update 3 – one of those appointments


Today was a long day.  Ever notice how slow time seems to go while you’re sitting and waiting?  Especially in/at a hospital?

Waiting for updates, results and to find out what the plan is going to be, time went by slowly.

Patrick did have his ultrasound this afternoon.  He did great!  Ultrasound was on his abdomin to make sure there were no pockets of fluid, cysts or the like that would/could be contributing to the issues with the shunts.  My understanding is that all looks great!

Finally just before 630pm, I was heading down the hall to get some cold water for Patrick, when Marilyn (Patrick’s nurse today) waved me over.  Dr. Ranger was on the phone.

It really makes Dr. Ranger think when it comes to Patrick.  Nothing is typical! Absolutely NOTHING!  He doesn’t follow any books, documents, research…anything.  Patrick is his own book, and he keeps writing new chapters for everyone to learn about and learn from.

It seems the thought and plan is/will be as follows:

  • Both shunts appeared to work during the shunt-o-gram, but the left was sluggish
  • They orginally thought they would replace the left shunt
  • Since the re-programming and having no change in his ventricles, it appears now both shunts are not working, but…it seems the programming valves are the part(s) not working now
  • Do they change one and see how he does?  If he doesn’t do well with one, then go in again and change the other.
  • Do they change both at the same time, set him back to 60 where’s he’s been for the past 6 yrs or so and see how he does?

Patrick’s shunts are not ones that are kept in stock.  They are special shunts and have to be ordered.  They will take a couple days to arrive.

Reading this, you think it all sounds so simple.  It’s not as easy as it sounds, trust me.

One last test to be done before surgery, a shunt series.  A Shunt Series is just x-rays of the complete shunt(s), top to bottom.  Checking to make sure there are no breaks/kinks etc…  It will likely be done tomorrow.

So we wait again.

Dr. Ranger lost her O.R. time this week because the hospital decided to close down the O.R. on Wednesday (her day) this week.  So the only time she can get is time someone else will give her, of their time, or to try to fit in on an emerge list.  She can guarantee surgery next week for sure, but she is going to try to see if she can get some time from someone somewhere and do it this week.

If she isn’t able to get time this week, and if Patrick is doing ok clinically, we will go home and come back next week, when she has time scheduled.  I’m really hoping to get this done THIS week!  Before School!!

Either way, it appears he will not be making the first day of school.  He’s going to be upset about that.

Like I said…now we wait……again!

I’ll keep you posted.  Thank you everyone for your kind words, thoughts, prayers and hugs!  It’s truly appreciated.

Have a great evening! I’m off to bed!

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