Fast Forward

Fast forward after Boston…   while we were in Boston, the current GI changed the TPN formula that we would receive when I got home.  I caught several errors in it. MAJOR errors. Including under minimum maintenance levels of fluids.  (This will lead to dehydration.) Plus way under calories for a child who is losing weight.  (Along with other errors.)

Losing weight?  Yes, a year ago he was 13.5 kilos.  And now he is 12.8  In between he got to a top of 14.4 kilos in July.  So clearly, he needs additional calories, not less.   A 3 year old his size who is active needs a minimum of 1200 calories per day.  He is not as active as a neurotypical 3 year old boy so his needs are less.  He was doing great on about 950 calories per day.  Then they adjusted it in July to 920 and that was the difference.  Slowly slipping.  Of course when he was hospitalized twice for SEVERE respiratory complications, he would need increased calories but he didn't get them.  So more weight loss. Then the one I had to stop was 600 calories.  Yes, you read that right! I could have lost it.  But I got it straightened out QUICKLY and moved on. 

He’s also starting to have some strange heart rates.  130 then 55, then 80 then 110 within seconds.  And he is having troubles regulating his temperatures.  95-100 within a few minutes of each other.  Bouncing.  (Autonomic Dysregulation?)

Meanwhile, he has been on TPN for almost a year and I have already found a few issues with low levels of trace elements … iron and carnitine.  But I asked about tests for the others.  Anyway, while in Boston, I took the chance to have a TPN doctor consult.  She said they do a baseline at the start of TPN and every 6 months unless needed sooner.  Manny has never had this done in a year on TPN.  So she ran the labs. 

Wednesday, October 3 we got the results back.  Iron is still “off”.  But most concerning is a “critically low” level of Selenium.  This could explain the strange heart symptoms as low levels can do that.  Selenium also helps build immune system so it’s no wonder he keeps getting sick easily. 

Finally, on Tuesday October 2 I noticed he was having reduction of urine output.  This cannot be accounted for … he is back to the right levels of fluids (only had the wacko low level for less than a week and that was 2 plus weeks ago).  He isn’t working extra, no fluid loss, etc.  So this shouldn’t be. 

On Monday, he was 12.8 kilos.  On Friday he was 13.7 on the same scale.  So he is “third spacing” again.  The fluid is going where it shouldn’t go. 

Friday, October 5:  So between all this, the pediatrician felt he needed to be in the hospital again.  The constellation of symptoms is concerning.   We were admitted about 5pm. 

While we were waiting for the room to be ready, he started with a runny nose.  He hasn’t really had one before and he kept saying, “My nose is … uh, WET”.  I think that makes MUCH more sense than “running”.  And that leads to post nasal drip.  Which leads to him coughing and trying not to aspirate. 

We were out of this hospital less than 3 weeks.  (And if you remember, we were discharged before we were really ready to go due to the Boston evaluation). 

He had a rough night … coughing a lot and just couldn’t get comfy.  He did a few bouts of choking.  But his 02 stayed high.  He is not struggling to breathe.  All the gunk is staying high and not low in his chest yet.  (Good news)

Doc ran a respiratory panel … we think it’s some kind of virus and we just caught it early.  Hopefully we can stay ahead of it unlike the last couple of times!  So we wait for the results. 

In the meantime, he gave Manny a bolus of fluids (250 in an hour versus the normal 50) and it took 16 hours, but he started to pee again.  Hopefully this will be the end of that. 

And he got labs.  They are mostly non interesting.  But you know how we get labs done every Monday?  So I know these labs off the top of my head.  Not to mention I have a table that goes back to every blood test he’s had since April. 

Well on Monday, his Neutrophils were low and his Lymphocytes were normal. 
Friday his Neutrophils are high and his Lymphocytes were low.  Meaning? Likely an infection (guess is viral) that just started.  So even the labs confirm what I am suspecting… some kind of virus that’s just started. 

Now you realize, the last several things that kicked his butt were run of the mill viruses, right?  The kids got Infuenza B back in May and had a couple days of Tylenol and fluids.  Manny ended up in the hospital with a blood transfusion.  And the one from August and the one from September were both “relatively simple” viruses. 

