Apr 9, 2013

The circle that never ends ... admitted

I ran across an article today and I felt it so enlightening I had to share it with all of you.  Hope you enjoy it too.  This isn’t just about Manny … it’s about any time any of us deal with people who are hurting in any way (which is OFTEN).  I don’t know if this is 100% foolproof, but it sure makes sense to me!

Now … with that in mind … Updates:  I wrote about how Luke has been sick.  Today (Monday, April 08), I took him to the pediatrician and she agrees that he is ready to go back to school tomorrow.  He’ll be tired and need to take it easy still but he’s good to go. 

Sam’s rash isn’t any better but not worse either. 

Jacob and Zoe are still fine. 

Kaley is burning up with fever, sore throat and horrible headache. 

Manny is in the hospital.  His fever was 103 and that’s just not OK for a kid with a central line and respiratory complications. 

I actually cried.  Probably partly due to the stress of the situation.  But mostly out of Mama guilt.  When a kid is sick, he/she needs to be with his/her Mama!  Today I had to leave Kaley at home struggling while I   am at the hospital with Manny.  I can’t stand it! We have it all set up for Kaley to be ready to go with foods she can eat, juices, medicines, etc.  But still … sometimes you just need your Mom to hold you and wipe your face with a cool rag, to wait on you hand and foot. 

I’m sure she understands why I have to choose what I did … but still.  I wonder if there’s not some small part of my kids that believes I love Manny more than I love them.  They’ve never given me any indication of that … but it’s my concern.  They understand.  But it still hurts. 

So what landed us here this time?  At 3am, when I was repositioning him, I noticed his heart rate was sky high and then when I touched him he was burning up with fever.  By morning it was no better.  So I called for a room. 

His fever has gone up since being here.  And even on Tylenol, it’s still 100 plus.  Poor dude. 

Tuesday, April 09 …

The night was a predictable kind of hospital night.  Lots of beeps, interruptions, wake ups and not much sleep.  We had a tech that knew us well and she came in for every 2 hour temp checks, even if he hadn’t run a temp over the past 2 hours.  We caught a couple of fevers on their way up that way.  (It’s harder for his to come down if it gets out of control.)  His heart rate was very fast all night.  But pretty much an uneventful night. 

The Nurse Practitioner for the GI came in at 5:30am asking, “Have you ever tried feeds?”  Let’s say … it’s not so easy being asked such a dumb question in the middle of the night.  I mean seriously?  How does a person go straight to TPN?  Was she really asking if in his almost 4 years of life if we have EVER EVER tried to feed him?  And what doctor would have just allowed him to go from birth to TPN and never even trial coming off?  I wanted to say, “Uh, NO!  We never thought of feeding him.  Think it would work? Bring me a hamburger and I’ll try it!”  But I refrained. 

Instead, I said yes.  He has a long history of failed trial feeds.  The last one? She asked.  February.  I told her how he failed even water.  She said, “Oh Pedialyte?”  To which I said, “No, WATER.  We trialed formula.  It didn’t work so we trialed several others. Then we thought maybe it was a component of formula so we trialed Pedialyte. When that didn’t work, we tried WATER.  THAT didn’t work.”  Her response, “Oh.” 

She asked what happens and I tell her, “5 ccs of water went in over an hour and 100 came out via the gtube.”  She says, “So reverse motility.” (Like it was a simple thing.) And I again repeat, but with more emphasis …” FIVE ccs go in and ONE HUNDRED come out.” 

I then asked her if she knew why his potassium and sodium would be low.  She started saying something about how different labs use different values as their normal range.  Now, what in my question implies that?  I had to stop her mid-sentence.  I told her that I’m OCD about his labs and he usually has low potassium but never has low sodium.  I could tell … she didn’t know.  So I let her off the hook. 

So she leaves saying, “I guess we wont’ change anything.” To which I say, “Great.  Thanks.”  I mean seriously? (sigh)

Are all GIs just used to dealing with idiots? That’s how it feels. 

Back to sleep. 

7am … there’s LOUD knocking on the door.  Repeatedly.  I’m not about to yell, “Come in” as it will wake him up for no reason.  It’s the Respiratory Therapist.  He gets this so often that he’s learned to sleep through the treatment.  And there’s no reason for him to participate.  But she flips on the light above his head and starts to wake him up in a rough way.  He starts to fuss a bit like, “Leave me alone” kind of light fussing.  She then says she is going to do his breathing treatment but the way she said it, he thought she was going to do the dreaded Choo Choo Train.  He started crying and saying NOOOO.  And then she fussed at him.  She went right in his face and started rubbing his hair roughly (with gloves on so it wasn’t comforting, it hurt).  And she was telling him things you wouldn’t tell a 17 year old about bucking up!  By this time I had enough so I said, “If you just start the treatment, he’ll stop crying. He’ll probably even go back to sleep.  He usually sleeps through his treatments.” 

Then she took her slow sweet time getting the medicines set up.  Probably about 4-5 minutes.  The whole time he was screaming.  I could have probably stopped him but I felt it was good feedback for her.  Eventually she put his mask on and he immediately shut up like a light switch.  It was crazy funny to me.  And he dozed off. 

If only someone could have predicted that.  (Eyerolls)

Do people just forget that small people are still PEOPLE?  I’ve noticed that people would NEVER do certain behaviors with adults but think nothing of doing it to children.  Well, I take that back, those same people would also likely mistreat the elderly too. 

How ironic.  The people that need the most protection … the young, the old and the disabled, are the most mistreated often.  That’s just not right. 

Meanwhile … his labs are pretty much what I’d expect with him sick.  I keep a spreadsheet of all of his labs and this is about what we should see when sick with a viral infection (which is what I expect it is).  But the strange part is … his sodium and potassium are low.  The low potassium is expected.  The sodium is not.  Kidneys??  Fluke?  So strange. 

10am, the Palliative Care doctor visited.  I told him of a few of my issues with some doctors (NONE of the above list of complaint met the list of things to tell him by the way).  It’s process issues like … he needs iron.  How do I get it?  Shouldn’t be this hard.  Yet it is.  Again.

10:15 temp still.  Due for Tylenol.  We administer it.  It’s 17 ccs of liquid. (1.1 Tablespoons) and he starts retching violently.  His stomach has to be drained.  He has to be suctioned.  Just to breathe.  Crazy huh?  Guess we need to move to Tylenol suppositories.

Now we sit and wait for his fever to go down, his viral respiratory panel to come back showing what he has and for his blood cultures to come back (hopefully negative). 



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