Today is Wednesday and we are over the 48 hour mark post surgery. I must say the time after surgery is moving much quicker than the time in anticipation of surgery. There was no update yesterday because it was a tough day but overall still moving in the right direction. As soon as Jasiu woke up he didn't want anything but his milk, juice or water. Our center restricts fluid intake post Fontan for at least 36-48 hours. The first 24 hours were decent he asked for it a few times but was satisfied with the pacifier dipped in water and he was still so out of it that it was bearable. The next 12 hours he was pitiful. It was the saddest thing that we could not fulfil the one need that he had. He was thrashing his legs, screaming and almost rolling over to break out of this joint and get something to drink that we had to go up on his pain med and added versed (happy drug) for a bit. In the meantime, his arterial line coming out of his groin that was we were relying on blood pressure and blood gases seemed to provide "goofy" numbers because clinically he looked great and all other numbers were just fine. So the nurse investigated and turns out that the tip of the line was twisted somehow and after numerous attempts to fix it, the team decided to pull it out. It was great that we were pulling lines out already, however it was too soon post surgery and this type of line to be put in is a surgical procedure in itself, so this was bad, but there was no other option for this particular line and we had to wait it out an see what was going to happen without it. Thankfully, nothing happened and the blood pressure reading is continuously coming from a BP cuff on Jasiu's leg, a little more annoying to him, but still OK and gasses have to be drawn from the Venus line, so it's a different metric that they have to compare it too but they are still good. Because of this ordeal, Jasiu got a hefty dose of the versed (happy drug) so that he wouldn't hurt while the tired to fix it, he was sleepy for a better part of the afternoon on Tuesday.
After he woke up, he was madder than ever and his thirst peaked at that point. So we kept asking if he can have some clear liquids at least to calm him down. They finally budged (only because it was last resort and he was doing well thus far) at around 8 pm and he got 2 oz of pedialite. Little did we know that this limited amount was just going to make our sweet boy just MADDER ! His stomach tolerated that and half hour later he got 3 oz of apple juice which did not satisfy him either. It was calculated that because of the IV fluids that he got during the day he was only allowed 8 more ounces for the next 12 hours, so we split that into two bottles of milk 4 oz each. It didn't completely quench that monster thirst but it helped and he got a fairly good rest during the night, which means mom and dad got a few hours o shut eye as well. Me in the waiting room, Joe in Jasiu's room (only one parent allowed to "sleep" in the room)
Starting at 7am today his full day allowance is 31 oz = 930 mls of fluid. Based on Jasiu's weight this is apparently 80 percent of his daily requirement. It seems like a lot but because of the Lasix, diuretic medicine to make him urinate and help with the fluid retention, it's still not that much. The happiest he has been post op was when he was finally offered a full bottle at 7am. The tricky part is to space out the liquid so that he doesn't get all of it during the day because than he can run out during the night. It's a very delicate balance.
Other than drinking issues his mood is a little better but still has no interest to play much. He did hold a marker and tried to color but was just too tired to hold it for too long. He is a little bit happier because the folly catheter came out so now he can pee in the diaper. Additionally, his Fentanyl and Versed (continuous medicines for sedation and pain) were removed as well. Jasiu is taking one oral pain medicine, Loratab (sp?) and one IV pain med, Toridol (sp?) Coming off of continuous pain med to oral medicine that wears off was a difficult transition and did not make for a happy baby on Wednesday morning. He also took his multivitamin by mouth and chewable aspirin. As far as food goes, he ate 3 Gerber puffs, about a spoonful of applesauce and 3 spoons dipped in mashed potatoes and gravy, one spoon of pudding and some fruit puree. Nurses are calling this a successful eating day at this stage in recovery. We were informed that the "drinkable" yogurt is not part of the restricted fluid and he downed two of those for a total of 6.2 ounces. Such a trooper our guy is. We are so proud.
I also got to hold him for a little bit today. They actually want him to move around to loosen up any fluid that could be building up. It seems awfully uncomfortable to move with the two chest tubes. Once Jasiu figured out that being on my lap is not going to get him to break out of here he kept pointing at the crib to be placed in, so we did. He doesn't seem to be in too much pain on the bed but I feel like he's getting restless leg syndrome with all the leg twitching he is doing. Once he gets comfortable he's out like a light.
The plan for tomorrow is to continue to work on maintaining the right amount of fluid intake, work on eating more solids and to loosen up as much fluid around lugs to see if the tubes are draining less and less and to see if they can come out. My prediction is that at the rate he is going, he may lose them by Friday, but only time will tell and Jasiu (and all these babies) make their own rules, no set "standard". I say, as long as they are progressing in the recovery, that is all that matters.
Late update on this evening, Jasiu is having pee pee issues. His folly came out today and he only had one wet diaper which actually I witnessed getting wet and it was visibly painful for him. He did not want to urinate. 6 hours later and two doses of diuretics and still no wet diaper, so they did a bladder scan and found over 200 ml's (that's over 6 ounces) of urine that he was holding in. Apparently it hurts him to pee and he's afraid to do it. I was about to post the update and Joe calls me from the waiting room where I was going to post and then take a few hour nap while he was holding vigil. He called me just in time because the nurse was about to stick another folly in to get the urine out. I went into full force to try to avoid a step back in the wrong direction and give Jasiu a chance to do it on his own. He was due for his pain med so we gave him that and since the plan was to put a cath in, they gave a dose of Versed. I suggested as a last resort to give him 20 minutes to see if he is sleepy and and the meds kick in maybe he will relax the bladder and pee on his own and it worked ! He peed and peed and through the diaper it went. The scale said it was about 130 mls and the rest was on the sheets so we had to change them bu they were satisfied and held back on the folly. So let's pray that he pees through the night and his little pee pee heals quickly since it's fairly tender as I was wiping him with a wet wipe.
We continue to pray for a smooth recovery. God is good and he knows what he is doing, we may not always understand the purpose, but we must take it in with stride. We also thank everyone who is supporting us in continued prayers.