It’s been a few days since I’ve updated so I’ll try to just hit the highlights…
Post-Op Day 6 and 7
The past couple of days have been really good days for Jack! He’s been getting up moving around and walking more than ever. We’ve been to the play room about 50 times. He loves the big window and the block table and the fact that they’re all the way at the other end of the hall from us just means he has farther to walk and that’s good!
They ran some tests on day 6 to check for chylothorax and he was negative. Yay! They also did an ultrasound of Jack’s throat area to check for blood clots and he didn’t have any. Another yay! The drainage has just been really persistent and and negative test results mean that the new blood flow is just causing Jack’s body to have a harder time adjusting than most other kids do. Now we just wait for it to slow down.
On day 7 Jack got one tube out! Yay! The left side has been draining a lot less than the right side. The nurse practitioner came by yesterday morning and he told us that the plan is to take the one tube out and keep watching the other one. They’ve bumped him up on the diuretics to try to get rid of some of the fluid. He said that Dr. Dabal created a pathway between the two areas where the fluid sits so that if the fluid on the left does build back up it should be able to seep over to the right side and drain out of the remaining tube. Then once the right side dries up for the most part, they’ll pull that tube. We’ll continue on the diuretics for a while to make sure it doesn’t build back up. We’ll stay in the hospital for 2-3 days after the tube comes out to make sure it doesn’t build back up quickly. Once we go home they’ll monitor us on a weekly basis with chest x-rays and echoes to check for fluid. The hope is that it doesn’t come back. However, its likely that it will. He said that they like to get the kids home and to their own environment where they can move around more freely and eat better because those things will help with the fluid. But if Jack starts showing signs of being tired, breathing trouble, or eating trouble we need to bring him back immediately. He said to always pack a bag for the first couple of months when we come because the likelihood that we will have to stay is high every time. He said if we do end up getting re-admitted they usually will start with diuretics by IV to try to clear it back up and if that doesn’t work there is always a possibility of having to get a tube back in to drain it. However, there is definitely a good possibility that we will go home and not have to be re-admitted so we’re believing and praying for that. And if we do have to be re-admitted then we’ll cross that bridge when we get there!
We’ve moved to giving all meds by mouth which is not fun. Its usually 3-4 different things every 4 hours with a couple here and there in between. He screams and spits and cries. Not fun.
Having the second tube out is making a huge difference for him. He is happier and way more mobile. He takes off without us and we have to catch up before he pulls the last tube out! But happy and wild is good. Happy and wild is JACK!
Post-Op Day 8
I can’t believe its already been over a week! We waited and dreaded this surgery for FOUR YEARS and now here we are. Eight days post-op. Feels amazing to know its behind us for good! And if we hadn’t had to reschedule we would only be post-op day ONE right now so thank goodness for surprise schedule changes! We are about to head down to the arts and crafts party downstairs that Jack has been looking forward to all day! Our fingers are crossed that the third and final tube will come out in the next 2-3 days. That means home in less than a week!
Here's Jack showing you how he's only got one tube left! :)
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