Bubbles the Fish

Albuterol treatments with ‘Bubbles’ the fish-mask. She actually seems to enjoy this one.

20120625-085250.jpg

Categories: Uncategorized | 6 Comments

Weird Science

Categories: Uncategorized | 4 Comments

Two weeks since our last post?

Its been hard to update, but here goes…

Elie began throwing up after most daytime feeding about a week and a half ago. She was still ok at night however, as we attempted to work with GI on getting to the root of the vomiting. Then I heard her coughing in the middle of the night and had to scramble for the suction machine to clear her out. At that point we started keeping her pulse-oxygen saturation monitor on at all times. Unfortunately, we could not keep her oxygen level up at a comfortable level with just suction and the cough assist. As a result, Bean is now on supplemental oxygen 24hrs a day.

The vomiting seems to be improving a bit since…Nurse Agnes started last week! She’s been a great help getting us more comfortable with the machines, and hopefully soon will allow me a break. Nonni was here all week last week as well which let Elie have an extra playmate besides old Mom and Dad.

Elie is a bit tired today after a particularly rough night. She’s wakes up every hour or so these days, which has exhausted us all.

So now we are tangled in even more tubes which threaten to confine us to the house. But we’re fighting it! About to take a Fathers Day walk with Daddy, just now involves an oxygen travel tank, some hoses and an oxygen monitor.

Sorry about the delay in posts, not to mention Elie’s big THANK YOUs for the books, rainbows and gifts from Amazon!

20120617-173520.jpg

Categories: Uncategorized | 12 Comments

Weekend adventures

Categories: Uncategorized | 3 Comments

What we’re reading.

Rebecca Perez asked what we’re reading today– we just got three great new books:

Click Clack Moo, Cows that Type from Bitsy

B is for Beer from Jes

Choo Choo Noises book from Khristie

Great stuff!

20120601-195842.jpg

Categories: Uncategorized | 5 Comments

Vocab we never wanted to learn.

Words I’ve begun to hate hearing… Machines that are infiltrating our lives with wires and tubes…

———

Bolus: the medical word for a ‘meal’. In contrast to the continuous slow volume feed that we do overnight. Elie currently gets 4 bolus feeds per day, then continuous drip for 9 hours overnight.

———

———

Pulse-ox: Heart rate and oxygen saturation monitor. Magically measured by sending light through Elie’s big toe.

———

———

Insufflator-Exsufflator : Our ‘Cough Assist’ machine. Elie’s nemesis. Forces air into her lungs through a mask, then sucks it back out, mimicking a cough.

———

———

Atelectasis : the collapse of part or all of a lung.

———

———

Contracture : painful tightening of tendons due to disuse of opposing muscles.

———

———

Percussion therapy : beating the chest wall of your sweet baby with a rubber cup to loosen lung secretions.

———

———

Katy Beckett Waiver : a Medicaid extension available in Georgia to help families who make too much money to qualify for standard Medicaid but still need help paying their medical bills.

———

Categories: Uncategorized | 6 Comments

Happy 5 Months, Elie Bean!

Categories: Uncategorized | 9 Comments

Beach pics!

 

Categories: Uncategorized | 6 Comments

Crib mattress?

Anyone have a crib mattress they’d like to get rid of in the ATL? I’d like to raise Elie up in her crib at night so I can get to her more easily (we’ll just be using it like a box spring, so condition really doesn’t matter)

Categories: Uncategorized | 6 Comments

Where we’ve been

We got home Sunday after a fabulous trip to Charleston to be there as Elie’s aunt, Dana, married Elie’s (now official) Uncle Nick! Elie got to see most of her family, hang out on the beach, dress up fancy, and meet some wonderful new friends.

Monday we had an appointment with the muscular dystrophy clinic and then a follow up with Dr Brooks (have we mentioned how much we love this woman?). She clarified some discrepancies in therapy techniques we learned in the hospital. We’ll be administering percussion and then the Cough Assist at least twice a day moving forward.

Yesterday I met with Bayada nursing care, which went very well and I’m very much looking forward to the help!

Today we are headed back to the surgery clinic since Bean has had some leakage/irritation/pain/interrupted sleep since we got back and we want them to evaluate her tube for size/infection so we can all feel and sleep a little better.

So it’s been a busy week and half, but I promise to post pictures from last week soon!

UPDATE: back from our appt– Elie’s T-button stitches were all infected. The doctor went ahead and cut them all off even though they were supposed to dissolve. Elie seems to already feel so much better with them off! Antibiotics to be purchased and hopefully will get rid of the rest. To anyone considering GTube with the t-fastener buttons, I do not recommend them, just go with old fashioned stitches, so much easier to clean, with less irritation.

Categories: Uncategorized | 5 Comments

Blog at WordPress.com.