Slowish Sunday

Manny is on continuous feeds with a farrell bag.  This is a special venting system.  Pretty cool actually.  Normally the milk goes from this pump through a tube to his tummy.  This is a second tube with a bag in between the milk supply and him.  The point of it is if the tummy is too full, needs to release gas/pressure or he needs to reflux, it goes directly into this bag instead of staying in his tummy or coming up his throat.  It was really neat because about 10 seconds after it was hooked up, it was already being used which indicated he was indeed having too much pressure.  So good call GI! 

All was well until about 9pm.  They had told me to keep an eye on the tubing and bag. Not to let it get to the bag.  I noticed that the tubing was filling up higher every time the pump would dispense milk.  I watched it climb with every drop.  And then it got to the bag so they stopped the feeds.  The thought was to not put more milk in and just let what was in his tummy already go out.  Wait. Wait. Wait.  Nothing.  It didn't budge.  I used the clip on there (unclipped of course) and slid it to the milk level so we would have a measuring line to see if it was working. 

3 hours went by.  Since we stopped feeds, not one drop has gone down. We hoped time would help. It's not. They're calling the doc about what to do now. He was saying "owie" and touching his belly. Fell asleep about 12:05. 

At this point I wrote on my Facebook page for people to pray.  And they did.  Many leaving comments on my wall to know they were there with me.  (What a huge lifesaver!)
So we held feeds until about 1am, started them back up at a slower rate and he was tolerating them. So the prayers have worked. Thanks! at 6am he woke up screaming (like he was doing at home) but this time he was yelling, "OWIE!" over and over. I would reposition him and eventually I could find a spot where it didn't hurt. Took 45 minutes but he's finally back asleep.
 
He's also dehyrated (lips very cracked) and no diapers for a while. Meanwhile, he's also not pooping. (We know the barium thing can cause problems so they've ordered something to help him.) So ... another rough night for the sweetie pie. Wondering when he will get this switched over to the jgtube. And so very thankful for the farrell bag through the night ... it helped us know there was a problem and could give immediate relief for him. (Otherwise, he would have just continued being fed and it would have caused even more problems.)

But we have some great news too.  No real fever through the night.  Highest was 100.5 and most of the time it was under 99.  That was without fever reducing meds.  So we may be over the hump. 

He's having some congestion from somewhere.  But it's not in his lungs which is GREAT news.  Seems to be a mucus mess that gets caught in his throat.  Can't go up or down.  So we have to suction often.  Wonder what's causing this?  Anyone venture a guess?  Allergies? Milk intolerance?  Other? 

11am ... pulmonology on call guy came in again.  He was in SHOCK at how great Manny looked compared to yesterday.  He's sitting up, talking, rosy cheeked and all alert.  Yesterday, not so much.  One of the main things that changed was he is on a steady level of 02 at 1/2 liter.  When he sleeps, he goes up a bit for support.  But it's made a HUGE difference.  He was trying to explain that some kids with chronic lung conditions/weakness sometimes just need the oxygen.  The machines might not show it but they know for sure when they put the kid on and voila they perk up. 

12pm Dr. Cuenca (GI team) came in to check.  I obviously shared the concerns about the stomach completely stopping in the middle of the night and the pain this morning.  She gave me some tips on what to do (such as stopping the feeds, etc ... all the things we did last night that evantually worked).  She said she has ordered the tubing for the jg-surgery.  They decided not to scope at this time, no real need for it she feels.  Fine with me.  We can always do it later if we need it.  She feels the jgtube will fix his gi problems.  She said Dr. Cartaya will need to clear him for surgery though since he is the overall consultant.  She ordered a few meds for his constipation (likely due to the barium) problem. 

I also addressed with her my concern about the lack of wet diapers.  He seems sufficiently hydrated (can cry, skin pops back nicely, lots of saliva, etc.)  But he's not peeing.  In fact, from 6pm diaper change until 2pm, he had less than one fluid ounce of pee.  Not enough output yesterday either.  So they bagged him.  They put this very sticky bag around his pee and then you put the diaper back on.  Eventually he pees and it's been collected.  (Saves from having to cath him.)  They're send it out for a specific gravity test. 

