Monday, April 10, 2006


There was much discussion between the pulmonary and cardiology doctors but the decision has been "tentatively" made...Max can be free of his supplementary oxygen as long as keeps his saturations stable. YAY MAX!

The discussion was because of Max's pulmonary hypertension, which requires supplemental O2 even when sats are good. However, they are not sure if the pressure is in his heart is caused by a lot of the hypertension issue or because of an issue with his heart (arteries too small). So since we have to try this sooner or later, they decided to give Max a "GO" for the next month. Then we will have another echocardiogram and see if anything has changed. That should provide us many answers...hopefully.

So it's good news and bad news according to the doctors. GOOD NEWS: He can get off oxygen for now. BAD NEWS: If in fact the pressure is not due to the pulmonary hypertension, then he may require another procedure (dilation of the arteries most likely) on his heart.

And the GREAT NEWS is that he has managed to be off of oxygen during the day over the weekend and did really well! He still requires O2 at night, and boy does he get angry when you put that cannula back on him! Yikes! Watch out!

All of this is so incredibly exciting! I still bring the O2 tank around with me in case he does require it while we are out and about, but so far, no emergency hook ups! And I still keep him on the monitor 24/7 of course to ensure stable saturations.

Another good thing about all of this is the less oxygen the better for his tender nasal passages. The ENT was really pushing me to get him off the O2 because it really dries out the nose and then it bleeds and irritates the surgery site and we are trying to leave that alone so it doesn't want to close again. Keeping our fingers crossed on that issue...I can not believe it has stayed open for this many months!!! WOW!!!


These are the two big oxygen tanks in our living room. It will be soooo great to finally have this lovely "decoration" gone someday...sooner than later hopefully! I think we will be singing the good ol' victory song, "hey hey goodbye, na na na na na na na hey hey goodbye!" (or something like that!!!) :)
And here are the portable tanks...they have been a lifesaver. I remember in the beginning how intimidating it was to release the pressure off of one, start up a new one, I know exactly what to do and I simply get one ready, throw the backpack on and go!


Kerry said...

That's awesome news Amy!!! Go Max!!!!

Kirstin said...

Excellent news. High 5 Max for me!

Steph said...

Woo-hoo!!! How wonderful!

Keeping my fingers crossed that Mr. Max doesn't need another procedure on his heart...and that his nasal passages continue to do well.


Drew said...

Yeah!!!! Great news.