This Fontan surgery has certainly proved to be every bit as difficult as Jonah's medical team has explained to us-over and over and over. With that, Rob and have broken it down in to several parts and we feel like we just stepped in to only round 4 of the boxing ring.
1. The emotional toll & anxiety the preparation for this surgery took. 2. Surgery itself. 3. The first 36 hours immediately post-op. 4. Striking the balance of the fluid restriction and diuresis, eating, and replacing his essential vitamins & minerals.
As we've moved into this next phase, we really feel the exhaustion setting in as we realize how long this healing process is going to take. Last night and today Jonah has become very wise to the trickery that has been played on him when it comes to his oral medications. Overnight alone they added at least 4-5 new medications-all having to do with diuresis and the catch up that must be done as a result. Added to that is Jonah's need for a good old fashioned poop:) He's had a boatload of medication causing things to get blocked up and he's not super interested in eating/drinking. The new circulation also causes congestion in his liver and arteries feeding the intestines, so again, a reason his nutritional drive is in the toilet.
We are attempting to control Jonah's discomfort with Tylenol today-yup, nothing fancy- and wake him up a bit. Crazy thing is, he's doesn't seem to be in a ton of pain at all!
We did achieve some success today with the disgusting 'salt lick' that is his sodium replacement. Also, his potassium almost went dangerously low so we laced that with a little grape juice and he actually took it ok. I think that will try to be our routine for his new (temporary) oral meds...for now, of course. I'm sure he'll spit it back in our faces soon enough;)
We did have A LOT of good that happened today!!!! Here is our Highlight Reel ...
(The minute-to-minute woman in Jonah's corner that's made such an impact on us this admission is in the first pic: Dr. Melissa Nater)