Wednesday, April 3, 2013

We gone!

Greyson had a chest x-ray this morning which looked good. We saw all of his doctors and they all agreed he is ready to go home!  He is going home on his regular aspirin, lasix which he will be on for about a month or less. He will also be on enalopril for life.

I can't believe it has only been 7 days and we are going home. Little man is a rockstar!  He's my hero. He is so tough. Just a week ago today Dr Fiore had his hands inside Greysons chest and today we are driving home.

We go back in a week for a check up with his surgeon and then in a month for a cardiology check up. Eventually he will likely have to have a cath (within a year) to close his fenestration but for now we are done!  We will always have to see cardiology but 3 years ago when all of this started this was the surgery we had to get through. From here on out it is mainly just regular appointments and possibly minimally invasive procedures. I am so glad to be going home so we can just recover and catch up on some sleep.

Ill keep updating the blog as we do appointments and heal. Hopefully from the computer and not my phone.  I know these updates have been full of typos but my phone was all I was able to get to.

Day 6 post op

Greyson had an excellent day yesterday. They had been weaning his oxygen ovet night but he had been sleeping and it came out of his nose so he wasn't on much and it wasn't going directly into his nose. So there wasn't much point in it.

I had to take Addison down to her urology appointment at 10:15. Her reflux is healing enough that she no longer has to take medicine which is good considering she hasn't had it all week. With everything going on it had been forgotten but turned out to be a good thing. She also should not have to have the painful VCUG test any more!  Excellent news.

When we got back from her appointment cardiology was headed into greysons room. They decided he could come off the oxygen and the NG and central lines could be removed. Yeah!  We took the central line out and of course the tape was the worst part. He was such a good boy and just laid there asking for mommy. He was so happy to have that NG and oxygen out next. He has done fine without it.

The plan is to go home tomorrow. And we are all ready for that.

Monday, April 1, 2013

Big news op day 5.

So this afternoon they took Greysons drain tubes out!!!  Dr Fiore told us before the surgery that EVERY kid drains for 7 days. So at 4 days we were surprised by how little he was draining.
We, including Greyson, are so happy to have those out. It was a big event and extremely painful for him but only took about 15 mintues.  He ate a strawberry shake milk (aka milkshake) with sprinkles and almost a whole bag of goldfish crackers. He even sat up in bed and played for a while.  Later he wanted to walk around so we got dressed and stood up but walking wasn't quite on the table yet. We couldn't find a wagon to ride in and by the time our nurse (who he renamed Frank, yes she was a female) got back with it he was done. We were going to have his xray done but they weren't ready for him so we headed back to the room.  We got all settled and about 10 minutes later she came in and said xray was ready now.
Greyson was pretty lively today. He was trying to roll onto his stomach to get up but his chest muscles hurt too much right now. He's still learning that he needs help with that.

He thought he was pretty funny farting in his diaper today. By 4 days since a poop his farts were pretty nasty smelling, not that they arent usually. Apparently we all needed to share in his gas because he had grandma, sissy, and daddy come over so he could fan the top of his diaper open at them.  Gross kid. Day 4 of no poop is all we went. He woke up with nasty pants and should be feeling better now abominally. 

Our goal this afternoon was to get him taking his meds by mouth so that the NG tube could be removed. We are weaning the oxygen tonight and should be off it by morning. Hopefully those can both come off tomorrow along with his central line in his groin. He should be only.monitors by tomorrow evening as long as he keeps taking meds orally. I did tell him he would have to stay if he didn't take his meds and that I wasn't staying in the hospital. He decided he wanted to go home with us. I know kind of mean but hey it gets the job done and we arent taking an NG tube home with us.

Please forgive my posts. I haven't had a lot of time to get them done and im doing them on my damn phone that doesn't know what autocorrect is.