Monday, May 16, 2011

Home once more

Well our little Xander has made it home once more from PCMC. Xander came home on Friday 5/13/2011. Usually you seem to have bad days on Friday the 13th's but i definitely have to say that this one was a very blissful day!

Now that we have cleared the hurtle of the NEC ( necrotizing enterocolitis) we still need to watch for it as it can come back very easily since he has now had problems with it, but i caught it at the beginning of it the 1st time and i will catch it again.

Xander turned 3 months on 5/2/2011 and once more we celebrated it in PCMC but what better place to celebrate life than up there right. Mothers day came and my only wish was to have all of my kids together in the same room that day so off we went to spend it up in Xanders room, its a day i will never forget and will always hold dear to my heart.

Life is starting to get back to normal now that we have Xander home.

The only new news i have on Xander is when he came home he was sent home to be on his oxygen 24/7 again, with only having it fully gone for 3 weeks. Xander is having some trouble keeping his stats in the 75-85 area and his lasix has now gone up which both of these are starter signs that the 2nd heart surgery is just around the corner.  He is starting to sweat a bit more but color is still good and we have not had to up his air rate of .12 any higher.

We have his first actual Cardi appointment on June 15th and from there we will discuss when to do his surgery, but my gut instinct tells me we will be doing it late June early July area, but until them we will enjoy the days home with him and get him all strong and ready for that day!

Tuesday, May 3, 2011

Getting closer to coming home again..

It will be 2 weeks this Saturday that Xander has been back in the hospital after only getting out on the 16th of April and was home for a week, But i am happy to report that his NEC has subsided and we are doing great. As of Monday they took him to have a swallow test done and unfortunately he failed on the thin but passed on his thickness, so they replaced his NJ tube after 10 days of not being able to have food while his intestines rested.

Now for today our little Xander decided he was going to be a naughty little man and pull that NJ tube right out, so that the speech therapist could not come in and make him eat from a bottle with thick nectar to see if we would be able to just go to a NG tube instead, but nope Xander wanted it his way...

I am so happy that we caught his NEC early and are not going to have to do the surgery. I am ready again to have him home but this time i would like him to stay home since on Monday 5/2/2011 he turned 3 months and that only gives us up to 3 months at the longest before his next heart surgery and I want to be able to hold and play with him as much as i can before all of that.

But for now i will let him enjoy the spoiling he is getting up there by all the nurses just as long as he agrees that once he gets home he's home for a bit lol