Day 2
Posted on January 5, 2012 by Sarah
Holy cow is it different being here for the second operation. Evan is progressing quickly and is far ahead of where he was recovery-wise at this stage months ago. Early this morning he was extubated and off of the ventilator! So 18ish hours after handing our precious baby boy off for his second open heart surgery he is breathing on his own. I know previously it took several days before that was possible. He is still using a
cannula and is getting O2 through it. He hates it and clearly wants it gone. I can’t blame him at all. His O2 sats are pretty low still and don’t look to have improved at all after the surgery (its in the 65-70 range). We were told that it is due to his new circulation and that once his body calms down and does better with redistributing blood and pressures his sats should improve to where they were. That will be fantastic.
We didn’t get to hold him today which was a major bummer. I don’t know if that is because they don’t have a rocking chair (the nurse tried to find one earlier but failed) or due to him being pretty sore still. I want cuddles for sure but I also don’t want to disturb him either. He reacts a lot to our voices and when he opens his eyes and sees us that also sets him off. I hate stressing him out so I try to lay back. Behavior like this makes me wonder just how tough the Fontan will be when he is 2 or 3 and knows a heck of a lot about what is going on around him…
He is still pretty uncomfortable and they are giving him healthy doses of pain meds. I think they tried to wean him down too aggressively and he got pretty pissy so they just gave him some morphine and Tylenol and he went back to sleep. No mater how many times we tell them that every time he goes under he seems to need more and more pain meds for longer periods, they are always aggressive and end up having to give him extra doses. I wish they would just heed the warning a bit better. We’ve also learned that Evan has a paradoxical reaction to
Versed and have told the staff many times and that message wasn’t getting passed along until someone finally wrote it down this morning and stopped giving it to him. (Versed is a sedative and is supposed to calm you down but it gives Evan energy and he laughs in its face).
He is peeing a lot so removing those fluids is helping to reduce the swelling. He is looking more and more like himself. His chest tube drainage is also slowing down. During morning rounds Bill heard that during the procedure there was a suspicion that they may have nicked a coronary artery (or was it carotid? Dad will have to clarify) and that this may have been some of the extra bleeding that happened in the OR yesterday and that they had to wait for.
They wanted to start Evan back up on feeds and while talking we explained his history and how much he is throwing up. GI came and talked to us and they are starting him off very slowly. We told them about the upper GIs and milk scans and swallow study at Bronson and UofM Dr. was all – wow that’s a lot of testing. Funny because that’s what we think UofM’s approach is sometimes – no test is too excessive to perform. Anyway Dr. said it would take days to weeks to get the info from Bronson (?) which baffles me because I thought this stuff was electronic so it wouldn’t be that hard to share and I also thought the 2 hospitals were communicating better with Evan’s health but I guess not. Just like the neurologist didn’t know we had a EEG at Bronson, the GI people were clueless as well. Awesome. In any case they are giving him 10ml/hr and have a plan to pump it up. When they started with the first feed Evan did gag a little but that was it. I am trying to cut down to make only 1 oz per hour instead of 1.5-2. So this means I go from 1350-1440 ml/day to 720. He eats 1080 a day so this will put me in the negative for the first time ever (!!) but we are using frozen milk from September people so this is getting ridiculous and mama needs a break.
During rounds I heard they want him to have another upper GI here (maybe b/c they can’t get the records from Bronson in time??) but they are delaying that until he is off of some meds that can interfere with testing. They want to take him off of his Zantac… er now Nizatidine because it is a H2 blocker and proton-pump inhibitors are much more effective. Uh… yeah I think we were arguing about this too so I’m happy this will be changed. They would also like to see him off of Reglan because one of the potential side effects is ticks, especially if used longer than 3 months (uh yeah that would be us). Again, don’t know why we weren’t told about this before or asked about it recently. I also don’t know why a GI person hasn’t talked to us at Bronson, just a peds surgeon. Sigh. That’s why we are taking advantage of getting a second opinion while we can.
Evy continues to be a heartbreaker in the PCTU. We are seeing some familiar faces and they like to come and check out how he has grown. Daddy printed off some cute pictures and we have them hanging on his bed. Ladies ooooh and awwww over him, naturally. He’s pretty much a stud. They are looking to move him to the floor tomorrow. I don’t know if that means moderate care or the general floor as they are much more mingled now and are both on “the floor.” Doesn’t matter – it just means we will get our own room and will be one step closer to leaving. I still see us staying through the weekend so maybe we’ll head home early next week!
