So close, yet so far away

On Tues we were given the option to go home Tues night or Wed. We chose to play it safe and wait until Wed, and boy did this turn out to be a good decision. The docs had noticed a slight sliver of fluid around his right lung but at the time they were not concerned. However Wed's X-ray showed the fluid had dramatically increased, and therefore the dream of going home was crushed. But on the bright side, if we had not chosen to wait until Wed, we would have gone home without the morning X-ray and would have been oblivious to the growing fluid around his lungs. By the time we would have caught it (at next week's follow-up), it would have been a bad situation; he would have been re-admitted and had the chest tube put back in.

So yesterday they loaded up the diuretics once again in hope of drying up the fluid around Jonah's right lung. If that didn't work, they warned us that they would have to put a chest tube back in. Luckily the diuretics worked! The X-ray this morning showed good progress. Although there was still some fluid, we are hopeful that more of the same diuretics today will do the trick. The cardiologist won't commit to a discharge date yet, but hopefully it will be tomorrow or Saturday. It all depends on how his X-ray and blood work checks out.

The docs also have recommended that Jonah stay on 1 liter of oxygen 24/7 when we go home. At least for the first week and it can be reevaluated at the follow up appointments. It will be challenging to say the least to have a 2 year old hooked up to a big oxygen tank, but we are willing to do anything to help in Jonah's recovery. We are quickly realizing how long and treacherous the Fontan recovery can be. It will take months for Jonah's body to adjust to the insane re-plumbing of his heart. So if a week or so of oxygen will help, so be it.

As for Jonah himself, he is being a very good and patient little boy. He is playing well, and we are doing our best to keep him occupied and entertained. The last 2 days we have been getting out of the room and walking down the hallway to the play room. Today he took a wagon ride down to the main lobby to look at the fish tank, took a short stroll outside and stopped up on the 3rd floor to say hi to all his friends that took care of him on the PSHU.

Hopefully we can keep his spirits high, along with our own, so we can get out of here in the next day or so without too many more challenges.

Please pray for a good X-ray and blood work in the morning!!