't up to me to figure out!! I'm also SO thankful that Dr.V is willing to keep him in until it is sorted out and that Dr.McNeil is on rotation for the next two weeks for Purple Team (long term chronic care that B is a part of) as she knows B very well as she was his first Purple Dr. when he came up initially from the PICU.
Onwards we go, my mother is actually out planting tulip bulbs in my planter boxes as I watch the snow fall outside! Winter is arriving whether we are ready for it or not as is Christmas (yes I said it) and of course only a few short weeks till B's FIRST BIRTHDAY! A day we didn't think we would see on more than one occasion in the past year. Hard to even process that I was hugely pregnant with our sweet B a year ago! Not too surprising I guess that I've been dreaming of babies lately! (I should follow that with LITERALLY been dreaming of babies, not "ooooh, I want another baby"...NOT now and NOT ever!! Just sayin!!) ;)
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