December 6, 2012

Outside Temp: who knows...  cold.

What I cooked today:
No time to cook...and no kitchen...

Update:
Ryan had his 'hospital' day today!

We stated the morning with an ultrasound of his legs.  He had a DVT (deep vein thrombosis, clot in his thigh) when he was about a year old.  The body had a way of re-routing the blood flow and he's never had any lasting problems (other than his veins are very prominent in that leg), but the doctors wanted to check the rest of his legs, just to make sure.  His legs all looked great and he had no other issues here.

From there, we headed over to MRI.  A few years ago, we found out that Ryan had a narrowing of one of his veins in his chest, the one that goes through the liver and down into the rest of the body.  They thought that his liver, which was enlarged from all the infections and other problems, was pushing on this vein, and restricting the blood flow.  As a result, his blood pressure had increased and it was causing large veins in his intestines (one of which ruptured, causing GI bleeding, which is not fun).  When we found the problem, the doctor went in and used a balloon to dialate his vein.  If I remember correctly, she said that the flow was restricted by 90% before the balloon (meaning that only 10% of the blood could flow though the vein).  When she finished dilating it, it looked to be only about 20% restricted (80% of the blood could go through), but she warned us that we would need to keep an eye on it.  And, that we would probably have to do this balloon dilation thing every 2 years or so, until he gets big enough for a shunt or some other device to help keep the vein open.

So, this morning, our MRI was scheduled to push contrast into his veins and figure out how much the vein has narrowed.  For this, they have to put him to sleep, which is always fun.  The procedure lasted about an hour, and he came back very, very sleepy.  But, of course, they can't tell me anything, until the doctor sends a report to the other doctor.  Oh well, it was fun to wake him up and deal with the wobbling and 'out of it' hour or two before he finally got all the meds out of his system.

We went back to the hotel to get checked out, had a great lunch and headed back for clinic at 1:45.  For the record, Ryan is 59.5 lbs and 123 cm.  Which means that in the last 3 months, he has gain about a pound and 3 centimeters, which is over an inch!  Woo hoo!  The doctors and nutritionist were ecstatic.  As a result, we have decreased his TPN, again!  About 6 months ago, we dropped the sugar from 22.5% to 20%, and we were watching him to see if he could handle it.  Since he did so well, we are going to drop it again to 18%!  If he does well on this, they will re-evaluate in another 6 months.  All is going to plan and we are thrilled!

After the initial high over his weight and height, we got the results from the MRI.  They were inconclusive.  Ugh, I hate that word.  The GI doctor was a little concerned, since they didn't say everything was fine, but it was late in the day and we had limited options.  We decided to go back over to Radiology and get an ultrasound of the area we were concerned about.  There is some debate over the usefulness of the MRI over the ultrasound, and perhaps the ultrasound could give more definite results.  We haven't had a MRI in about 2 years, and our other doctor's warning kept going off in our head.  So, the tech started the ultrasound of his veins in his belly.

We started a movie as we came into the room, and about an hour later, the tech asked another tech to come in.  A few minutes later, the new tech asked us what exactly we were looking for.  I explained his history and she kept looking around.  Finally, she looked back at us and said, 'it all looks good to me.  But let me go show the images to the doctor and he'll come in an talk to you.'

A few minutes later, the radiologist came in and said, "Looks great.  No narrowing at all.  I can't make it any better!".  Oh my gosh.  Patrick and I were stunned.  The doctor also suggested that we just do the ultrasound next time, since he doesn't need to 'go to sleep' for it.  Woo hoo!  Another great result!

So, on that note, we started the trek home, but I'll write that one up in tomorrow's blog!