Monday, December 13, 2010

Happy 9 Months Jack!!

Jack is 9 months old! I really can't believe how time flies! He is getting so big and moving all around. I feel crawling coming on real soon! He talks all day and is starting to eat table foods! I look back at his pictures from day one and it is such a big difference from then to today!
Jack has finally been taken off his Lasix. Its sort of weird and scary at the same time, only because Jack has been on this med since his first surgery on 3/17/10. He was supposed to be off of it after his last surgery on 7/16/10 but with his complications needed to remain on the lasix. After his first day off the med, I was changing his diaper and noticed his right leg looked a little purple and was also swelling. So I called the oncall doctor who was on that evening. She seemed to think maybe he was holding a little fluid and to give him a dose of the lasix to see what would happen. Its weird though, talking to a doctor that does not know Jacks history. I did however give
him the lasix and the swelling went down just a bit. It did come back the following day, so since it was the weekend, I decided to give Childrens hospital a call. They did know jack much better. But They did not think the lasix was the cause but didnt really know why his leg would be swelling and turning purple. I took it upon myself to give Jack another dose of the lasix since it did help it a little bit. Then that monday I called his pedi cardiologist to explain what was going on, also we were lucky to have a nurse visit the same day and she called the doctor too because she didn't like what she was seeing.
His doctor had him come in right away for an ultrasound on his leg, just to see if there was something causing the leg to react this way. His doctor was pretty sure it wasn't because he came off the lasix. Well to our surprise, they found a blood clot in his leg. It was an acute clot and was old. It was most likely from his last catherization. The lasix was helping reduce the fluid build up in the leg so we never knew this clot was there. The doctor then called me and gave me two options: one, I give him two SHOTS a day for 2 months of Heparin (blood thinner) or he has another catherization but on his leg to balloon the clot. Neither sounded good to me but I left it up to the docs to figure what was best for Jack. He called Jacks boston docs and they all decided to hold off on anything to see if it just goes away. Too many blood thinners (he is already on one PLAVIX) could damage his intestines, and since this was an old clot, it may go away on its own. So we will be having weekly appts to check on his leg as well as the function of his heart to make sure Jack stays stable. My immediate fear was stroke!! You always hear blood clots lead to stroke, but that is only if it breaks off and moves to the brain. In his case it would move to the heart first, which is also pretty bad. If it clots the heart, it will take room away from his heart to pump. Honestly, I don't look at this as good either way. But if the doctors aren't overly concerned, then I feel I have to trust their judgement. And since it was a group decision, two heads are better than one, so I guess 4 or 5 must be a lot better. My anxiety is pretty high though, and I worry every day. As if I didn't enough before, right?
So we are just praying this goes away on its own and no special treatment is needed, as much as I would like to nip in the bud and get rid of it. I don't want to put Jack in any more risk than he is. I am hoping he will stay healthy through this holiday and have a nice long break from any unexpected hospital stays!
I will try to keep posting on his blood clot and health. If I dont get on here till after the holidays, then I would like to wish everyone a happy and healthy holiday season!