Thursday, December 6, 2012

Following up with Jack

I was reading another blog today from another heart mom and started to feel guilty that I have not posted in such a long time. I do post a lot on Facebook on how jack is doing but I have been asked a lot from people how Jack is doing by people who are not on Facebook. I have even been asked if something really bad has happened to Jack and thats why there are no more blog posts. After that question,  I decided maybe I should get back on the blog to let you all know how great Jack is doing these days.
Since Jacks last surgery in March, he has had quite the battle with fluid in his lungs. Jack ended up back in the hospital shortly after being discharged for the dreaded Chylos Fluid that he had battled after his second surgery. We kind of expected that Jack would get this fluid again because he had it before, but this time was pretty bad. He was admitted early April with fluid in his lungs in the amount of 750mls. That is about 25 ounces of fluid (imagine of 3 cans of soda just sitting in his lungs). Basically he was drowning. They had to put a small tube into his chest to drain the fluid and he had to remain on watch for about 2 weeks at the hospital. It was a pretty scary moment going back into Childrens with a child fighting for air and turning blue right in front of my eyes. Thank goodness it was caught in time. Since then, Jack was put on a low fat diet,  lasix (meds to keep fluid down), and we had to go for a weekly xray to keep an eye on any fluid. This went on all summer and into fall. Then because the fluid just wasn't getting better he had to go in for another heart catherization... that would be his 9th one. In the cath, they were able to coil off unneccesary veins that could be causing high pressures in his lungs, that would also be causing some of his fluid issue. It was a rough cath for Jack, probably the worst recovery after a cath I have seen him go through. But with in a week he was back to hiself.  Just recently Jack was able to come off the meds and we have had a 3 week wait period to get another xray, which is tomorrow. We are hoping for a nice clear xray since being off the medication. It would also be so nice to nix the xrays all together. It is not an easy trip for Jack. Basically this kid has had enough. My only bribe in  the hospital is the big fun animal shaped cookies they sell in the lobby that he isn't even supposed to have because of his diet! But it is pretty sad when your 2 year old knows when you are on the road leading into the hospital too... starts crying at that point until we hit the cookies!
Jack seems to be doing good now! He has a lot of energy and a lot of spunk which is really nice to see. I enrolled him in a Pre-pre K class that he absolutely loves. It is a great experience for him to interact with other kids and just play like a normal little boy. Recently we had our big interview with Millbury public schools to set up an evaluation to see if we can start Jack in real Pre-K this spring. It all will depend on if he is delayed or not. If so, they will take him right when he turns three in the spring. If he is not delayed we will have to wait till fall. I have to say though, Jack is no where near delayed. Although school for him in the sprind sounds soooooo good to this mamma, I am proud of his achievements and if he has to wait until fall that is really a good thing. We were told in the beginning that for every day Jack is in the hospital would lead to one week of being delayed (he has been admitted total of 8 months of his life).NOPE- Not my Jack. Jack can count to 20, count objects, knows his alphabet, knows all his shapes and colors, and talks very well... heck, he reads license plates in the parking lots. He can use the ipad better than me! Sorry if I am bragging, but it truly is becausee I am just plain ole PROUD of who he has become with all that he has been through.
Jack is going to be a big brother in February. Not really sure how this will all turn out but he seems to be ok with it now. Most of the time when I ask him what is in my belly, he refers to it as a baby... sometimes its an animal of some sort, like a horse! One day Thomas the train was in my belly. It is really amusing to hear what he comes up with. This kid has character and we love it. So hard to get mad at him with his big blue eyes and a smitten grin. He still has this mamma wrapped around that little finger but I love it! So I will keep you posted on results for tomorrows xray and try to be a lot better about getting on this blog! To those of you keeping up with Jack, I really appreciate it!!