Thursday, September 10, 2009

A fall fashion statement

I received the dreaded call yesterday morning with news that our home health nurse was bringing our oxygen supplies by early afternoon. It was about this time that I realized that a mother who has problems with a nervous stomach does not mix too well with a child who has these issues. Thinking about everything was so daunting and exhausting and down right scary. By the time our nurse drove in the driveway, my colon was completely empty and my heart hurt from anxiety and heaviness.
Little did I know that once everything was set up, it wasn't that big of a deal. It's amazing how big we chalk some things up in life to be when we don't understand them fully. We have a good relationship with our home health nurses stemming back to the apnea monitor days we had when Nate was a wee wittle lad. They are familiar and comfortable with our family and are always so helpful on these sometimes daunting changes in our lives.
We have a concentrator for our house and about 50 feet of tubing. Nathan can run around the house like usual with periodic primal screams that reveal that his tubing has gotten stuck somewhere and the cannula is trying to drill another hole into his head. But for the most part, he gets around with ease. I saw him actually pulling the tubing behind him at times throughout the day to help it along or get it unstuck. He's a quick learner, the little dude. He cried when we put the cannula on him the first time...and well, the first day he cried anytime we had to adjust it or retape it or whatevertheheckelse. But he didn't try to take it off or mess with it at all. He just accepted it. We were obviously shocked at this, but we really shouldn't be because it was something I specifically prayed for...his acceptance of this new change. Today, it hasn't bothered him hardly at all. At one point, the tubing was stuck and pulled the nasal prongs into his mouth. He just walked up to me with a sheepish smile on his face because of his funny problem and let me fix it without even a whine. And by this afternoon, he was wearing the cannula without having to have it taped to his face. He just doesn't mess with it at all, and it stays put easily on him. His sisters have responded really well to this new equipment as well. They both tried wearing it for a couple of minutes and thought it was pretty cool. But they have both asked if he will have to wear it which I reply, "Well, I hope not." And really, we don't know. We don't know what to do from here, and that was one of my main hesitancies on starting it to begin with. The what ifs... But, we prayed for guidance and a clear answer, and I believe God showed us what we should be doing right now. Sure, it is a pain in the bodunkadunk to have all this equipment and somewhat sad and frustrating to get the looks and questions we get when we take him out, but I feel like God showed us a path to take, so I don't want to complain about this path.
I do know as a matter of fact that as of a little under 24 hours on O2, Nathan's breathing showed a dramatic change. The retractions have lessened to where we rarely see them, his breathing rate has slowed some, and his chronic belly breathing is mostly absent. For the first time in Nathan's life, he looks like a normal kid breathing. In fact, there are times where I have to look really closely to see if he is actually taking a breath...that has never happened, as we have always seen retractions in his ribs and a large ballooning of his belly with each and every breath he takes when he is awake. It is simply amazing to see him take breaths so effortlessly. We can not deny in the least that this is helping him, and I can't wait to inform his doctors of this change in him. So we don't know how long Nathan will be on oxygen, but we do know that it has been a fairly easy transition to this new way of life...and we also know that we will continue to pray for guidance and strength along this journey.


Texas Mom on September 10, 2009 at 10:44 PM said...

So glad he is taking to the oxygen and tubing.... makes you think..... maybe he realizes how much better he feels. So many times we underestimate our little tykes!

Melodie on September 11, 2009 at 1:00 AM said...

that's amazing how much better his breathing has become in such a short time. He looks adorable, btw. Truly a blessing that he is not fighting this!~he probably notices a difference too!

Janis @ SneakPeek on September 11, 2009 at 1:05 AM said...

I remember the days of 24/7 O2, it sucked! Luckily Austin was a wee one so it was only me tripping over things. Now he is only on O2 @ night & nap time...that has been such a relief. What 'til you try to travel...oh boy, fun times!!

All that aside, I am SO glad that you are seeing an improvement already it's amazing isn't it. ((HUGS))

Anonymous said...

What a wonderful little boy. How much is he on? I am glad it is helping. Hugs to all of you. Linda

Amber Schmidt on September 11, 2009 at 9:43 AM said...

I think these kids know. Like Kyleigh has never fooled with her g-tube and we rarely had a problem with the ostomy. I always said I think she KNEW that she needs those things.

I am glad that the oxygen has worked so quickly! At least you know that the right decision was made and that it is helping! So glad for that!

Sending many hugs and prayers.

Tara on September 11, 2009 at 10:29 AM said...

What an answer to prayers...that he is adjusting so well to the oxygen. And that is great, that you can already see such a change in him and with his breathing! The Lord is so Good! Love ya and praying for ya!

Jill on September 11, 2009 at 10:42 AM said...

Wow! Your report sounds as good as we could have hoped for as we prayed for Nathan's (and your) adjustments to O2.

Love each of you,

Heidi on September 12, 2009 at 7:18 PM said...

Amber, Im so glad to see everyone is adjusting so nicely, that boy amazes me! I think his age helps, Jack would fight it of course he fights anything in or around his face, including food! So comforting to know youre seeing very positive changes with his breathing. These pics are amazing as usual,truly showing he's feeling much better. What a wonderful update, lots of continued hugs and prayers for little Nate- Jack and I :)

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