Saturday, 8 June 2013

Balance, What's That

B's cool new turtle from Lisa Mc
I am very thankful for the daily kindness that we receive from our friends and neighbours, my kids have been transported more times then I can count (and taken to other's homes). Thank you Jodi for feeding the big boys and hubby last night AND for dropping off dinner tonight (before rushing off to one of her many jobs)! Thank you to Lisa for her gifts for us, a new book for me (Book of Awesome), toy for B and Skylander's figures for the big boys! We are continually shown kindness and generosity, thank you so much! Life in the hospital is not easy but it is certainly made easier when you've got such awesome friends as we do!

I always have such big plans for our weekends, every weekend and this one was the same.  I always seem to think that my weekends will be filled with all the useful things that I meant to get done in my never happens, I mean never.  Throw B in the hospital on top of that and I'm just plain delusional!  You would think after 19 mths that we'd have found some sort of balance in our lives but really there is none, I'm never in the right place at the right time it seems (a common theme throughout this blog).  The boys have a rough bedtime, I'm at the hospital. Braeden gets unscheduled blood work, I'm at home...never ceases to amaze me!  I look at my friends who have their kids in scheduled activities all weekend and I'm always amazed at how they make it all work!

B had an okay day today, maybe (fingers crossed) mildly better?  Dr. Eustace is on for the weekend rotation which is great because she knows B well.  She was quite concerned at his lack of energy this morning and lack of overall enthusiasm (keep in mind this is a very social, smiley kid).  His head circumference has changed a bit since he was admitted as well and she was concerned about the possibility of there being a Neuro component to all of this.  It's not a dramatic enough of a change to order a CT or MRI but combined with the lack of energy she was concerned.  I guess issues with the guts can also stem from Neuro issues as well.  Enter in two big brothers and B perked right up, laughs, smiles and overall happiness.  She was very relieved to see him act more like B.

Happy Day
We grabbed B up and took him outside so the boys could play on the playground and B could get fresh air and some escape from his room.  As you can see on their faces it was a relief to all three of them to be spending time together.  Michael and I are stressed out, no doubt, but I have to be conscious of the stress that the big boys feel too (hence T's 'broken heart' last night).  I put B down on the spongy ground (it's soft I swear, it just looks hard), and let him just chill and he was determined to go play with his brothers and got repeatedly annoyed at the short leash of the IV.  Thankfully the IV has hung on thus far!  I'm amazed actually since the amount of moving he is doing is putting a good deal of strain on it.  He also likes to do all kinds of twists and turns in his crib and gets himself nicely wrapped up.  He is currently 'supposed' to be going to sleep across from me and he is laying on his back, thumb in mouth but one leg so casually thrown up on the side of the crib (it would be picture worthy if I hadn't already spent SO much time trying to get him to sleep).  Mr.B is very smart and he knows that when he falls asleep that his Momma does a hasty exit to go do fun stuff (like eat, sleep, kiss the others).

Catchin some shade
There was no real advancement in terms of treatment today, we just played it safe today with everything.  Dr.Eustace is wanting to start the TPN drip (actual calories via IV) but because his IV is so small there is a real concern that it will strain it to the point of blowing it.  My poor little skinny boy is dropping weight he doesn't have to lose and he's already down over a pound (we HAD made it to 10kgs, we'll just have to get there again).  There was also talk of clamping his g-tube closed today to see if he would tolerate it without retching but that didn't come to fruition either.  I think it was more of a concern that he's been still so lethargic compared to his usual self.

Fresh air energy spurt
B's cough is also getting considerably worse, he is sounding like a seasoned smoker.  His lungs still are sounding pretty clear with air entry and he is still on room air (yippee!).  He did have a d-sat with me here today but he was also able to recover it on his own without any blow-by oxygen (amazing).  We might, might, might leave this hospital oxygen-free...wouldn't that just be astounding!

Tomorrow is another day, another day of my back and forth journeys trying to please all the males in my little family!  Hopefully Mike is on the mend and he can come up to be with B soon (he's been fighting a cold and can't come into the hospital since he's not well).  I love the fact that we have such stellar technology as well, as we got to Skype Grandma and Pappa the other day from B's room and we Skyped all three of my Sisters in Chilliwack tonight so that B got to have a little 'chat'.  It makes the feeling of alone-ness a little less anyhow (those darn mountains).

As much as Michael and I are feeling stressed and strained to the limit there are (as always) so many things to be thankful for.

From Our Home (Hospital Room) to Yours...


Arlana said...

Lia, never under estimate what you do each and every day. Although some of us have kids in activities, nothing and I mean nothing compares to what you and the boys go through each and every day. I wonder how you do what you do?!!! It is pure insanity to even start to understand how you get through your days. You are a source of inspiration and strength and I am always amazed by you. I know in my heart that Braeden with get through this and life will kind of get back to normal until the next curve ball comes your way which you will tackle and again get through. Much love from our house to yours!

Lia said...

Thanks so much Arlana! :) <3