Friday we had a meeting with the GI doctor to discuss Sam’s liver. In advance of the meeting, I was a nervous wreck. No one would tell us anything, we just heard there was a blood clot in Sam’s liver. The only reassurance we had that it wasn’t something really serious was that the GI doc said that if we both couldn’t make the meeting Friday, we could meet next week.
Thursday evening we did a couple google searches, not much because we know better, but enough to get an idea of what we could be facing.
The results of Sam’s ultrasound with doppler showed that there’s a blood clot in his portal vein going into his liver. The good news is that they could see the blood flow into his liver; there was no reversal flow where the clot was blocking everything. The bad news is that they couldn’t see the branches of arteries/veins in his liver, branching from the portal vein. This could mean they’re clotted.
The worst case would be that the situation doesn’t improve and Sam would need intervention, either a graft to bypass the clots(s) or, at worse, a liver transplant.
We left the meeting feeling ok because they were just going to monitor things closely, no action to be done. We’ll need to know that he has, or has the potential to have, portal hypertension; if as he grows up he ever vomits blood, it’s a major issue, not something to be written off as a something minor. We’ll always need to make his doctors aware of his condition.
Also on Friday, because Sam’s blood gas levels weren’t great, they wanted me to hold off on holding Sam again. Ok sure, I want to give him a break, let him recover (just the act of pulling babies out of their isolettes to hold uses a ton of energy for them).
Today started out great; one of the local Moms of Multiples groups held their semi-annual consignment sale. I made it there right at opening and was able to snag several of the big ticket items I wanted (swing, bouncer, changing table, pack and play, bumbo seats, etc). Scott called me after he visited the hospital while I was shopping, asked me to call him when I was in private. Uh oh. He said he talked to Sam’s original doctor about his condition — he got a bit more information, information the GI doctor didn’t tell us.
If Sam has a congenital liver defect where his liver doesn’t have the branches, they haven’t grown, they won’t grow, there’s nothing we can do for him. He won’t survive. He’s too small for a liver transplant, he won’t survive long enough to be big enough for one. Um, crap.
Scott argued though, said that if this was the case, wouldn’t he have issues before now, wouldn’t he have already had problems. Until recently, his liver hasn’t had the inflammation. The Omegaven issue, his inability to process soy-based lipids, is not related to the inflammation. The doctor agreed. (thankfully!). Scott also argued that if Sam had those severe liver issues, wouldn’t Sebastien have them? After all, they have the same genes, the chromosome tests came back fine. Doc said true, but Sam also has a VSD and ASD in his heart, and Sebastien doesn’t.
Ok, point taken.
The doc did point out though that the lack of branches could be that his liver is just immature still, that they haven’t formed yet, but will. Hopefully they’ll be able to see them soon. Another scenario could be that they just can’t see the branches because the liver is so inflamed. That once the inflammation goes away, the branches will show.
I’m incredibly hopeful that the branches are just immature, like his eyes were for a while. At one point the eye doctor kept saying how hazy his eyes were, that he’d not seen anything like it. A few weeks later, they started to clear up and so far they’re fine. Maybe the same thing will happen with his liver????
Needless to say, I was incredibly upset again….just the idea that there could be NOTHING that could be done, that there’s no hope, oh my god, I can’t handle that.
In other not so great news, Sam’s blood gases aren’t getting any better. If this next one isn’t any better, they’ll put him back on the ventilator. I asked if that happens, could they call me so that I can come back in and hold him for a bit — afterall, I’ve only gotten to hold him once after 10 weeks in the NICU. The nurse said no, that it wouldn’t be good for him that he’s deteriorating. Cue the tears again.
In other more positive news, Sam did poop tonight!
In Sebastien news, he’s now completely off the cannula, no breathing or oxygen support at all! I was also able to breastfeed for the first time today. I wasn’t sure what to expect or how he’d do since he tends to get tired when bottle feeding. Well, he did great! Really took to it, was so cute seeing him go to town. He got new orders so that now they’ll start giving him up to 10mL by bottle every other feed. Hopefully soon they’ll keep increasing that and he’ll soon take all his feeds by mouth.