Matthew had another appointment with his Pulmonologist today and we were hoping that we might get some good news about his oxygen. Let me just catch you up a bit, at his last appointment the Dr said he would have taken him off, but he wanted a current echo and x-ray. So we got all of that taken care of and today he said he was ready to take him off his oxygen considering his echo and x-ray looked good. He was saturating at 99% today to boot. The Dr asked about his breathing (wanted to know if he always breaths heavy) Yes, he does always breath heavy. He works very hard to breathe, but is not uncomfortable. With that being said he has decided to leave his oxygen on him for the time being and gave no indication of a time to shoot for to come off of oxygen. The Dr said he needs to get bigger and stronger and so do his lungs. Once his lungs get stronger his breathing should slow down to a more normal range. He currently breathes at a rate of about 50 breaths per minute. Normal for an infant is between 30-40 bpm. This bummed me out a bit, as I was hopeful we would be oxygen free today. Oh well I guess I am glad that they are being cautious. I would rather be safe then have to try to catch up if he came off oxygen and had a set back. We are used to having it on him all the time so it will not any different then what we have been doing. This is just one of the many things that reminds you that the CDH beast is still lurking around the corners. The good news is that he doesn't want to see him for two months. His doctors visits are getting a little more spaced out, not a monthly thing. That has to mean he is doing things right. Matthew will not see any other doctors until September then he gets to see all of them that month. So we may remain quiet until then.
Cheers,
Jaime
1 comment:
I'm sorry you were disappointed today. I'm thinking the oxygen helps ease Matthew's struggle for breath; is that correct? He's becoming more & more active (thanks for sharing the videos) & that activity will make him stronger! I know time seems to go slowly sometimes when we have such big challenges in our lives, but you will be so surprised and proud one day to see your little ones all grown up & hopefully independently dependent on God. You & Jim will be rewarded for all the love, support, example, time & everything a good parent does, that you are pouring into those boys! Keep on keeping on; cling to the Lord like you have. Time flies whether you are having fun or not. It just does.
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