Life with oxygen

"The Missile" as it is right now.

I thought I might record some of my thoughts about our experience with having a child who wears oxygen 24/7. Burke has been on oxygen since June 2008 because he has congenital heart disease and as he grows his oxygen saturation levels are slowly declining.

Our lives have been changed since dealing with the oxygen. We have a couple of names for our dear friend oxygen. "The Tank." "Flammable object." According to my sister Liz it is "the missile." Tyler coined it "pain in the a**" (sorry mom and dad- it was way too funny and way too true to leave out). And it is so true. I don't mean to be the pessimist but we have had to deal with Burke's very heavy, awkward, and totally pain in the butt side kick for four months now. We know that it is very necessary, we know that he is benefiting immensely from it, but I can't rave about it all the time when it is a lot of the times the cause of frustration at our house.
At first, it was hard to deal with because it was a new thing to all of us. Burke kicked and screamed (very loudly) at the hospital when they wanted to put it on him the first time. We figured out the trick was to put on the cannula (that is what the tubing is officially called, there will be a test afterward, so please pay attention to the new terminology) without any oxygen blowing through it. We just let him get used to the fact that there was some little plastic tubing up his nose. Then once he was used to it we turned on the oxygen flow. Because it is startling at first to have air blowing up your nose. Anyways, I thought I was pretty cool because I was the one to tell the doctors and nurses that at the hospital. I think I just stole the idea from Ty when he tried it a couple of months previous when we were given oxygen for Burke, but he ended up only needing it every so often.

When we left the hospital in June we were convinced we could do this. Master the oxygen. Little did we know what lie ahead. No one ever considers what it takes to successfully deal with oxygen tubing. I didn't at least, but it is a learned skill. It takes practice. Because there were many times when our poor Burke was pulled back or had his ears totally bent over because the cannula was being pulled too tight. It bothered him at first. But now, he is mostly immune to it and can go pretty far and pulls it pretty tight on his face so that his whole face is contorted. I know it is totally sad, but I say good job, Burke, for not letting anything, and I mean anything, get in your way of what you really want, even if it is only a little toy you are sacrificing your face over.

Gradually, we got pretty used to Burke and the tubing. I would just have to be in the same room as him at all times. No biggie. I couldn't get anything done, I couldn't do anything around the house and I couldn't go anywhere. Not a problem. (wrong!) But we did managed because then he was only crawling. He was mobile, but not as mobile as he is now.

Then there's night times. How does a child sleep with oxygen on? Very carefully. The second I put him in his crib he automatically pushing the cannula up on his nose and does not let me put it back in his nose at all. Sometimes when he is totally out he can stand to let me put it back in his nose but for the most part the oxygen just hangs out on top of Burke's nose all night long. But that is to be expected I guess. Now that he is more mobile and rolls around more to fall asleep, he gets pretty tangled in the tubing. I feel so bad but, he is a trooper. He doesn't complain too much about it. And recently he has figured out the way to get mom back in to check on him if he isn't wanting to fall asleep. First, he throws off his blanket. How dare he. Because we all know, including him, he can't possibly fall asleep without his blanket. Next he pulls his oxygen tubes though his crib and finds the connection part. And he starts pulling. And yes he now successfully unhooks himself from the oxygen. How really dare him. And when I come in to check on him he just looks at me with the unhooked oxygen in one hand, mumbles something, then looks at the tube, then back to me.

One more thing about night time, is his pajamas. Now that the weather is getting colder I feel the need to dress him in his warm jammies with the footies. But wait, I can't. He doesn't get tangled as much if we put the tubing down his back under his shirt or onesie. But there is no outlet for the oxygen if he is all zipped up in the footed jammies. Problem. Something the normal person would never think of when putting their child in the nice, warm and oh so comfy footed jammies. I figured it out one day. I decided to put his onesie on top of his footed jammies instead of underneath. Then I could have an outlet for the oxygen so he wouldn't get tangled in the night time and potentially suffocate . It is pretty ingenious, I'd say. Okay, nerdy, but very practical, and that is what I am going for these days, practicality.

