"Do not go where the path may lead, go instead where there is no path and leave a trail."
...Ralph Waldo Emerson
Love that quote! I just saw it tonight and thought how well it fits one's life that has a complex-care kiddo! So much of what we do with Mr.B is forge new paths, there is no existing path to follow so we plod on and just make our own.
|Smack Daddy is a good game!|
I had a surprise visitor today in the form of a lovely Respirologist/Sleep Doctor. I was very happy to meet her and I think I actually scared her with how excited I was to meet her! When she introduced herself I exclaimed, "Oh, you're the one with all the answers!". I wasn't really serious, well kinda was. She was very nice and even sat on the floor with B and I in her nice pants and high heels (scored points). We discussed B a bit and his sleeping habits (or lack thereof). She'd like to see him back in the sleep clinic sooner rather than later with the hope that we can actually catch one of his night terrors on the EEG machine (brain waves). She said if we catch one then it can give her a better indication to where in the sleep cycle it is happening and then better narrow down treatment options. I'm all for that! Our last foray into the sleep clinic was horrendous but I'll go through an entire night of no real sleep (oh yah, I already do) if that means we get some ideas/answers. We'll also get an idea if B's sleep apnea has maybe worsened and is waking him as well.
|No need for O2 Momma, I'm a SuperStar remember?!|
She also gave me the results of his overnight oxsymmetry test (oxygen)...ready.....drumroll please!!!! WE ARE OFF OXYGEN EXCEPT FOR BACK-UP PURPOSES!!! Hurray, hurray, hurray, hurray!!! 19 mths later we can put B safely to bed with no nasal prongs (which he promptly pulls out). We'll still have oxygen in the home for the time being for back-up purposes (if he's working harder) but there is no set amount he needs each day. So very happy!! We'll do another overnight test in about a month to see how he's doing and if he is still maintaining it or not (kids can use up their 'stores' of O2 and start needing more assistance). A pretty huge success for us, especially since two weeks ago we had to up his O2! My SuperStar!
I got here earlier today (I talked myself into getting out of bed this morning with the promise of a nap...ha ha, tricked me). Mr.B was awake but in a much happier mood then the last two mornings when I wasn't here (big shock). One thing I did notice though was that he was very 'hoarse' with phlegm in his throat. Dr.Volmiero assured me that his lungs were sounding clear still even though he sounded so rough. I brought him out to play and he had a couple of good, big coughs and a heavy stream of clear mucous out the nose (you're welcome). I was so not happy with the realization that maybe he's caught a cold but after all that (clean up on aisle 3) he's been good. Go figure!
It was one of those days that I was really wishing I could wiggle my nose and transport myself. I spent the morning with B, got him settled in for a nap, ran home (or drove), picked up the big boys, took them to the soccer wind-up party, registered them for swimming lessons, took them home, scarfed down some lunch, fixed our Skype (which I'd been promising for days) and drove back here....yeah, no nap in sight.
|Erin and the Mister|
When I did come back this afternoon it was with a smile on my face since my friend Erin came in for a visit. I'd like to say she came to see me but we all know what the bigger draw is! Mr.B loved seeing her and she him (of course). Erin was a great back-up cuddler for me back when B was living here so it was nice for her to see him so active and full of energy.
|In need of a 'real' bath, this hospital bedhead is outta control!|
Mr.B has been a trooper with his feeds today running his full amount of 250mls over 2 hrs. I am so very happy he is not only tolerating them but there's been no retching at all today or the real need to vent him. We are going to his full feeds over an hour at 6am so we are really keeping our fingers crossed on this one. If he tolerates his first feed then we'll talk about discharge tomorrow. I'll be a lot more confident bringing him home if he is back to his regular feeds but if he can't handle it we'll make do (as we always do).
For how busy it was I do have to say it was a good day. The big boys and Daddy just left after a short visit (and by visit I mean T goes up and down the elevator and Ry played in the play area). I guess I should just be happy they want and feel the need to see their brother! Mr.B is yawning away in his crib and I'm going to try to sneak out and head home to bed for what might be my last 'real' sleep for a bit. Although who knows? B's been sleeping better here I am holding out a (small) hope that maybe, just maybe his sleep cycle has also been re-set...maybe.
I just wanted to say a Happy (early) Father's Day to my wonderful, amazing, funny (yadda, yadda, I could go on for awhile) Husband, Father and Father-in-law, I love you all to the moon and back!
From Our Home (Hospital Room) To Yours...