Tuesday, July 15, 2008

Another night in paradise. :P

Ever since Faith has been home there have been many "what if's" that I have played over and over in my mind. One of them played out in typical Reming fashion last night:

Before go into detail about the "incident" here's some background on our day yesterday. We had a new roof installed (compliments of our insurance agency)on Monday. The roofing company said if they worked from dawn until dusk they could do it in one day, which sounded great to us! We knew Faith wouldn't tolerate the banging all day so we headed out very early.

As you can imagine traveling with a ventilator dependent child is not an easy task. As one of my fellow trach/vent moms called it our "portable PICU" is quite dramatic. To make Faith's vent potable we have to change the tubing, which is a pain in the neck in itself. One of us "bags" (manually breaths for her using a resuscitation bag) while the other switches out the circuit (tubing). Next we have to grab the oxygen tank, the battery for the vent, the suction machine, the resuscitation bag, feeding pump, spare supplies (extra trachs, ties, g-tube stuff, etc.)oh yeah and somewhere in there is a diaper bag (which we usually end up forgetting)with all of the typical stuff babies need. On this particular day we also traveled with the ventilator stand and heater for our stops at Grandma's house in between outings.

We probably went overboard, but we had fun taking Faith to the Children's museum, the mall, Kohls, and back and forth from my mom's house. We probably loaded and unloaded Faith 12 times into the car (my fellow trach/vent families can appreciate that feat..) It was a fun but exhausting day. We were anxious to get Faith back to our house to get her set up on humidity and because it was one of the very few nights we had a night nurse! Woooowhooo!!

So we got home and unpacked everything (once again the portable picu list in reverse...) set up her tube feed and just as Faith finally fell asleep it happened: Total darkness. Pitch black. The power is off.

When I was younger I secretly loved it when the power went off. It was always exciting. We would light candles and bring out the flash lights. The anticipation of not knowing when the lights would come back on was always thrilling. When the power abruptly came back on I was always a little disappointed. This was not the case last night.

We have two 9 hour back up batteries for Faith's ventilator (the 9 hours is used loosely..our traveling battery which they say can last 8 hours always seems to lose it's juice around hour 3....) Anyhow so this wasn't really the problem. The problem was that Faith's heater does not run off of a battery. The heater is what provides humidity to her trach, something that is critical in living with a trach. If this were any other day where Faith was at home and on humidity the entire day we wouldn't have worried so much. But on this paritucalr day she had been off of humidity the longest she's ever gone. Her secretions were starting to get thick....this wasn't good.

We were sure that it would come back on quickly...as the minutes passed and passed we called Excel (our energy company). When you have a child that is on life support equipment before hospital discharge you fill out a form that is sent to Excel detailing your child's condition, alerting them of the energy dependent needs of your child. We found out this form is meaningless. There was nothing they could do. No back up generator? Nope. My mind raced to a story I read about a month ago of a woman who spent 60 some years in an iron lung (another form of mechanical ventilation) only to die after a storm wiped out the power in their home.

We finally got an answer from excel- they estimated they would have power restored around 2am, however this was not a guarantee. We knew what we had to do. SO we re-packed our portable PICU (in the dark mind you, once again trach/vent families will appreciate that!) and headed back to my mom's house 20 minutes away. Poor Faith. What a day! Poor us, we cancelled our much needed night nurse.

While driving we realized that almost every block in our neighborhood had power. it was just our block and just our luck!!!

It wasn't such a bad night- All three of us (well four counting Elway) slept on a blow up mattress on my mom's living room floor. We have never slept like that with Faith- her in the middle. Yes it was a challenge with all her tubing but we made it work. In the morning we had to scoot on out of there because it was Tuesday- Faith's busiest day of the week (she receives occupational, speech, and physical therapy all in the same day...)

So that was our drama. I know I probably made it sound more dramatic then it was, but it was an ordeal. Especially when you are tired beyond means. This morning as Brian loaded the heavy vent stand back into the car he sighed.."I'm so ready to be done with all of this!" Me too..I said..me too.


Marissa said...

Oh guys, I am so sorry that happened to you! :( It is no easy task to get Marissa out and about, but you guys have it about 30 times harder. And if our power goes out, we can at least put an artificial nose on her for heat and humidity during the night. And then for it to happen on the one night you had a night nurse, AAAGGGHHH!!! Are you guys serious caffeine junkies? LOL! I will send up some strong prayers for drama free and restful days and nights to come.

Looking forward to seeing you at the party on Saturday!


Shylent said...

Wow.. You guys sure had one heck of a day ! Isn't always when you are completely exhausted something like a black out happens ?

Big points for packaging in the dark ! I think it's a pain in the tush in the light and we are vent free, lol.

Ann said...

Nothing like initiation by fire. Don't sell yourself short, what you managed to accomplish yesterday was huge. It was a big enough deal to be out of the house all day with Faith and then to have to repeat the events that night, well, it qualifies as "dramatic" in my book. I'm assuming you are not provided with a back-up vent since you have to change out the vent circuits when you travel. Here in Arizona we wouldn't get a back-up vent either if we were strictly Medicaid. Fortunately, we have private insurance and so far, it covers a back-up. But I know the day will come when we'll have the back-up vent pulled. In the past, that would have made me crazy just thinking about no back-up, but knowing that it's do-able, albeit a pain in the butt, makes the prospect less daunting.

Also, we had a special battery pack made that is in a suitcase type box and it has three plug-ins. We take it with us in the van when we drive Jack to St. Louis so we can plug in his heater. The battery life is about 9 hours, but depends on how many thing you plug into it (and it's rechargeable). You might want to check into something similar for those "what if" situations that always seem to happen. I think we got ours made at a "Battery-Plus" store. We've never invested in a generator. I figure, we'd probably just do what you did and go spend the night at a family member's house.

I hope you have a very non-eventful rest of the week (month and year). You've earned it.

Kristie said...

What a crazy day/night. I am glad you go through it. I hope you were able to nap today.

Janay said...

Wow, what a busy day! Sounds like Faith was a trooper for the whole thing. I'm not sure Milo would tolerate that much activity in one day :0) Good job with the power outage, that is one of my big fears at this point and I'm hoping we will able to avoid it.

See ya Saturday, we are planning a really fun time!

Anonymous said...

WOw you hate to laugh at all but I kinda did with a WHAT NEXT!!! My goodness what a night!

Things we ALL take for granted and never think that it is a big deal for the electricity to go out and to have this happen to y'all! WOW makes you think!

Faith and YOU GUYS are troopers.

One day things will be different. Little strides daily..I HOPE you guys take a day for YOU ..even if a dinner out for a couple of hours!

We love you
Aunt Susan and gang

PS Steve gets home next Tuesday YEAH! Then Mike leaves for 35 days for training then in Nov Uncle Mike will go to deployed for 6 months..I will keep you posted and will need LOADS of prayers.

Dana said...

I can totally sympathize with the power outages. Ours goes out way too often and we are often forced to my mother's in the middle of our LIFE.

Wow, loading any of the equipment in and out of the car 12 times in one day is a hugh feat. Developing your Wings?
Sounds like you gave Faith a fun day out. You did it and got through it. The hospital social worker told me---We do hard things because we have too. No one is giving us a choice. Brownie points for making it enjoyable along the way.
Hang in there. Perhaps things will be better for the rest of the week. :)

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