Thursday, July 11, 2013

Day 11... this is when it gets hard

A throw-back to the first 4 months in the hospital when Dominic first got his trach and vent.  He's come a long way, praise God!

The first week of an admission is pretty easy.  Everything is new, you've got enough energy, it's just easy to be nice.  Then you start to get tired.  The restless sleep catches up to you.  The un-natural splitting up of the family wears on all the members, especially the kids.  The little things that are done, or left un-done, at the hands of the hospital employees start to wear you down.  It doesn't take much to crack you.  The little things that are really no big deal are blown out of proportion and you start to feel on the verge of becoming a crazy lady... that mom.  Unfortunately, today I was that mom.

Last night the IV team came in to get a line started on Dominic for his broncoscopy this morning.  Each nurse tried twice and blew all 4 veins they tried.  I finally called the fourth try after she dug in his arm a good 30 seconds.  No matter how many times you see this done to your child, it never gets easy.  This from the girl who has treated kids with nasty, smelly wounds and burns with a stone-cold stomach... I tremble and feel faint and nauseous when Dominic gets an IV or blood taken.  But, you would be proud... neither nurse got punched, yelled at, or booted out of the door.  I've come a long way you see!  Finally just as we were getting ready to go down to anesthesia to see if they could get a vein, our nurse came to the rescue and got an IV started.  Dominic just cried through the whole thing and once it was finished and I picked him up, he passed out with exhaustion.

This morning he had a flexible broncoscopy in his room.  The bronch team filled the room along with nurses while we waited for the doctor.  I felt like a protective mama bear holding Dominic, refusing to let them have him until the doctor arrived.  I sang latin hymns to him while we waited.  Everyone was quiet and he smiled.  The bronch showed he still does have laryngomalacia but it is slightly better than last year.  This basically just tells us he still needs his trach, which we totally expected.

The rest of the day was hard.  Day 11 in the hospital is hard.  Dominic has needed oxygen (no vent though!) for the past 3 days and hasn't been able to maintain his saturation's without it.  This is no big deal I guess, at least he is still vent-free.  In the midst of a killer headache, lying down with my head covered b/c the light was hurting my head, the dietitian came in.  Poor girl, she didn't know what she was walking into.  Day 11 + throbbing head = not a happy momma.  Luckily for her I felt too bad to respond to her claim that Dominic was doing so well with his weight management because we had a dietitian orchestrating his menu.  I would love to have a blended diet-experienced dietitian helping us but alas, there are none to be found close.  When we actually hit a road block I'm going to need to go to Dallas.  I just nodded and slipped my head back under my covers and thought to myself "yep, because all the hard work we put into his food, the calculations we do, the close watching of his growth-velocity curve does no good to him at all."  Crazy.

But as all fairy tales end, so does mine.  My knight came to save the day.  Mike came up to the hospital and sent me home to rest and re-coop a bit while he's on watch.  Thank God for that good man... I sure do love him.

So, here's to another week and a 1/2 in the hospital.  I just keep thinking about the families with kids in for months at a time.  How do they do it?  How did we do it for 4 months?  I can't quite remember, but I do know we were quite tired but sustained by our amazing family and friends as supports.  We can never pay back the time spent, the effort given to us by our support system.  They visit, giving their time, they cook meals, they help with the kids, they pray.  That's how we did 4 months... it makes another 1 1/2 weeks look like nothing.

In Them,

Wednesday, July 10, 2013

Dominic Update- Yeah for breathing!

Because we have had a night nurse almost the whole time we have been home from the hospital after Dominic received his trach and vent, I have not had too many nights sleeping next to him.  You would think a baby with a trach would be quiet through the night but I have learned what he lacks in vocalizations, he makes up in beeps.  My little man beeps all night long.  High heart rate, low oxygen, apnea, too fast breathing, too slow breathing, apnea, leads off.  This monitor here in the hospital is loud too... like waking up to a fire alarm a couple of times every hour!  But, with all that being said, I'm happy.  I'm happy to sleep in the same room as my little man, to see his little feet with one sock on and one sock off rest on top of the bed rail.  I'm happy to hear him squirm and get mad at me when I touch him.  We're still not sure if his problems are genetic, but I can tell you one thing that IS genetic... his dislike of being touched when asleep.  Mike and I both don't play well with others when it's time to sleep... he inherited that from us!

Dominic has been off the vent since Sunday and has just been breathing like it's no big deal.  He has energey during the day which shows he is not too exhausted by the extra work of having to breathe on his own.  For the most part he has been able to maintain good oxygen levels (except last night he needed a little boost).  His good looks are enticing all passer-by's to coo and talk with him and all the nurses can't get over his bright white-blue eyes.

The plan so far is for him to have a bronchoscopy tomorrow where they run a tiny camera down his airway to check the progress of his trachea then on the 18th have eye surgery to correct his ptosis (droopy right eyelid), a MRI, an ABR (sedated hearing test), and nerve conduction velocity test.  This last test is to check how his brain receives signals from his nerves.  They will place electrical impulses on his feet (while he is sedated) and record what his brain does with those impulses (I think...).  This test is because he has hereditary spastic paraplegia (a genetic condition) that often results in the complete non-use of ones legs eventually). 

Anywho, there you go.  I've got a handsome boy, a happy man, an independent breather.  I'm one lucky momma. :)

In  and FOR Them!

Saturday, July 6, 2013

Vent Weaning Week 1: Success!

Dominic's new favorite toy, Moosey, b/c all stuffed animal names should end with "y"
As I type this blog, my little man is sleeping in his hospital bed vent free with his Daddy watching over him.  We were admitted Monday and have gone down on our hours on the ventilator by two hours each day until we came to today when we completed his last 2 hour stretch on the vent.  We will now leave the vent off completely and see how he responds.

I have no fears about him failing this vent weaning trial because so far he has rocked it like **insert your favorite rock star here**!  He has had a few times where his oxygen levels drop but they pop right back up without intervention... which technically don't count against him.  If he keeps going like he's going, we should be going home vent free within a week!  WooHoo!

I'm exhausted, and you're probably bored so lets just cut to the chase.  Here's what you really want anyway... pictures of the cutest trach baby in the whole wide world!  :)

His speech therapist and PT would be happy... eating mashed potatoes while in the standing frame!
Kisses to Moosey... I was jealous
Aunt Wendi giving him a bath (this is the best picture I could get).  Dom's got my Granny's legs :)
Everyone loves MiMi cuddles!

 Mary Grace putting her shoes on her defenseless brother

And... more Moosey love