These were just taken tonight to document his "practical" sleepwear. It is more tacky when the jammies and the onesie clash better than these above. But you get the idea.

Bath time. Yes, he has to keep it on during bath time too! We flip in over him every time he turns. He now starts to move it out of his way when he sees the chance. What else. Oh, traveling with oxygen. Yeah, that is fun. Taking "the tank" anywhere is a pain. The first time I took him to the store with the oxygen I put his whole tank and the cart in the grocery cart. I had Emma that day too. And I went to Wal Mart. What in the world was I thinking. The tank and the tank's cart plus Emma took up the whole grocery cart. And I actually thought I could conquer Wal Mart? We did it and it was a total pain because all the while I am dealing with back pain because of a back injury that happened in February of this year. Now, I have learned. I take the oxygen out of it's cart and I just put it directly in the bottom of the grocery cart. I shorten his cord so it doesn't get pinched and I am ready to shop! Problem solved.

This oxygen doesn't stop me from getting out. We go on walks, bike rides, and four wheeler rides. We just strap it on the back of the ATV and we are off exploring the ranch like it was nothing! We also go to the park and we love it. Burke does really well and sometimes I just have to detach him from the cord so he can go up the stairs and then down the slide. I am so glad that it doesn't stop him from being so curious and determined.Here is The Tank, Burke with his cousin Michael.

Burke riding Hawkeye. See the cord, it's everywhere!

Since Burke has recently learned to walk, my job has gotten a little trickier. I now have to be faster at giving him slack and moving the oxygen tank closer to him so he can go where he wants to. There is never a dull moment especially when he likes to go around our island in our kitchen so much. I have to flip it back and forth over the island while trying to cook dinner. Craziness is what I call it. Then another thing you don't think of with a normal child is that Burke can't get close the fire. So, I have to keep him away from our gas stove and oven as much as possible. That is hard because he wants to be next to me while I am cooking. Needless to say a lot of the times while I am cooking he is eating in the high chair. It works pretty well.

I think I have covered most of the aspects of our lives that are changed from dealing with Burke's oxygen. Honestly, it is harder than I would have ever thought. It tests my patience and I have many times cried over the dumb cord because it seems to get caught on everything. I can't just walk out the back door very quickly because if I do, the cord gets caught on the door nob and pulls us both back. I guess I hate those moments because I end up hurting Burke and I get mad at the oxygen because of my bad judgment or move. It doesn't hurt him very bad at all it mostly scares him when we get yanked back. I am definitely learning patience. There is a reason we are given this trial to deal with. Heavenly Father knows what he is doing and he is teaching us so many things, of which I will forever be grateful for. But at the end of the day what I am most excited about, is that hopefully in a couple of months or so, after he has his surgery, that he can be free from this oxygen once and for all. That he can just run and play like any other 14 month old. That he can just be free. That he doesn't have to sit in the stroller because sometimes it is too hard for mom to deal with him if he gets let out. I want him to be let out, never to return again to the confining stroller. He is so determined to conquer anything that is throw at him, that I know he will over come this and be let free one day. He is a fighter and he will recover from this surgery like it was just a bump in the road. And then he will be everywhere. And when he is everywhere I want everyone to remind me, if I complain about having to chase him everywhere, that I wanted him to be free. That I don't ever want this hindrance on my child or anyone elses' child either. The oxygen is necessary and I am grateful that he has it, because it is buying him time to get bigger for the next surgery. But, it is truly one of the hardest things I have had to deal with in my life, on top of everything else that is going on in our lives right now. We have a child who has congenital heart disease. We have to deal with that all the time. The stress never leaves. And that is okay. We would never trade him for anything. He was meant to come to our little family and we are so grateful he did. We are looking forward to the day where he is able to do the things physically, that he otherwise can't do, right now. We are looking forward with faith in The Lord that things will work out for Burke and the surgery he will need and hopefully receive in November. We should know the surgery date soon and let you know when that will be. This post is long. I am not sorry, because this is what needed to be said about my life, right now, today. The end. But not for the oxygen, not yet at least. Not yet.