Friday, July 18, 2008

Oh the air we breathe!

Lots of people have asked about Cameron and what life is like having a baby home on oxygen and an apnea/bradychardia monitor. In particular the questions revolve around what equipment we have, how it works, and how we are able to get around the house and out in public with him. I thought it would interesting for people to know how this all works, and I've included some photos to help.

I explained in a previous post introducing the boys, preemies will often need the oxygen assistance that is already damaging their lungs in order to survive. This can cause pulmonary bronchial dysplasia and/or chronic lung disease. Cameron just needs 1/4 of a liter of oxygen per hour to get by; a puff of pure oxygen. Eventually his body should grow enough so that it will grow new lung tissue faster than the oxygen can damage the existing tissue and we will wean him off the oxygen.

At our first visit the pulmanologist said it's really up to Cameron and how well he grows but he felt confident Cameron would only be on the oxygen for about another two months, but I'm thinking it will be three because he's a "lazy white boy" as they say in the NICU. :- p

In the NICU we had the option to get the dexamethasone steroid shots for him but this steroid so controversial that we opted to do that only as a last resort. Our pulmanlogist felt that we made the right decision. He said that he will only suggest dexamethasone if it's life or death and even then there are lots of waivers and acknowledgments to sign before it's used.

Is the equipment difficult to use? No, it's really quite simple, once you get over the initial worries and become familiar with everything. There are only two buttons on the monitor and the oxygen tanks and compressor are either on or off.

Here's the apnea/bradychardia monitor.

It's about 5lbs with a bag on the side where we keep extra sticky electrodes, lead wires, and a pen and paper to write down the details of each instance when Cameron has either a brady or an apnea. Bradys or bradichardias are when his heart drops below a certain rate. Apneas are when his respiratory rate drops below 60 breaths per minute based on his size. Some of the irony in all of this is that you're not supposed to have strings or wires or tethers near an infant or toddler longer than 7 inches as they are a strangulation hazard. But out of necessity for Cameron's medical needs we have both our boys around tubes and wires much longer than 7 inches all the time.

The oxygen:
Our main source of oxygen, and what Cameron is tied to most of the day, comes from a machine called a compressor that actually creates oxygen and is electric. It's about 2ft tall x1.5 ft wide on wheels with a small distilled water tank that humidifies the air. This is really heavy, maybe 50lbs? and we keep in in the nursery where the baby spends most of his time. The compressor is loud with a constant rumble and it generates a lot of heat so we have trouble keeping the boys room cool. The compressor sucks in room air and strips everything out of it and pumps the pure oxygen down the patient's tube to the nasal cannula in is nose. This has a 32 foot tube to the baby so we can go from the baby's room across our 6ft hallway and into our bedroom about another 10feet to the Pac n' Play crib. It's funny, but everyone always takes a deep breath once the machine has been turned off.

The little portable tanks for traveling we have (M6 I think they're called and we have 8 of them) are no bigger than a large champagne bottle with a thermal bag over it and weighs maybe 8-10lbs?? Which is a pain when you're carrying a 7lb baby plus the apnea monitor. The portables can last up to about 12 hours at 1/4 liter of oxygen. I can't remember how long the large emergency tank will last but I know it's at least 16 to 20 hours because that's what they told us when they delivered it.

Lastly we have one tall skinny tank on wheels, the kind you see the old ladies with in Vegas or Atlantic City. This is our emergency backup if we lose power for an extended time so we can call and they will come out with more tanks for us if we need.

What other issues are there to having Cameron on oxygen? Camerons lungs are inflamed and filled with fluid making it difficult to breathe even with the oxygen assistance. To work around that he has to take lasiks to flush out the fluid. But the catch is that it also flushes out the needed sodium in his body. So he gets 2ml of sodium chloride (aka salt water) in his bottle three times a day. This does not make for a tasty bottle.

Is it difficult to get up stairs with the baby, apnea monitor and oxygen? It's awkward and it's good to have an extra pair of hands until you get the hang of it without feeling like you're off balance.

Is it impossible to go out of the house with all these things? This is how we go out in public with Cameron in the stroller (and Evan too). It's really the only way to go any distance with him since his gear and the car seat and the diaper bagand he are all very cumbersome.
We get cabin fever often and because it's a hot summer season we've made a point to get out at least once a week for things other than Doctors appointments . We have it down to an art getting the boys places. It helps to have a stroller with a very large basket underneath.

Other issues I didn't expect about having an infant on oxygen:

  • It's very difficult to tape the nasal cannula tube to a tiny, squirming, angry baby. I've watched the nurses do it a thousand times but they make it look easy.
  • Bath time is tricky with the cannula tube and it's a good idea to have extra helping hands.
  • It's tough enough with twins so you need to be very organized and coordinated but when you have one on oxygen, even a singleton, you really need to be very coordinated and organized with your travel distance, schedule for the week and tank supply.
  • Don't have open flames in the house (no birthday candles) or put vaselene or petroleum jelly on the baby as it's a conductor if ignited by spark. I know, you're thinking why would there be a spark near the baby? I have no idea, but the guy who trained us on all of this said a spark can ignite the oxygen and petroleum jelly is a conductor for the flame and so now I obsess over sparks too.
  • The compressor really heats up the room fast and is really really really noisy, so much so that it's a deep silence when the thing is turned off.
  • I miss my living room and other parts of the house, but if you don't mind lugging everything around with the baby from room to room then it's not impossible. I spend most of my day in the nursery taking care of the boys, but it's not all because of the oxygen. It's just where they are and where their stuff is, so we spend lots of time there. I hope to begin exploring our house with them more soon, especially once Cameron is off the oxygen.
What to I dislike more, the apnea monitor or the oxygen? Hands down the oxygen is the bigger pain to deal with. Besides which, once the oxygen assistance is gone then soon after the apnea monitor will go too!

UPDATE EDIT: I often refer to my good friend from PreemieParent's blog "Parenting in the NICU" for many subjects and this is one of them. Here's the link to her post on having a child on oxygen that you may find very useful.


Annie said...

Wow, it wasn't till now that I have a sense ("a small one I'm sure") about what its like to have a baby on oxygen. This was very informational although I know you didn't want to become such expert on this. You guys are doing a great job with the twins! I hope Cameron is off the oxygen soon! BTW, I love your blog!


Trish said...

There's already been talk that Robbie may have to come home on oxygen, so I read this with GREAT interest. Thanks for sharing!

Julie R said...

What a great,informative post. I wish I'd had this sort of resource when my daughter came home on oxygen almost 3 years ago.