You gotta be kidding me

Darnit! I *KNEW* our lives were getting too quiet and I hadn't been in the hospital enough this month yet. Tonight, Manny's PICC line cracked! What does that mean? The past 3 hours I spent on the phone with the home health nurse, then the GIs and we came up with a plan ...
 What happened?  How did it crack??  There is NOTHING that we do that could crack it. We don't even TOUCH it. (Mostly because the more you touch it, the more likely the infection.) There is this tube like thing that come out of the skin. At the end of it is this "hub". Those parts are all permanent and part of the PICC line. After that, there's an extender. This part is changed about 1 time a week by the home health nurse. We put the "milk" into the extender. So literally, we NEVER touch the hub. THAT is the part that has a huge crack right in it.


I discovered it because tonight, I hooked up the milk like normal and then an hour later I saw a puddle under his high chair. I then ran the line to find out where the hole was and discovered it was the Hub!

Called the home health nurse and they confirmed what I knew ... nothing can be done except a new line. and of course friday is a holiday and then the weekend.

Thursday night he went to bed normally and all was fine.  The night was uneventful until early morning when he got aggitated and was alternating between grumpy and dead asleep.  When it was time to wake up to take Zoe to her post op appointment, he was very difficult to wake up.  He would talk for a few minutes then right back out cold.  (Not like him.) 

Went to Zoe's appointment and on the way I called the pediatrician. She said to take him to the ER and she called ahead.  I went ahead with the appointment for Zoe since we were there.  (More about that later but quick version is all is well.)  The office staff noticed Manny was not acting right and I told them what happened.  They told the doc and she took us right in.  While in with Zoe, the surgeon got an idea to call the IV team (that's who the ER would have called) and got Mani on the phone.  (I've mentioned her before several times.)  And she said to bring him to this certain spot in the hospital. 

This hospital is across the street from where we were.  Mani looked at it and knew immediately it couldn't be repaired.  The site looked great but she knew that due to the large crack, infection can set in from the outside AND a clot can start on the inside since we can't flush it... so she took it out.  (He didn't even wince!)  We decided I should call Cartaya (also mentioned him before) and get the ball rolling to get the central line/broviac placed. 

Cartaya felt we were probably good enough to go home on pedialyte and be admitted on sunday night to get the thing placed on Monday.  (He told me the warning signs to come back sooner.) 

And I headed to the van, relieved. BUT ... this gut feeling said not to leave. So we ate a snack and chilled for a few minutes.  While they did that, Manny was acting VERY weird.  He said, "I not OK".  I was praying for wisdom.  My "gut" said to stay.  But I also wanted to go home.  So I called Dan and he said to get it checked out, to go with my gut. 

Went into the ER.  The doc immediately noticed he was "passed out" and his skin was FREEZING so he decided to do an accucheck ... and his blood sugar was 36!!!  Seriously, dangerously low.  They gave him 350ccs of dextrose solution and in one hour his blood sugar was 251.  She didn't believe it so she rechecked it and it was 261.  (Dangerously high.)

Thankfully I thought to bring in the TPN bag to show the solution he is currently on.  They were in shock that he was at 70% dextrose ... apparently, that's excessively high.  But while on it, his sugars are stable and normal. 

So the question is ... why does he have to have that much dextrose to keep his sugars stable?  AND what can cause him to crash that quickly (when they thought he should be fine for 4 days off of it and on pedialyte alone.   Cartaya is thinking some kind of metabolic issue.  (Interestingly enough, Shands thought the same thing about why he couldn't handle food but never followed with that train of thought.) 

So tomorrow they are going to take some more labs and I will be seeing an endocrinologist for the first time.  The current thought is that Manny must have not just one but TWO rare conditions.  (My thought for a while now since all his symptoms can't be explained by the Merosin alone.) 

We got up to  room and they did all the regular checks ... and now (after being off the dextrose for 4 hours), his blood sugar should have stabalized but it was 296!  Going the wrong way.  Call into the doctor.  They put him back on dextrose and pedialyte.  They'll check him again at 11 pm. 

Meanwhile, Surgery came in for a consult and he remembered us.  He did our muscle biopsy in April which gave us the diagnosis of Merosin.  He said that clearly manny needs the central line ASAP but they can't put that in until he is stable.  To get stable, he will need to be back on TPN.  To get that, we needed another PICC line.  (sigh) 

The same Mani ... from earlier in the day who removed his PICC is the same one who is called back to do it.  We all laughed.  She said they NEVER do PICC lines on kids this age without sedation nor with a parent in the room.  But based on my word that I could keep him still and calm and that he would be fine, she tried it.  She was not confident at all that this would work and we all decided that we would abort at any time that we needed. 

We proceeded and long story short, it was a piece of cake!  This was easier and faster than a regular IV line.  He was given some light versed to take the edge off and he was FINE!  She was in shock at how easy and fast (about 1 hour faster than expected).  I was so grateful, she was so relieved.  Now Manny can get his labs done in the morning PAIN FREE.  And we can start PTN back up tomorrow once they get that solution made (it takes time).  (insert breath sound here) 

There are soooo many details I'm leaving out because this is already so long.  If the details are still fresh and relevant tomorrow, I'll write it then.  If not, it wasn't meant to be. 

Also, don't be shocked to see me writing more blogs soon as I still have to send the one I wrote about Zoe's post op to surgery and I will write one about Kaley (who turned 11 today!) and a few other random thoughts. 

Summary:  Manny's not a typical kid (in either his highs or his lows).  He's still not out of the woods right now and they are watching him very closely.  He's not considered stable yet ... but we think we have a solid plan in place to get him there. 

start him on pedalyte via jtube tonight. First thing tomorrow, we see if (on a holiday) there is a team that can put in a central line. If not, we have to wait until Monday likely. And that means we'd be admitted likely tomorrow. The doc... said they only let us stay home tonight because of the kind of Mom I am (awww). Ironically, we were supposed to see the Doc on Monday to discuss the need for a central line and how soon to do it. Guess Manny just had a different timeline.