Sunday, April 17, 2011

Day 3-whiny + pitiful = exhausting!


love the tongue!
Sunday was a long day, especially since we didn't get to bed until after 3am because Ethan could not get comfortable and situated.  He was pretty sad-if we held him, he wanted in bed.  Once we put him in bed, he wanted to be held....and so on and so forth.  Exhausting is the easiest way to describe it.  For us and for him-since he's the one who doesn't feel good, I'm sure it's way worse for him!

Brian, Parker, my Mom and I went to Hailey's last volleyball tourney of the club season, while Grandpa Chuck hung out with E for a while.  Hailey's team took 3rd place and got bronze medals-and we got lots of great pics-will post soon! 

The Purple Team decided to go ahead and do an IVIG treatment on stinky, and started the Gamunex at 10:30 this morning-it just finished, and they will have one more set of vitals to take on him in 30 minutes -then he can be left alone to sleep.  Since he has never had an IVIG treatment, it had to run over 12 hours with vitals taken every hour-whereas normally it would only take 6 hours, or an hour if we do it subcutaneous at home.  I don't care how long it takes-as long as he's getting it and showing no signs of an adverse reaction-he can continue it at home! 

His oxygen has been weaned down to 1 liter-and he's maintaining in the low 90's.  He did have a bad episode this morning where he would only mouth breathe, and they had to put a mask on him and crank him up to 3 1/2 liters for a few hours.  He seems to be over that little meltdown now thank goodness-but that doesn't mean he spared anyone any other temper tantrums-those seem to be the norm today.  I'm hoping he wakes up Monday morning in a much better mood.  The only consolation for him right now is for us to ignore him and crank up his Taylor Swift CD-did I mention how much he LOVES Taylor Swift.  Turn on her new CD-thanks Phillips Family for getting it for him for his b-day-and he stops wimpering for a while, or at least long enough to listen to his girlfriend sing for a while! 

So that's where we are hanging for now-still no virus panel results back, and the adrenal insufficiency hasn't been determined yet to be worse or not-we should find all of that out tomorrow.  He's not out of the woods yet, and I will update as we know more.  In the meantime-Ethan sleeping means Mom needs to sleep, and he's sawing logs right now-so that 's my cue....

Please keep Brian's long time childhood friend Steve in your prayers, his Mother Marty (and like Brian's second Mother) is fighting Ovarian cancer right now, and things are looking pretty grim.  They live in Tennessee, and as much as Brian would like to go down there and show his support, we kind of have a full plate here right now.  Steve's dad, Roger, was my and Brian's wedding pastor and they have a very special place in our hearts, so please keep them in your thoughts and prayers for peace and comfort in the coming days. 

love, hugs and prayers,
K

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