Monday, 9 December 2013

Momma Burnout

Hangin' with my Jenn-abelle!
Hospital Burnout, that's the best name I can come up with...Hospital Burnout.

Hospital Burnout: When one has had it with trying to alternately be a SuperHero and trying to be in at least two places at once.  Sooner or later you just have to run out of steam, adrenaline only gets you so far.

I'm happy to announce that this particular stay is at least coming to an end soon so that makes this bout of burnout tolerable.  It is always around the three week mark (not that I don't have small bouts along the way) that I just feel so very D-O-N-E. 
Torin's 'Thankful Garland' (Compliments of Kelsey) wonderful!

It's been a more challenging visit (?) then usual being up on Unit 4.  We've had some truly lovely Nurses but it's really been a huge adjustment, for us and them.  Unit 4 doesn't usually deal with the complex kiddos so it was certainly growing pains on both sides.  The best way to describe it is that it is just a very different atmosphere up on the fourth floor.  I am however extremely thankful that we had the bed and the care in a hospital that is currently running at 124% capacity (no I don't know where the other 24% are sleeping!).

I am also thankful for the meals that we were given throughout (thank you Kelly R, Sumyu, Rachel, and Jodi H) and extremely grateful that my Mother has been here through most of it since the big boys have been so sick.  I don't know what I would have done since Ry is now on his third week off school starting tomorrow.  Hmmm, I guess it could just be plain ol' Motherhood Burnout then.
He's a trouper!

SuperBoy survives yet another blood test! Cutie Pie!

I'm not too sick Mom
Rylan is still sick, still under 'quarantine' per se.  His Scarlet Fever rash has lessened considerably but he still can't be around pregnant women or babies.  We are waiting (impatiently) for Cardiology to call for an Echocardiogram (ultrasound of the heart) to clear him to take antibiotics.  The Dr did a whole work-up of tests, since it's been going on so long, to double check for Rheumatic Fever.  We did have an ECG done but haven't gotten the results but we did also have an Abdominal/Renal Ultrasound done late last week and there is nothing glaring.  His spleen is enlarged and his bladder walls have some thickening but nothing 'life concerning'.  He can't go on penicillin since, on top of the Scarlet Fever rash, he had an allergic reaction.  The other antibiotic, Biaxin, can lengthen the q-t interval in the heart beat so we need to be really sure the heart isn't affected (hence the Echo and the ECG).  Needless to say on top of everything else, it's all just a bit much.

Torin, thankfully, has been on his antibiotics now since mid week (for Strep Throat) and is on his path of 'return to health'. 

My Mom has seemingly been fighting a cold as is I on candid camera here people??

Shake, shake, shake!
Mr.B is however, full of himself and life.  He is so full of 'piss and vinegar' that he's ready to go, go, go.  It is SO nice to have our boy back!!  He is up to his usual tricks, he's making Unit 4 work!  I love to hear the stories of him ringing off his 'call bell' and making the Nurses come running.  In the hospital the call bell, TV remote and light over the bed are all on the one remote.  It also serves as the sound for the TV so often the Nurses will leave it close to his crib for the sound of the TV.  Little do they realize that he knows how all the buttons work and it doesn't take much for him to snag the remote and start pressing them.  I've heard several stories of how they couldn't figure out why the bells kept going off...hilarious!
Um, Momma, you kinda need some water in here!

Waiting patiently for my favourite time of the day!
B's also making leaps and bounds both vocally and cognitively.  His mind is a-working at warp speed.  He takes everything in and just absorbs it all.  He's got the entertainment factor down for the Nurses that have gotten to know him, he holds his finger out for the vitals sensor to go on and will lay down and hold a leg up for his blood pressure cuff.  I think it is also nice for the Nurses who've been around for the past three weeks to really see 'B' and not just smile and nod at me when I was describing what this little boy is really like.

The really good news today is that he FINALLY got taken off isolation.  He's been on isolation for VRE (superbug) forever (it seems) and he's finally gotten back the three negative tests that he needed.  Phew!!  He can actually go out and be social now which is more need for everyone to gown and glove up upon entering the room (although it also worked in our favour to keep him 'healthy' in the hospital too I think).

So why is he still there?  A few reasons: 1) He can't be around Rylan  2) He can't get 'sick' when he has surgery in five days, and 3) His urea levels are high

A very lovely and thoughtful 'feel good'
from Angelica in Fl...thank you! :)
The urea levels were initially thought to be raised because of the TPN (IV nutrition) he was on but he's been off TPN awhile now and the urea levels haven't dropped.  The hope is with extra fluid boluses (water) this weekend his kidneys will be able to flush the excess fluid out and bring the levels down.  I was hoping to 'spring' him on Friday but there was no where to put him and his levels were still too high.  He is now on his regular 'home' feeds so the only thing holding us are his urea levels.

I do however have a 'back up plan' in place instead of coming home, we've got a space reserved for B across the parking lot at Rotary Flames House.  Being as B needs to be back in hospital Friday for his eye/g-tube surgery it, and that he can't be around Rylan it makes the most sense.  They thankfully have room (they didn't Friday if we'd been released that day) so they've reserved a space for him from Mon-Friday.  They are also being very flexible if for some reason he can't be released tomorrow then we can postpone or cancel at the last minute.  I am SO very grateful they exist!!!  For those of you not familiar with the RFH they are a hospice that helps families out with respite when you have a child with a life-limiting illness...amazing!

Showing Grandma my favourite toy!
It's going to be a long week no matter how it plays out and I'm feeling really quite stressed at the idea of his eye surgery.  I'm not sure how to describe it but I'm a little freaked out that it is changing B's appearance (lifting and opening his eye lids) AND that he's been through enough crap lately.  I am however so happy that Dr.B is able to jump in on the surgery time and take out the PEG g-tube and put in the new AMT mini-one tube I ordered from the US (it's now in Chilliwack enroute here to Calgary!).

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It is also Justine's last week for a bit as well as Kelsey's AND my Mom goes home in a week....yikes.  Of course there is also this damnable holiday coming up that people keep talking about...we'll make it through all of it, ask me January 1st how I survived it (I'm predicting a bottle of Bailey's or two).

From Our Home (Unit 4) To Yours...


Wendy Garrett said...

I know you hear this all the time, and everything, but you really are a super mom! You balance things in a way that I can't imagine, even with the incredible support group (family & friends) that you have. Keep up the good work and give Mr. B a sweet hug from all of us in North Texas!

Lia said...

Thank you so much Wendy!! :)