12:45 the kids and Dan showed up.  He squealed!!!  He was just about asleep and then he was WIDE awake.  They are so good for him.  They were happy to see him looking a lot better.  (The other day he was feverish and not getting oxygen.)  But he is his regular, happy self.  It was funny watching people go down the hallway looking in to see the gang. 

About 1, some more friends stopped by.  Bob and Ann Long.  (Manny lit up for them as well ... wish I would have had the video camera on.)  This is the lady who is providing meals for my family while I'm here.  She is also doing periodic grocery runs for them.  And today she brought me foods that I was CRAVING.  The list is indeed strange.  But don't judge me!  I'm a sleep deprived Mama who has been playing the role of Mother bear and I need my strength.   I won't tell the whole list but Spicy Doritos and Pickles are on the list.  (NO, not pregnant, just craving).  She also brought me her homemade lasagna and some soup that was still hot.  Gotta love friends like that.  They preferred not to have their pics taken so no pics of them.  You'll just have to use your imagination. 

They were all in the room when the Respiratory therapist, the nurse and the Doctor also all showed up.  So at one point, we had 13 people in this TINY room.  And you have to imagine it, the bed takes up most of the room.  Then the couch/bed takes up a lot.  Then he has TONS of equipment, chairs, wheelchair, etc.  So we are tight on space already.  To someone else this must have looked like sheer madness.  But to me, I was happy to have "My life" even if only for an hour. 

OK ... so Dr. Cartaya was the doc who came in.  I shared with him the night and morning episode.  We think GI issues will take care of it.  He said the EKG came back "mostly normal" ... there was some right atrial issues so he ordered another CMP, CRP and BM Peptide.  Those tests will tell us more.  Unfortunately, they cannot draw the labs today.  Why? He is out of visible veins.  The IV team will be back tomorrow and get it.  And the labs can wait anyway since he is now considered stable. 

I asked when he thought he would clear Manny for surgery since GI was deferring to him for the timing.  He said no way tomorrow.  MAYBE Tuesday.  Then we will have to have successful feeds (meaning no reflux, no retching, no stopping, etc.) for at least 24 hours before we can start talking about going home.  And of course his respiratory issues have to clear up.  His heart has to behave as well.  So if you're reading what I'm writing betwen the lines, I think I might as well get real comfy here.  I do the math and the earliest we could leave is Thursday. 

Already working on how to deal with the next challenge ... they want to start weining him off of his oxygen tomorrow morning.  That's fine if he can handle it.  I'm all for him being on just room air!  My concern is if he is not, what's the criteria for letting them know he needs it back on?  See his sats stay up during the day with it off, it's just straining his heart and he looks very fatigued.  Already working on some thoughts on how to deal with that. 

And I know he needs it at night when sleeping right now too.  How do I know?  Because he was supposed to be on 1/2 liter.  He fell asleep and he started desatting.  When the nurse went to check, it was actually at a full liter already and he was hitting the 70's.  I just don't want to fight for oxygen again.  Praying I will finally have a way to get them to understand. 

2pm, they did the calculations and realized that he was not getting enough fluids (I had mentioned my concern about it ... actually, I did the math and know he needs 42.6 per hour and he's getting 35.  Plus they stop it periodically for things so he's quite under.)  Then they realized input didn't match output either.  So they did a urinalysis.  It came back showing he's ...

Dehydrated.  That's right. 
But it also showed proteins (not sure the number as the nurse isn't allowed to give the numbers) and some Red blood cells (again, not sure of the amount).  So they're a bit concerned about kidney function too. 

They hung 200 cc's of liquid (for perspective, 8 ounces is 250 cc's).  They pushed those fluids over 2 hours.  Then they upped his milk to 40 and started his IV fluids back at 30 per hour.  They want to OVER hydrate him.  Well... that started at 3pm and it's almost 7 now and he still hasn't peed.  So it seems not only is his stomach VERY slow, so are his kidneys/bladder. 

And the great news is that the meds for constipation also worked so that should make his tummy feel a lot better.  BUT about 5pm, he started retching again.  Milder than before but still there. 

So ... just trying waves around here.  So many ups and downs.  Trying to think of it as the waves of the ocean.  And I'm just trying to surf!