Oct 9, 2012

Bounced Back

Seems I'm always trying to play catch up on this blog.  Life is at an incredibly fast pace. (Duh). 

So Friday Oct 5) Manny ended up in the hospital with "dehydration" and not urinating.  While here, we noticed a runny nose.  Tested positive for Rhinovirus.  (One of the more than 200 virus strains that cause the "common cold".)  Saturday, did great (no fever, no respiratory issues) so Sunday we were discharged. 

Sunday night he did NOT do well.  He had the roughest time.  Normally he breathes too fast and too hard (hyperventilation).  But this time, his breathing was sooo shallow that I couldn't tell he was breathing.  I couldn't SEE his chest rise and fall.  I put my hands on him and I couldn't FEEL it.  I got out the stethescope and and I couldn't HEAR him breathe.  I knew he was as his heart was still beating, THAT I could hear.  And during these moments, he would desat.  I put oxygen on, Max, and he still couldn't stay above 90.  It was a long, rough night. 

Monday 8am I wrote a summary with questions and faxed it to the pulmo.  At 9 (when they open) I called to make sure they gave the note to him.  11, they call to say he's still at the hospital and will be in the office around 1pm.  3pm I try several times to get through and I can't.  4 I try again and finally get through to a voicemail.  4:30 the office manager calls and asks for me to come in and can we be there by 5?  Well, it's about 40 minutes away, not counting getting ready to go.  Thankfully I am quick. 

I arrive at 5:05 and head to the room.  There are still about 12 people in the waiting room waiting to be seen! (Not to count the ones in the back in rooms already.) 

Why so crazy?  Two things.  Their computer system went down (which explains why I couldn't get through even to the voicemail).  And they say this is the worst season for sickness they've ever seen and this is the START of the season.  They are just slammed!  Completely overwhelmed. 

So Manny and I sat in the back corner, trying to sit where no one could cough on him.  He sits in his contained wheelchair playing with his own toys.  I tried to touch nothing and I sanitized often!

Finally got back to the room and was seen about 6:15.  We had a very frank, honest discussion about where we stood.  He completely "gets" where we are and also understands that I am very realistic but hopeful.  We were clearly on the same page about where we are and where this is (likely) headed. 

He left the choice up to me about going to the hospital or staying home to "see".  Sometimes I hate being the mom and having to make such tough decisions. 

I got to the van and called the primary.  Not to make the decision for me but to help me think it through.  Afterall, she likely had more than 2 hours of sleep like I had.  And sure enough, she did.  She asked me which I could live with better.  If I went in and he had a great night and it was overkill to be there, I would likely feel embarassed, etc.  But if I don't go in and he gets sicker and it takes a long time to recover would I kick myself for not going in sooner.  Well, presented in that light, the choice became painfully clear. 

I called Doc. 
Me: Hey, This is Beth, Manny's Mom.
Doc: You need a room?
Me: Yes, that's the quick version. 
Doc:  What happened?
Me: Respiratory. Want me to come to admitting or ER?
Doc: Admitting, I'll have it ready by the time you get here.

We just got Bounced Back to the hospital. 

Apparently admitting is closed at 7pm and you have to go to admitting near the ER.  (Across the hospital.)  They were slammed in the ER!  We stood in front of the admitting person FOREVER.  She was doing paperwork.  Never even looked up.  She walked away.  I finally asked the ER person where I should be and he told me I was in the right place. He was visibly upset at the lady for making me stand there so long and then walk away.  Eventually she came back and did the same time.  And FINALLY a lady showed up and asked, "How can I help you?"  I told her we were being readmitted.  Got the name, gave us paperwork ... took like 3 minutes.  That other lady? Never did look up at us or anything.  Ugh ugh. 

Got to the room and everyone got to work on the feverish race that is admitting.  Oh, and on Sunday he weighed 13.4 kilos.  He is now 13.1  That was with him on extra fluids, extra calories and extra fats.  :( 

From 10-3 Uneventful and I was wondering if I made the right call to be here. He was satting 100 on room air and no distress. Then he started doing what he did Sunday night at home. The RT was just here and she said it sounds junky low now. Sigh. Here we go again.  They set up oxygen and suctioned him. 

4-8am was rough. Breathing erratic and more coughing. Gave Robinul to dry secretions (they are that bad, yes, I know this is controversial). 8am had to call the nurse who called RT to come NOW as he couldn't clear his airway. Desatting, etc. even with suctioning he was struggling. I finally got enough of it that he could breathe, caught his breath and then was able to cough some up. By the time the RT arrived (less than 5 minutes) we were breathing calmly again like nothing happened. They knew it was bad as I have NEVER called for them to come stat.

8am  Now he is sitting up playing, breathing fine on room air. Every now and then his secretions get the best of him and he desats but is able to clear it by coughing and suctioning. I'm sure the pulmo will be by soon and change all his meds/treatments up. He could still teeter either way ... recover easily/quickly or this could go south quickly (like he did the last two times).

There is MORE going on too.  Starting last week, I noticed a strange constellation of symptoms.  I have been researching and have been running my own differential diagnosis.  Let's just say I hope I'm wrong on this one!  But even still, I ran it by the CMD expert in California and she (unfortunately) feels I might be right.  I'm not quite ready to put those thoughts out in public but I will eventually, especially if things prove to be as I think they are. 

