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
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....
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!