Post-Fontan Day 12
Now that the chest tube is out we are basically waiting a few days to make sure the fluid doesn't re-accumulate and then we can go home! We are also working on getting all of his meds switched over to what he will go home on. They left the IV lasix on today to give him one more day of that. Tomorrow they will switch that to the oral lasix. Hopefully the fluid stays away! We also need hematology to let us know if he will go home on the Lovenox or Coumadin. He had to get his Lovenox blood-work done this afternoon to check his levels. They came back a little high so they are lowering his dose a bit. Not sure why they came back high, usually after they are at a therapeutic dose they stay that way. I hope it evens out or it could keep us here longer. They have to make sure the level is stable before sending us home.If they switch us to coumadin it may not make a difference. He is also on aldactone as a second diuretic, zantac and sodium. I am hoping once he comes of the IV lasix they can stop the sodium. I am pretty sure that he is on the zantac for the throwing up. Today he only threw up once so I am hoping that is getting better and we won't have to deal with that much longer.
They took his temperature earlier today and it was a little high (99.5). I was a little concerned because the site of his original chest tube had looked pretty yucky. He took a nap and woke up pretty fussy. We checked his temperature again and it was back down. The attending decided to go ahead and put him on antibiotics as a precaution . Better safe that sorry, we don't want to get home and it be infected. He may finish the antibiotics while here, if not he can go home on it.
Jacob got to go to Art Therapy today and make a really cool painting. He drew all over the paper with white crayon then painted over it with watercolor. It was a fun activity to break up the day and I got a nice keepsake!
Later this evening Jake wanted to go to the playroom. We got there and he found a toy shopping cart they had in there. He went out into the halls and took it around the step down unit. I figured after about one lap he would get tired and be done. Boy was I wrong. He wanted to keep on going so we walked over to the Cardiac Intensive Care Unit (CICU). Our room is at the end of the CICU hallway, we are in the overflow area. Jake walked all around the unit, he did at least 10 laps if not more.
The nurses, doctors and even the other parents got such a kick out of seeing him walking around pushing the cart. Some called out "Clean up, Isle 5". Another nurse would run to the supply closet every time we came around and fill his cart up with goodies. Thanks to Jake we have a new bottle of hand sanitizer, sippy cup and tissues. He would grab the items and throw them in the cart.
We joked that we were on the hunt for some better food because we were sick of hospital food. One of his nurses from a few days ago raced him up and down the hall. They love seeing kids looks so good because they are used to seeing the kids when they are really sick and stuck in bed. I finally had to MAKE him come back to the room so his nurse could do his 8pm vitals and meds.
When we got back we saw his heart rate was yet again in the 150s while up and running around. This must be his baseline. He tends to have a higher heart rate even when resting. It isn't super high, just his baseline. I notice at home when he is super active he tends to breathe a little heavier. He was acting exactly like he does at home and is playing. His heart rate probably has always done this when he is up and playing I just don't have him hooked up to machines at home.
Jake has been eating like a champ all day. So many kids don't want to eat after this surgery so it is such a blessing that he is back to normal. He drinks and eats all day. Like I mentioned earlier he only threw up once today and that was when he was super upset from being messed with. So hopefully that issue is almost over.
So all we have left to do is wait and play. Please continue to pray that the fluid stays away. Hopefully in a few days we will be on our way home! Fingers crossed!!!