Oh, some exciting news.  Last week, I wrote the GI in Boston for the results.  This morning I got an email that said the results and recommendations have been given to the referring doctor.  Now I'm not sure if that means my Primary or Shands (as both were crucial in sending) so I should know the results soon.  I wrote the primary and told her that if she didn't get them, then Shands has them and could she get them to me ASAP?  Holding my breath. 

I THINK they will say that there were some things "off" but that they would like to try to initiate at least a small amount of feeds.  Even a few CC's per hour can sometimes help save the liver.  So it might be worth it.  At the same time, will it compromise the rest of him (like respiratory, etc.) to do it?  So we might be forced with another complicated decision of what is best for the baby, not based solely on body parts.  Like maybe his GI tract can tolerate the feeds and it helps the liver but it worsens the respiratory ... then which system do I pick? 

Today's agenda ... get ahead of this respiratory infection.  Get the GI to write a TPN that includes what he needs.  Get Boston results. 

9:30  Pulmo here.  Ordering "the usual".  Round the clock choo-choo train (he HATES it but it's effective), the regular meds, a couple of new ones.  And he is going to do a low level sleep study (the only one that is available in this hospital for some reason).  It will not give nearly the same info at a traditional one he says but maybe it will give him enough to see what we need to see.  And then eventually, we can get the whole study done while out of here.  Liking most of the plan so far.

He did start him on two medications that are very controversial and my gut isn't trained on this yet.  I know I'm on "high alert" for problems.  Watching carefully.  He's on two for drying up his secretions.  One is robinul which will be given every 8 hours while sick.  This SHOULD help reduce some of the post nasal drip and the oral secretions he has (he can't manage them at all right now).  And then a scopolamine patch which is put on once a day to help maintain a steady maintenance of lowering the secretions.  He's never been on either of these so it will be interesting to see if they work, if he's allergic, if he has reactions to them, if they don't over dry him out and make a mucus plug. 

I talked to him about 4:30-5:30 being the key time for him for strange events.  That's when his breathing goes too shallow, his blood pressure bottoms out, he desats, etc.  He said that's likely when he is hitting the deepest REM and we are basically paralyzed in our neuromuscular.    Interesting.

10:15  Fever.  Not high but it's there.  (No, not the meds ... they haven't been given yet).  Could be just from the rhinovirus ... it can cause a low grade fever.  Could also be the start of pneumonia.   

12  What a difference a doctor who listens makes!!  :)

Manny's TPN is straightened out.  He will be receiving the carnitine that he needs.  They are working on a version of selenium for him.  (Not as easy ast that sounds but at least they are trying.)  The doctor looked at the labs that showed the iron issues as well and said that needs to be addressed. She fixed the lipid issue (the home one was too low, the recent one by her partner was too high).  This one is Just right.  (Why did that conjure up Baby Bear images? LOL)   And she got to working on getting the results from Boston for us!  Yay!

In the meantime, she wants to start him on 5 ccs an hour for 4 hours through his gtube.  We will have half strength of an elemental formula.  And he will be vented simultaneously so if it backs up, it will back out of him into the bag and not up his throat.  And I had it put in the orders that if he doesn't tolerate it, we will stop the experiment. 

Why am I allowing this?  IF he can tolerate it, it could help save his liver.  It can help stabilize his sugars.  And it can provide options for alternate nutrition. 

If he can't tolerate it, we will be in the hospital environment.  Supervised.  With witnesses and not just "my" word for it. 

To me, Win/Win. 

I have my feeling how this will turn out.  I'll let you know if I was right.

I'm feeling very positive about the new direction.

12:30, a dear friend Arlene brought me lunch!  What a sweetie pie.  She also took the time to hug on Manny.  He really likes her a lot you can tell.  She just gives off a special warmth.  Gotta love friends like that. 

2:30  The feeding experiment has begun.  It's 5 cc's an hour.  Do you know how little that is?  1 Teaspoon.  That's right.  Only ONE teaspoon of liquid will go into his stomach in the next hour.  He SHOULD be able to handle that.  It should cause NO troubles.  We don't know at what point it will.  In hour two? Three? Tomorrow?  But at some point, it likely will.  Why?  His stomach doesn't empty.  Now, he is hooked up to a venting bag so it should back up into there instead. 

As of the start of this experiment, he is not sweating, no retching, heart rate around 125-130.  Sats 100 and no stomach output.  Let's see how long it is until that changes. 

Was reading on Facebook and saw this quote from a friend ...
"When did I start expecting successful Christian living to be smooth sailing instead of stepping out of the boat in the middle of a storm?

When did I start thinking that good Christian living looked more like a holiday than deployment?

 When did I start thinking Christianity was about putting on accessories instead of putting on armor?

Life’s not hard because you’re doing anything wrong: Life is a battle. Put on your armor."                                              ~ Ann Voskamp

Good food for thought.  I know I feel like I'm out of the boat, been deployed and sometimes wonder if my armor is where it needs to be.  So thanks for the reminder. 

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