 

Noon  Saturday:  Well, that was interesting!  Doc must have called in the GI.  I expressed that I had not been happy with the current GI and might need to go back to the local one.  And I guess he decided for us.  Works for me. 

I'll be careful how I say this as I never know who reads this blog any more ... but this GI is one we have used in the past.  There were times I felt on the same page and times I felt on the complete opposite page as it comes to Manny's safety (thus our switch to the current one a year ago).  But at this point, I'd be happy to give this one another chance.  They can't do worse than the current one!  The recent mistakes alone warrant a change in care. 

I guess I'm saying is ... proceeding with great caution. 

What's the hesitation?  Every GI wants to get Manny immediately back on tube feeds.  (Ironically so do I.) So what's the rub?  They don't mind doing it at the risk of his pulmonary/respiratory status.  I say not so fast! 

And now comes the balance between what is worse?  The TPN risks?  Or the stroke like conditions of being fed?  How do I know? And how to convince the doctors of this.  Especially since not all of the doctors I deal with seem to LISTEN.  (ahem)

Part of me is relieved we will again have the local GI.  Afterall, I only saw the far away one ONE time in a year.  That's right!  This complex of a child and that's the only contact.  I will be more closely monitored here. 

But I'm also concerned about not being bullied.  I tend to go passive (against my gut sometimes) when I'm not sure I'm right.  When I KNOW I'm right, it's all good!  I'm a bulldog.  But in those gray times, I find it a difficult thing to navigate.  And where we're headed is definitely GRAY!!!  (sigh)

Like just now, the GI left saying he is going to start from scratch with his TPN.  Uh ... OK?  Why?  Who knows!  Could be a good thing.  Could be a horrible thing.  Who knows?  I mean, why not at least LOOK at the formula he's been on and adapt from there?  See, THAT'S the kind of strange thing that happens often in our world.  No clear cut "right" and "wrong".   I could give you a million examples. 

And the next strange decision I have to make is ... firing the previous GI.  I need to have them stop writing our TPN.  I don't believe in burning bridges (for the most part).  I could do it the easy way, "We just wanted to go with the local GI" and that would be that.  But I also know that is not fair to future patients.  There was some (recent especially) medical mistakes that were quite serious.  If I don't say SOMETHING they will never learn from this.  But what I have to point out could also get the person fired.  Some would say GOOD! She deserves it. But I would rather her learn from it.  So have to decide how to point this out with that intended outcome.  (again, sigh)

I will take the weekend to write the letter (with factual data) and send it likely on Monday. 

Oh, did I mention the GJ tube?  I think so.  I was placed Feb 2011.  Usually checked if not replaced at least every 6 months.  His was checked in October 2011.  And hasn't been since.  It started acting strangely.  Then it started with a strange smell.  I asked about it and was basically blown off.  When Boston did the EGD, they had to remove the GJ to use that hole to visualize the stomach and small bowel.  The GJ tube was coiled up and disinterating.  That alone could have caused some of his recent tummy pains. 

1pm:  Manny's cold symptoms have seemed to all but disappear!  Not sure how/why.  They left as quickly as they came.  No more runny nose, barely a cough.  Hmmm.  Wonder what that implies for the duration of our stay here?  Afterall, they gave a bolus of fluids for his "dehydration" and he is now peeing again.  Wonder if I could make a case for us getting out of here soon.  hmmm. 

2pm:  Doc was here.  I told him that he "fixed" Manny and that we're all better. :)  He said that if we stay fever free for the next 24 hours and no respiratory issues, we can go home tomorrow.  Now it's all up to Manny how long we stay here! 

How is Manny?  He's still himself.  Sitting in his wheelchair and playing.  He's a little low key and grumpy but mostly himself.  He's been enjoying his ipad and watching the same stinkin' episode/video of Little Einsteins over and over and over and over. 

Kaley is with me again ... what a gift she is!  I actually got to run to the cafeteria to get food.  I didn't do that the whole last time because she was sick and couldn't be with me in the hospital.  And I don't leave him alone.  Period.  So it's awesome to have her here!

Thanks for the continual prayers being raised up for Manny and our family!