Nothing ever goes as planned

After many days of very decreased urine output, and trying to get fluids at home, and consulting with the Nephrologist … we were finally admitted to the hospital on Saturday. 

So Manny is all about the drama as many of you know. He is off TPN for 4 hours and then has to get back on soon or blood sugar will crash. At the 4 hour mark, his line wouldn't flush. So we hit emergency mode. Now it's about someone who can get a peripheral IV line in him ASAP.  There is no IV team today so called the ER and thank God they got it on the first stick!

Then he passed out so we knew his sugar... was low. Got the sugar dosage in and he eventually woke back up. Now we are getting his fluids in. He cries any time someone walks in the room (and they do that often).  They are babying the IV because if it stops working, they have to get another one.  No one wants to do that!  He’s pretty pitiful.  He covers his IV and points to his broviac and tells them to “Use this one!”  Smart dude. 

Now regarding the decreased urination … He's had one diaper in 36 hours and it was 79 ml! That's a squirt. So something is off.  But what?

His labs are coming back in and they are relatively normal. So even more confusing!   Nothing shocking. 

In the meantime, regarding his clogged central line … the IV team isn’t on for the weekend so we’re on our own.  They have an on call person for a few hours on Saturday morning but that’s it.  They put a call in anyway just in case.  I texted my IV team contact.  She asked me to call her and she walked me through what to tell them to do.  THANKFULLY! 

They have instilled something called TPA in his broviac.  It has to dwell in there for 2 hours to get it’s full effect.  We’re really hoping it does the trick and we can once again get blood back and put fluids in.  If so, we can pull his IV and use his central line again.  Putting it in was a trick. The nurses on this floor had not done it so they had to consult someone who had.  They thought they had it all together but … there was a problem and it didn’t work.  So I again called my IV friend and I put her on speakerphone to walk them through it.  It worked!  The TPA went in. 

I’m so very thankful for friends that are resources.  If she had not been available, I was going to call my home health nurse who draws our weekly labs.  She also does TPA and could have walked us through it.  I had my plan a, b and c. 

Now we wait to see if the line cleared.  We will know at 9pm. 

9pm … the nurses and I actually prayed before they did it.  But alas, nothing.  The TPA didn’t work. 

At the same time, I noticed he was getting quite ademic (swollen with fluids).  Like his socks which are normally loose were tight on his legs, the ID band was cutting into his leg, etc.  And at this point, he’d had 450 ccs of fluids in (over 5 hours) but nothing out!  This is called third spacing where fluid goes into the tissues themselves instead of staying where they belong.  It was even going in his lungs and he developed a pretty good wet cough.  (This can easily lead to pneumonia for him.) 

Nurses called the doc who ordered a bladder scan, urinalysis and another round of TPA along with a chest xray to show placement of the central line.  The bladder scan showed barely any pee in there, which means it was all over except where it was supposed to be!  He just needed to pee. 

Over the next few hours, he did eventually pee just a bit and it was enough to get the urinalysis which showed nothing abnormal. 

The 2^nd dosage of TPA went in at 10:45pm.  And out at 1am.  Again, nothing.  :(

Chest xray showed the central line is in place and not kinked. 

Meanwhile, I contacted the other central line moms to see what they have ever heard, seen, experienced regarding this.  And they all said the same thing … two failed TPAs and then it’s time to replace the line.  Just typing that sentence makes me want to throw up!

Now none of that is confirmed as I type this yet.  The doctor is unaware that the second TPA failed.  We figured it didn’t change anything to call him in the middle of the night so why bother him for it?

So we wait. 

In the meantime, he’s got a peripheral IV.  It’s on the inside of his wrist (those teeny tiny veins).  The IV team calls them “the mean veins”.  They hurt.  And that’s the only way for him to be getting fluids or medicines.  In fact, he’s not going to be able to get some medicines (like Iron) without the central line.  And we have to protect this IV like crazy or he’ll have to get a new one and that’s not an easy feat.  But these peripheral, small veins tend to “go bad” pretty quickly. 

Stay tuned … (Finished writing this Sunday midday)