May 22, 2012

Beyond Exhaustion

I've been contemplating.  "Tired" must be on a spectrum. 

On the beginning end is "Tired".  Then "Beat".  Next is "About to pass out."  Then comes "Exhausted".  Finally, "Beyond Exhausted". 

That last category of "Beyond Exhausted" is just a broad term to say, "More than exhausted". 

But I want to know ... what's on the other side of THAT? 

And that is where I am. 

For a long time I've been in chronic sleep debt.  Nightly, I wake up at least every two hours to reposition Manny.  Many nights, it's much, much more.  And I do it happily.

Then when he's sick, it goes into hyperdrive.  Throw in a couple of other sick kids and it's the recipe for disaster. 

Now everyone knows that nobody gets any sleep in a hospital.  So during this acute phase, my exhaustion numbers are off the chart. 

Manny is just not feeling well.  Last night, the cold type symptoms kicked in and he was having a hard time not choking/aspirating.  I suctioned all night.  I kept sitting him up for a better angle for him to cough it up.  (His bed is already at about a 45 degree angle.)  I'm going to do everything I can to keep this from turning to pneumonia. But of course his pulse ox machine kept alarming.  Not enough or long enough to put him on oxygen, but enough to wake us up OFTEN.  

The regular nursing things happened of course (medicines, blood pressure/temperature checks, etc) but he had extra stuff last night.  The TPN ended in the middle of the night.  Then he gets a 3-4 hour break and they had to rehook him up.  These are not quiet tasks.  They involve new tubing, etc. Then there was the blood draw.  They wanted him turned off for a while before disconnecting him to draw the blood.  Then the blood, then reconnect. 

Of course an hour later, the blood glucose test came back "wacko" at 37.  (For the record, it should be closer to 150 or higher since he is on TPN.)  So that meant he had to get blood sticks hourly for the next few hours until it regulated again. 

And of course there was the part of my brain trying to figure out why he suddenly stopped urinating. 

The other part of my brain was wondering if he was sleepy/tired and fell asleep so early yesterday and it was just a coincidence.  Or was it a result of the iron?  And is that even possible? 

By then it was 7am and time to wake up.  Change of shift.  Bedside nursing reports.  And he was ready to go for the day.  Me? Not so much.  Why it is that I don't like coffee???  (groan)

I can feel my brain... feels "fuzzy".  I feel like it's 3am and I have been pulling all nighters ... oh wait, I have!  But in my 20's I could handle it.  At 43, I just feel like a tank pulled over me, wasn't sure the job was done so it backed up and did it again. 

And just because I don't have enough to "fight" for, the nurses just added that I can no longer have Manny's labs.  (Apparently it's a newish policy and they were doing it for me anyway.) I can't even get my tired brain around that one.  But just means I'll talk to Cartaya and let him know nicely that I want "permission to give Mom the labs" to my chart.  (SOOOOO glad I know the ropes around here and this will only delay receiving the labs by a couple of hours ... but I hate red tape, especially tape that makes no sense.)  So as of right this minute, not sure what is going on with him but I should soon.  ::eye rolls::

And for the record, I asked why the change in policy?  Apparently, most parents that ask for it also ask for an explanation of the labs (which the nurses aren't authorized to give) and/or they ask "Are they going to DOOOO something about this?"  (Uh, duh).

Doc just left, Yes, of course we can have the labs and he'll write the orders in the chart.  :) 

As soon as we are fever free, we can go home!

Been studying the labs and, well ... they are concerning still.  Even after the transfusion.  Not sure what to think of them. 


Still has a fever.  Had the worst night ... couldn't stop coughing and now it's "coarse" down in his lungs.  They just did a chest xray ... waiting for the results.  Cool part is that they did one on Thursday so they have a recent one to compare it to. 

Today is the day we needed a dressing change on his broviac/central line.  As they were cleaning it, they noticed a small crack in the line.  As of right this second, it's not all the way through so that's good news but it could break at any time.  They taught me what to look for, what to do and how to handle it if it were to break.  It would be considered a medical emergency.  One more thing to worry about.  The only good news in this is ... this is repairable.  They talked about going ahead and doing the repair now but given how close the break is to his body, they felt the risk of repair would be more dangerous than not doing anything at this point. 

I'm very, very thankful this happened the way it did.  I do many of the dressing changes.  I'm not sure I would have noticed it.  And I was never trained on what to do if it were to break.  I had no supplies to stop it.  So this has prepared me for the emergency to come. 

Kaley has finally come down with the flu too.  Dan is going to come get her and take her home.  And if I keep saying, "I am not sick" over and over ... that should do the trick right?  That will take the place of the aches I feel and the horrible headache.  Right?  (Don't burst my bubble.) 

Saga to be continued.

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