Feb 27, 2013

Mixed bag of emotions

 Monday night … Manny’s heart rate was erratic.  Normally he sleeps at about 90 but it was like 160’s.  This usually only happens when he has a fever (he didn’t), pain (he said he didn’t), stressed (he was sleeping) or electrolytes off (they weren’t).  So it’s a confusing picture.  But when does Manny do anything like he is “supposed” to?

The morning started very early and abruptly with a breathing treatment.  The Respiratory Therapist put on his albuterol/pulmicort mask and left the room.  I was still laying in bed trying to wake up and he was in his bed basically asleep when the heart rate monitor went off the chart.  He was choking.  I jumped up, pulled off his mask and saw his throat was completely full of liquid.  I grabbed the suction machine and started suctioning him.  It was scary and it all happened so fast!  So glad I knew what to do and was paying attention. 

Soon after that he went back to sleep and his heart rate went to 215! He was basically asleep.  The reading was real as I felt his pulse.  It all lasted about 10 minutes.  (And no, it wasn’t from the albuterol as he gets it 2 times a day every day of his life and it never affects his heart rate.) 

Through the rest of the day … his heart rate stayed high.  He’s usually around 110 but it was like 160, then an hour later 150, etc.  130s for the rest of the day. 

And more strange symptoms … he’s lethargic.  All day he’s wanted to stay in bed.  NOT like him as he always wants to get right up and in his wheelchair. 

Next, he’s weak.  Now I know you might think that a crazy thing to say but I can tell the difference.  He can’t sit today.  He had a hard time holding his head up. 

Next, he took a 2 hour nap! That never happens.  And no, he wasn’t awakened all night long so it’s not that. 

Next, he started scratching his wrists and his tummy.  Rash.  Raised, red itchy rash.  You gotta be kidding me. 

Finally, his labs from the afternoon came back … mostly pretty normal.  But his segs are high which usually points to something viral.  So that’s probably the cause of all the things I just mentioned.  I just hope it’s a “nothing” kind of virus. 

Unless anything changes, we should be going home on Wednesday. 

Now regarding the GI.  I talked to our Hospitalist and she says she really likes this particular doctor.  She will be giving her a call to see if she will take us and if so, how fast.  The good news about that is that she practices at our current hospital so we don’t have to lose all of our specialists!  That’s huge news!  It’s not a done deal but the hospitalist says she’d be shocked if this GI won’t take us.  She says she is the best GI she knows. 

Tuesday night, pretty uneventful other than a wide awake baby that did NOT want to go to sleep!  Heart rate still a bit high but nothing like the night before. 

7:15am, The head of the new GI group came in.  That makes it official… we have a new GI group! We will go home today with a script from the current GI to write a week’s worth of TPN. Then within the next week, I will see the new GI and they will take over the script writing and lab ordering, etc. 

I have a feeling they have no clue just how complex of a kid they just inherited is … but nevertheless, they got us.  :) And the other good part is that the Nephrologist will now have to follow him because of the new diagnosis.  So his labs will be reviewed! :)

Manny has hit all his discharge criteria and I now feel he’s stable enough to go home.  He’s not well.  He has some goofy symptoms but we can manage these from home. 

Also, Thursday morning, I have the first appointment with the ENT.  Hopefully she can provide some insight about his relentless post nasal drip.  The pedi had wanted to put him on Zyrtec but one of the side effects can be urinary retention.  And that would take us right back where we started!

I already packed, even though this hospitalist hadn’t come by yet.  But I know these things.  I’m such a professional hospital goer that it’s absurd. 

One unresolved issue is … well, me.  People have to realize, that even though I’ve done this hospital thing 100 times (not really, it just feels like it), and that in the past 2 ½ years I’ve been in the hospital almost as much as out … it still never gets easy.  In fact, he’s gotten so much more complicated that my learning curve is huge.  And if I miss something, it could cost his life.  That’s a ridiculous responsibility to have on a mom’s shoulders.  But I truly don’t see how to relinquish this responsibility.  Who would take it up?  Noone.  So I carry on. 

But it’s never easy in the hospital.  I’m physically tired from having no sleep.  No privacy.  No downtime.  I’m emotionally strung out because if he’s sick enough to be here, he’s SICK. So I worry.  And then to be on guard from medical mistakes constantly, it’s too much.  So under these conditions, I’m also supposed to have the emotional fortitude to stand up for him and confront the things that are going wrong.  I’d have a had time with that when I’m feeling strong.  I feel I’m “numb” almost the whole time I’m here.  It’s how I’ve survived all these admissions. 

And when some error happens, I’m supposed to remain calm. Use my big girl words. Confront with kindness. Stick to my guns. And be his voice and his advocate.  All of which sounds completely plausible when I’m under normal amounts of my lifestress.  But hospital stress is different and it circumvents all these skills that I possess when I’m home. 

And now that numb is creeping into my home life.   I’m exhausted.  Physically.  Mentally.  Emotionally.  I’m about to hit bottom.  2 weeks ago, I had a mini-breakdown in fact.  It only lasted a couple of hours but I felt like it was a panic attack.  I couldn’t breathe right.  Nothing had triggered it, just EVERYTHING.  I decided everything could wait.  I got the kids out some leftovers to eat. And I sat in my lazyboy chair and just STOPPED.  They knew something was wrong with me because I never do that.  I told them I was “sick” and they left me alone.  Dan was gone that night but I was able to muster enough emotional strength to get them to bed, nothing fancy, just got the job done.  And I went to my room, turned on mindless TV, drank a Dr. Pepper, ate popcorn and did NOTHING.  Went to bed early.  By morning I could breathe again. 

But it was a warning sign.  THIS CAN’T continue at this pace.  I just don’t have a clear solution yet!

And yet … I know that I don’t talk about this much because … I am his mother and it’s my job to do this so I suck it up.  I’m wound so tight right now that there’s nothing left to suck up!  

And to be quite frank, I feel like if I complain or say something about this, then it means I’m not able to fight for him anymore.  And I will NEVER stop fighting for him.  I have told him in no uncertain terms … that as long as he is fighting to stay here with us, I WILL FIGHT FOR HIM!  Bottom line. 

Wednesday 1pm:
I know he's met discharge criteria to leave today.  And then ... about 20 minutes ago, he got a fever.  100.5.   We haven't seen the doctor yet and I don't know if his discharge criteria is under 100.4 or under 101.  So we're in that gray area. 

1:30pm ... confirmed:  Staying.  (sigh)


  1. Read thru twice. A lot of those symptoms ..swelling,rash,extreme muscle weakness Dane had when his hospital stay started. Sounds like you have the medical side under some sort of control..ya I know that's a misnomer but for right this very moment.

    Your being at the fried point is so absolutely understandable and maybe it's time to start asking for some help..even. Few days a week so you can have some respite. Get them trained up now in a lull in the storm that is these kids lives at times. You have to feed your self Nd your mental and emotional health or there won't be any to pass out to your family. That being said I know it's HuGE to try and do. 1 step at a time tho it can happen. Ask those docs for some help...tell them your feeling crispy and want some additional help for him, home health agency.. Hang in there honey, wish we were closer so we could step in and help..mani/pedi time even :)

  2. I agree with Janet. It seems that you should be entitled to have some extra home nursing care. What if you were to get a night nurse who you trained TO THE HILT, whose job it was to stay awake in his room, to turn him and suction him, check vitals and do the TPN (with ONLY YOU DOING ANY SITE CARE). If he or she were to have any problems you could be awakened but otherwise get some good nights of sleep. You are in my prayers. Lord, have mercy. Christ, have mercy. Lord, have mercy.

    in Las Vegas