"Begin today and write in it your goings and comings, your deepest thoughts, your achievements and your failures, your associations and your triumphs, your impressions and your testimonies. I promise you that if you will keep your journals and records, they will indeed be a source of great inspiration to you, each other, your children, your grand-children and others throughout the generations. Remember, the Savior chastised those who failed to record important events." --President Spencer W. Kimball

March 17, 2012

Baggage

As I've mentioned before, when baby Katea finally got to come home, she came home with quite a large amount of baggage.  Being on oxygen actually requires a lot more than most people think, so I thought I'd blog about it.....on February 6th, when we finally got to bring our little miracle home....we also brought this stuff with us:

Her pulse/ox monitor
Baby Katea is hooked up to this monitor 24-7.  It measures her oxygen saturations and her heart rate.  The red number on the top is her sats and the green number below is her heart rate.  Her saturations need to stay between 88-98% (technically she can go to 100% now, since her eyes hit zone 3) and if goes out of that range, it beeps and beeps and beeps and beeps.....this little monitor took A LOT of getting used to.  Seems like it goes off all the time.  My kids have learned where the silence button is and they constantly push it (after asking me if it's ok)  We've kindof gotten accustomed to it now and it doesn't even phase us anymore.  I actually really like it, and maybe I rely on it too much.  The sensor that goes on her foot and gets plugged into the machine is like $38 for one.  Our insurance only allows us to get 5 per month...that means I have to be really careful that they last long enough that we don't run out.  Well, at the end of last month we ran out.  I was freaking out because the monitor kept beeping "bad sensor" "bad sensor" I knew we didn't have anymore.  Baby had an appointment the next morning so I decided we would just wait until the next morning when we were out and about to go get some more.  I turned the monitor off.  I didn't sleep at all that night, just worrying and panicing that she was getting enough oxygen.  She was, but I didn't have the numbers on the monitor to tell me.  I was so relieved when we finally got some more and had that monitor back.  I will never complain again of how annoying it is, because after that heart-wrenching experience....I LOVE that monitor...haha!

Her oxygen concentrator
This machine uses electricity and it takes the oxygen from the air and turns it into the oxygen that she needs....it actually is so nice to have because it saves us from having to go through tons and tons of oxygen tanks, especially since she's on oxygen 100% of the time.  This particular concentrator is a little noisy and at first it was really annoying, but now we're all used to it and it's actually a soothing mechanical sound that I think helps baby sleep better.  We use this concentrator pretty much all the time when we're at home.  The only problem with it is that the lowest setting it can go to is 1 liter of oxygen per minute.  Since baby is on less than 1 liter, we also have this....

Baby's pediatric flowmeter
This just takes the liter of oxygen from the concentrator and gives you the option to turn it down into the smaller measurements that baby needs....like 1/2, 1/4, 1/8, 1/16 & 1/32 liter.  Baby is consistantly needing 1/8 liter per minute.  So the hose hooks from the concentrator to the top notch of this pediatric flowmeter and then the hose that hooks to the bottom of the flowmeter is what goes into her nose.

I was told when I was still in the NICU that it wouldn't really be too much of a pain in the butt because they have like 50 foot tubing that we could use so we could keep the concentrator in one room of the house and the hose would be long enough to walk with her from room to room without having to move it.  That is NOT the case.  The people who dropped off the oxygen said that the longer cords work really well when people are on higher levels of oxygen, but it doesn't really work with less than 1 liter because the oxygen doesn't travel fast enough.  He highly recommended that we just use a shorter tube and not risk her not getting the oxygen she needs.  Ugh!


What that means is that everytime we have to go from one room to another, its actually a really long process.  All the things listed above, plus her needs to be moved.  At first I thought I'd be able to carry everything at once.....yeah, not so much....this is what happens when I try that....
OUCH!!!
I tripped over the tubing and wires I was carrying and in an attempt not to fall over because I was holding baby, I kicked the oxygen concentrater really really hard.  I dropped, spit out a few choice words, laid baby down, and cried.  OMG it hurt so bad, I thought I broke my toe.  It took like 2 weeks to finally heal (and it's still sore) but since then we just hang out in one room all day long, and if I have to move her...I have a routine.  First I make sure her stats are good.  Then I unplug her oxygen.....since I know she can last up to 25 minutes max on her own without the oxygen, I have to be fast about it.  I unhook her oxygen, take her and the monitor to the other room.  I lay her down there then go back to the original room...unplug the concentrator from the wall and carry the concentrator and the flowmeter and all the tubing to the room that baby is now in and hook her up.  It's quite a process, so we usually only move twice a day...once from the bedroom to the living room in the morning, and then at night from the living room back to her bedroom.   

Baby came and laid on our bed the other day, and this is what she looks like with all her baggage....

Besides the concentrator, the flowmeter and the monitor....we also have several oxygen tanks
(These are only some of them).....the large ones are for 'emergency backup use' and the small ones are the ones we travel with when we have to leave the house.  I've actually used all the large tanks that we've been allotted this month because I would use those instead of dragging all her equipment around....but now that those are gone, and we don't get refills until next month,  I'm back to my routine.

Just imagine all the stuff I have to drag around when I take her anywhere.  Her oxygen tank, monitor, diaper bag, albuterol pump....and baby Katea.  Let's just say I NEVER go anywhere without the stroller.  Whoever invented the stroller that the carseat can hook to is a genius!  That's the only way I'm able to get around!

It's a lot of work....but anything for our little miracle!  :)
Love you baby girl!

3 comments:

Angie said...

DANG! That looks like it hurts!! I'm so sorry! That's the sign of a good mama that will sacrifice so the babe didn't get hurt in the transport!

I TOTALLY GET YOUR PAIN! I sometimes WISH that our (STUPID) insurance would let us have a concentrator. They won't so we are tied to the O2 tanks 24/7. Charly is still on 1/8 as well, and some days I feel like she will never have strong enough lungs to work without it.

I'm not sure what you think...but I move Charly into the living room during the day, and then back into the bedroom at night. I guess I do it more for myself and my sanity, but also to keep her brain going. It's a pain, but that's just what I do. Will they give you more portable tanks? Maybe you could hook her up to the bigger tank during the day and move that out with her (it's a lot easier than moving the concentrator).

Anyhow, I sure love ya, and please call me if there's anything I can do for you!!

Hugs!!

ANNA BANANA said...

Wow Monica, I give u mad props, that's a lotta work!!! U are such an optimistic person, such a great trait to have :)

Melissa said...

Wow, that is a lot of work moving all that equipment. What a job! I can understand why you would stay put in one room.
Oh my goodness, look at her sweet face! I know you get to see it and kiss her all you want, but I would just love to squeeze those cute cheeks!
I am sure all the noise of those machines is stability for you. I know we still sleep in our home at nights with noise makers. Without them we can't sleep. I am sure it is comforting to hear all of them.
Ouch! I can't believe your toe. Hope it heals quickly. That must have hurt soooo bad.
Glad to hear that Katea is doing well. She is darling! Love ya!!!!