I think all three of us feel a little defeated/discouraged today. I know we are only 5 days out from surgery (I can't believe some kids are able to go home at this point). But I knew going into this that we would have some bumps in the road, like always Logan likes to do things his own way.
Logan had a great night. Our room is quiet. I slept pretty good until 5 am when I got up to help with x-ray and realized Logan still hadn't peed. 3 doses of diuretics and still no pee. Pretty crappy, I was nervous. He was miserable and couldn't get comfortable after he woke up. The doc came and checked him out.
Now at the end of the day this is where we stand...
His x-ray was unchanged today from yesterday, meaning all the draining from his chest tube was not draining the pocket of fluid in his lungs. He has what they call a pleural effusion on his right side (common issue with this surgery).
He is draining an insane amount of fluid out of his chest tube. It went from 50 mls on Wednesday to 370 mls yesterday, and he is on track to pass that number today. You want to see that number decrease every day and in a lot of cases be completely done draining by now.
His labs showed his numbers are off. His potassium is low and a couple of other things. I asked if they could do his potassium through his IV so I didn't have to cram it down his throat (that is the worst tasting stuff I have ever tasted). So we started it through his IV and I guess some patients say is kind of burns. They ran it pretty diluted, but Logan would just scream the whole time that it hurt. We tried to console him and help it for 20 min with heat packs and distractions, but it never eased up so we called it quits. By that time I was crying with Logan, and I don't think Brad was far from joining us. It was heart breaking.
I hate hospitals. I hate that by trying to help Logan we have to hurt him. I know the nurses think we are too easy on him and don't push him to do things that hurt. But I don't care, I really, really don't like seeing him suffer.
They did an echo to check his function and the fenestration in the conduit. Now this is where I might loose those of you not familiar with this surgery. With the Fontan they detach his inferior vena cava from his heart and add a gortex conduit to bypass the heart and connect it to the pulmonary artery to give a passive flow of blood to his lungs. They do a fenestration or a little pop off hole to help with pressures. The surgeon put a good size fenestration in Logan's conduit, but in the echo it showed his body has possibly already "clotted" around that hole. This gives him great oxygen saturations, but doesn't give a pop off for extra pressure. This could be the reason for all the extra fluid.
The other theory could be a medication he was on prior to surgery, Carvadilol, was started again yesterday. This isn't a med they use a lot out here, but felt like it was something his docs in Utah wanted him to continue on. This drug helped Logan so much before the surgery, but maybe he doesn't need it anymore. This drug slows the heart rate and helps with function. It could be that it slowed his heart rate down too much and is allowing fluid to build up. We discontinued the med tonight and we will see how the weekend plays out. If his drainage slows down that would be awesome. If it doesn't Logan will be visiting the cath lab to have that fenestration opened again and then put on some anti-coagulant drugs.
We are taking one hour at a time right now. Some hours today have felt like days and some have been good. We are trying to not give the hard narcotics for pain too much because they cause constipation and can cause urinary retention so we are treating pain with an IV pain med, but he can only have it every six hours. We do Tylenol in- between, but it gets rough. It is so hard making these decisions because everything has a side effect.
So there you have it. Probably way more information than anyone other than a heart mom wants to read, but that is our day.
We had few good moments today. We spent some time in the toy room. They had a Christmas party and Logan loved painting some ornaments that are now hanging up in our room. He played really well for a good hour in there. He also played play doh for awhile, but that got frustrating with only having one hand (his IV is in his left hand so he can't use it).
We can't get him to walk or stand up today, but we are trying. He has gotten about 5 new "reward" toys today as bribery to get meds down and stuff.
He is requesting a trip to the toy room, so we are going to go sneak in after hours... I will post some pictures later.