Head is spinning

8am Monday … Joe (The PA for the surgeon) came by.  He is blunt and direct and I like that.  I don’t need things sugar coated!

So for a history, Joe is the PA for Dr. Martinez.  Dr. M has done all of Manny’s surgeries up to this point since we adopted him.  He was the one who took out the sick/dead/ruptured gallbladder and was almost to the point of tears when he told me of how sick it was and how stark that was in comparison to Manny’s affect/behavior.  He did his two central lines.  The one that lasted only 3 weeks and 2 days.  The one that’s lasted a year.  He’s the one who told me Manny is out of veins in his chest. 

Joe has been there through all this with us.  So when he comes in and says we will have to have this line replaced, he knows this is a BIG deal.  I asked him to be creative and think out of the box and see if there were ANY ideas of trying to save this line.  He said there were a few things we still needed to try, things they wouldn’t normally try, but they go to heroic measures to save his lines! And I appreciate it. 

Among the ideas: Possible one more TPA attempt.  Maybe a dye study.  May try Interventional Radiology to see if they can do something to unclog the line.  There’s a very slim chance one of these things would help … but I’ll take any little bit of hope.  I told Joe, “I believe in miracles.” 

IV team will be by sometime after 9am.  They will troubleshoot with me as well. 

…

The day has FLOWN so it’s 7:30pm as I finally get around to writing the update of the day.  Trying to recreate it all from memory. 

9:20 IV team came by.  The other day, .5 of TPA went in but they were only able to get .3 back.  So that left .2 in the line since late Saturday night.  Wendy went to pull it out and with it came an air bubble.  That’s HUGE news.  She pulled some more and we felt like something was budging.  She took off all the connectors and looked directly into the Hub.  There was a block of “gunk” in it.  We could see it just sitting there.  That was NOT there Saturday! So it worked its way there.  That’s huge. 

Over the next 30 minutes or so, she milked it and even dug some of the gunk out.  Long story short, it worked!  The line opened up!  We were able to get blood out and fluids in.  THAT’S HUGE HUGE HUGE.  He gets to keep his line! It was still a bit sluggish so they did one more line of TPA.  And now it’s basically back to new.  You all need to start screaming shouts of praise! 

Then the job of cancelling all the consults began!  Happily. 

Manny got his IV iron. 

Nephrologist came in … I like her!  We discussed acute and chronic managing of his labs.  We are on the same page.  (Gotta love that!)  She felt like if his labs are stable, we can go home tomorrow (Tuesday). 

One of the things that I started researching was the CAUSE of the new diagnosis of RTA.  And I couldn’t really see how any of them fit Manny.  So I thought about it in a new way … wonder if RTA is related to mitochondrial disorders?  So I googled it … yup!  I found the most interesting article that shows most of his deficiencies might be mito related, even things I thought were unrelated. 

Paula from the MDA came in and they’re going to run a mitochondrial test.  FINALLY might have answers eventually here.   Why does it matter?  Because some are treatable.  And if he could even gain some ability to use his gut, we could lessen the risks of TPN.  So it’s worth trying. 

While Paula was here, our current GI came in and said she felt like he needed to be stable for a few days with his labs before she felt comfortable discharging him.  So we’ll have to see which specialist Doc sides with.  I’m good either way as long as he’s safe. 

She also said that as of Friday (March 1) she is no longer able to take any patients with his type of insurance.  So literally, as of Friday, I have no GI.  Now all the rest of my kids have no GI , so clearly you can live without one. That is, unless you’re TPN dependent.  We get bags of TPN made up a week at a time. So we have a max of one week to get a new one.  But that’s not really accurate since the new one will have to meet us, assess him, establish him as a patient and start writing TPN orders. 

Trying not to panic but the truth is … we are running out of options!

The rest of the day was me researching, emailing, calling doctors. 

My head hurts. 

I know that God has this.  I know He will provide like He always does.  Of that I am completely confident.  In the meantime, I continue to walk it out.