Sunday, April 19, 2009

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Hunter is still doing well during the day with no oxygen. Night (sleep time) has been difficult and he has definetly needed it.

Last night, I went into his bedroom to check on him. He was in a deep sleep and his oxygen was sitting at 97%. Although, 97% is a good number and would not warrant anything wrong, it didn't sit easy with me. 1. I knew Hunter was on oxygen, 2. When Hunter is on oxygen at night, he never leaves 100%. I walked up to his crib to see what was going on with little man. I found his nasal cannula out of his nose, oxygenating his eyeballs. This, however, will not help his lungs. Then, I realized..."OH MY GOSH, HUNTER IS SLEEPING WITH NO OXYGEN". So, I turned off the oxygen and put Hunter through another test trial of sleeping without oxygen. This has been so hard for him. Two hours came and went, Hunter remained at 96-97% oxygen saturation. Could this be? Could it be the time to take the oxygen away? Well I'm not convinced yet. I put the cannula back in Hunter's nose because I was falling asleep. I didn't want to leave him without oxygen without being closely monitored. Although, the monitor would sound off with this loud piercing noise if something was wrong, not only would I be awake - our neighbors down the street would also know that something was wrong. I didn't want to rely on a machine to let me know if my baby was okay.

See, when I'm testing Hunter - I can't just rely on a machine, I'm in his room checking on his color. Blue is not a good color for him, but - unfortunately, a color I have seen way to much. I also check his respiratory rate to make sure that he isn't working too hard to breathe on his own. I am also monitoring his heart rate. A higher than normal heart rate would mean that it is too much work for him to be off oxygen. A lot, goes into monitoring him. Last night he was doing great. His heart rate was staying low, his respiratory rate was normal. Although, I was in tears and overly excited that he is sleeping, with no oxygen, it will take more time to really say for sure if he has overcome the last leg of the oxygen journey. If not now, it won't be long. That itself, is so exciting. For the next couple days during nap, and nights at bedtime, I will leave the oxygen off. Pray for Hunter! We know he can do it!

I think about where we were a year ago. If somebody told me that I would be taking away his oxygen - I would never have believed him.

Although, I should be happy and I am...A part of me is scared. Taking away my baby's oxygen is nerve racking and stressful. How do I take away something that has helped my baby breathe his entire life? So, I am overly cautious and want to do it when the timing is right. I don't want to rush it. I want to be completely confident that when I take away his oxygen for good, its because he can do it. He can breathe without it. The doctors told me that one day he won't need it. I prayed for this day over and over again. But, I didn't know how scary it would be. So, cautious and safe is the word for now...okay, maybe a little paranoid...but, I saw that Blue is an ugly color. I never want to see that again. I, also, know that his very serious heart condition can come back if he doesn't maintain his oxygen saturation. Call me crazy...but, I'm not looking for another PICU stay. He's my world!