Saturday update

Sorry it's been a few days since I posted last.  It's taken some time to adjust to our new routine, but we're getting there.  Our feeding and medicine routine has become a bit overwhelming and I feel like I don't get anything accomplished because I'm constantly trying to get Stephen to eat, then putting his formula into his g-tube and administering medicines.  By the time I finish that and get everything all cleaned up, it's practically time to start all over again.  The biggest problem is that Stephen isn't eating well now.  He's only drinking about 20 out of the 95 ml's of formula he needs (every three hours), so I'm having to either hook up his feeding pump or gravity feed the rest of the bottle by hand each time.  It's not a huge deal, except I'm getting a bit concerned that he might have an aversion to either the new formula or an aversion to taking things by mouth.  If it's the latter of the two, we could potentially have a big problem.  So the doctors are going to have to figure something out to get him eating again.  And we're now back to seeing the nephrologists every week.  Oh and did I mention Stephen has terrible diaper rash again?  Yep, he does.  So I'm trying to wash his bum at each diaper change to prevent him from getting any kind of bacteria in the open sores.  And...we now have to take an extra blood pressure reading at midnight when I hook up his feeding bag.  As if I don't already have enough to do.  But since Stephen doesn't sleep, I guess the blood pressure reading isn't that big a deal.  Ugh.

We also met this week, for the first time since the NICU, with Stephen's GI and liver doctor.  His liver enzymes and labs are good, but his liver is getting bigger and it's shown on the ultrasound that both the big and little liver bile ducts are having issues (I think that's he was saying).  Unfortunately, I haven't been able to really fully grasp all the liver issues.  The first time the doctor explained all of this to me it was over the phone in the hospital and this time while he was explaining it to me in the office, Stephen was actually throwing up from him pushing on his stomach so much.  So both times, I had a difficult time concentration on what he was saying.  Plus I also think my brain is just so jam packed with so much other medical stuff, the liver stuff just isn't sinking in.  The bottom line is that we're now on a medication to help prevent colingitis (an infection of the liver), which is something Stephen will probably inevitably get, he definitely has Caroli's disease, and right now he doesn't need a liver transplant, but that's not to say that he won't eventually need one.  Hopefully, he won't need a transplant, but maybe just a shunt to help blood flow through the liver.  So the plan is to get the kidney transplant ASAP and then deal with any liver issues later down the line. 

I haven't really mentioned this yet, but we're also seeing Dr. Kim, Stephen's surgeon on Monday.  It's time to get his hernias fixed.  The nephrologists have had to back off on Stephen's dialysis volume to prevent the hernia's from getting stuck down in his scrotum.  So his dialysis isn't as efficient as it should be.  So once the hernia's are fixed and healed, hopefully that will help improve the performance of his dialysis and maybe also make him more comfortable.  Who knows?  And since he's going to be under anesthesia, we've also decided to get Stephen a mediport.  Labs are a nightmare for us.  You all know that by now.  And having accurate labs are crucial now.  No more messing around with it.  So he'll have a little port under his skin (nothing will be external) that the nurses can access to draw his labs and administer some of his IV medications.  There is some risks of course with the surgery and with potential infections and clotting, but the risk of not knowing what is actually happening with Stephen's electrolytes and labs we think is greater. 

If anyone has any experience with mediports, I'd love to hear your opinions.  Good or bad.  Trust me, I've had some bad already, so you won't offend me.  And we trust Dr. Kim with Stephen's life and know that Dr. Kim would never do something that would risk Stephen's life.  But we'll know more after our meeting on Monday.

Oh and did I mention I some how caught a sinus infection/head cold?  Yeah, not cool.  Let's just hope Stephen doesn't catch any of my nasty germs.  Right now he's out for a walk with Dad.