Friday, June 3, 2011

Getting ready

I know that it has been a while since I have updated you all so I do apologize. I am happy to say that Xander has been home as of today for 3 weeks. This is the longest amount of time we have had him home since he was born,it has been so nice as well. We have only been up to primary's once and that was only due to his NJ Tube coming out and needing to be placed back in, it was definitely a different feeling going in with him and actually leaving with him that same night..

Xander is now 4 months old as of the 2nd, its a sad period knowing that he is getting older but its also an anxious period as well. With Xander being 4 months now just means that the 2nd surgery is coming but it may be coming sooner that we anticipated.

Xander is back on his oxygen full time. We started at .12 and we are now at .25 oxygen help, He has started to become irritable and at times forgets to breathe which then throws him into a panic let alone mom. His hands are paler and finger nails are a bit bluer. These are all of our signs that we are told to watch for as he grows so that we can advise doctors of the changes. He also has lost weight. He had been gaining pretty well but just this last week he has started to decline, as of today he weighed in at 9 pounds 11 oz. He had been 10 pounds.

I advised his cardi doc of all of the new changes that we are noticing and instead of having our cardi appointment on June 15th he has moved us up to this Monday June 6th.  We were advised that he is going in the CHF (congestional heart failure) phase and that if we need to move oxygen up past the .25 we are to come in.

I have tried my hardest to prepare myself for all of this and for his next heart surgery but to actually see that it is right here soon scares the crud out of me. I know that Xander will forever beat what is thrown his way and will forever teach our family about being strong.  I will update on Monday when all is said and done.

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