Feb 16, 2011

What an eventful day!

Since I have so much time to think these days, yesterday I spent some time thinking about what is GOOD about being in a hospital.  And the list is actually quite long. 

I mean I COULD focus on the couch bed, the interruped sleep every hour or so, the sometimes grumpy nurses or the fact that they forget it's their day but our night, or that between the stress/fact I'll be 42 in 2 weeks/hospital lighting ... that I scare myself to look in the morror. 

Here are some of the good things.

1) At home and the baby "freaks out" medically speaking, *I* have to make the judgment call about what to do, how to do it, when, how much, etc.  Like for the weeks leading up to it, my gut said something really wrong but how do I prove it, who do I ask, etc.  So I ask Dan about such things and he basically says, "Good luck with that."  (Not those words).  But he says he doesn't have enough information to make that call.  The problem is ... NEITHER DO I.  And yet I still have to make the call.  Am I doing enough? All that I can?

So yesterday when he was having a horrible retching episode, I got up and did my usual thing with him.  The nurse was in the room and I asked her is there a different/better way to be doing what I'm doing?  I figure ... utilize my resources while there.  She said no.  I felt reassured that I was doing all I could. 

2) Housekeeping comes by once a day and empties the trash, does a basic clean of the room/bathroom, mops the floor, etc.  I so need that service at home.

3) The tech comes in and does the vitals which have been very important as he keeps running fever and if we can catch it before it goes too high, it stays pretty low.  Plus, a tech is the person who helped bathe him yesterday.  Now that's a helpful service. 

4) Daily, all the doctors come by to see us.  Normally I'd be driving all over town to get to these various appointments just to sit and wait for them.  But instead .. I sit in my room, he's all comfy and they come to ME.  Every day they monitor him and adjust daily what he needs.  Things moved along in his case very rapidly because we were here and not outpatient. 


Now about our night.  We slept.  Uneventful (pretty much) and the coolest part?  He didn't desat even one time.  The alarm never rang even one time.  He teetered a few times but mostly slept around 96%!!  That's amazing.

The morning was quite uneventful and were told the surgery was postponed.until tomorrow.  Then at
10:45, they came for him and said NOW.  I was wearing my pink fuzzy socks and pink slippers.  Told we would be gone about an hour and off we went. 

It wasn't until I was down there that I realized that i hadn't eaten and didnt have money.  We were in a part of the hospital that had no cell access so no way to let anyone know.  Very frustrating. 

By 11:30 the message came to us that the person in line before us was having troubles with sedation and they would be at least another 2 hours.  (And then if they got the person back or not, they would likely be "spent".) So they called for a new anesthesia team.  Said they would be there by 12:30.  By 12:15, Manny fell asleep so I was able to sneak away and at least let Dan know what was happening by a landline phone.

Taking a nap before the procedure (Looks like he has already HAD sedation! LOL)

Team came in at 12:45 but the Doctor was a general guy, not a peds guy so he had a second person with him who is peds but not a doctor.  (I just prayed, knowing he was in God's hands.)   

1:05 he was taken back and I was led to the waiting room.  No cell service there either but I knew just down the hallway was the main hospital entrance and surely I could get some there.  So I ran out there and did a whole bunch of texts, posts to FB, calls to people, etc.  and thought they all went through ... but no.  Later I found they all failed. 

2pm he was in recovery and they said he did great, no troubles. But I am SOOOO glad we went with sedation!  It should have been a 5 minute or so procedure which turned out to be 45 minutes.  Can you imagine how terrified he would have been?  Ugh.  God protected him from that.  HE knew!

In recovery, his tongue kept slipping back and obstructing his airway so they had him at the most ridiculous angles to keep it right. 

2:45 back to the room.  I still hadn't had anything to eat or drink all day.  But by now, he was SUPER flushed.  VERY bright red like he had a huge fever.  He felt warm too but temp showed barely.  Heart was in 190's so something was stressing him out.  Finally gave him tylenol and started IV fluids again. 

Dr. Cartaya came to check on him and he told me what the whole deal had been earlier in the day.  The xray from last night showed "likely pneumonia" in his lungs and they were freaked out.  Dr. C was fine.  They argued and that's why the surgery was "off" until it was NOW! 

GI came by and told me that if all goes well with feeding, she will clear him for discharge tomorrow!  Cartaya will discharge him unless this develops into full pneumonia.  So we're hoping to go home tomorrow! 

During all that time, my friends Bob and Ann Long came by with the kids.  They brought their homework and we had snacks.  Then they brought us pizza and we had a little pizza party and movie!  The baby was so peaceful, acting like everything was back to normal.

After they left at 7:15, he got cranky. 

Now about the procedure itself.  They went in through his gtube hole and put a wire around down through to the next part of his intestines then inserted the new tube.  The first one was 14 this one was 16 so a bit bigger.

MOST times, they put all the food in the Jtube and meds in the Gtube and they vent with the Gtube.  But the doctor was VERY specific that she wanted even his meds to go into the Jtube.  This must be highly unusual since they nurses kept asking for clarification.  She insisted that at the level of gastroparesis that he had, the meds would just sit there and could cause major troubles.  (That means: Because his stomach has stopped emptying, even meds wouldn't go out.)  Even the night nurse was in quite shock as they ALWAYS put meds in the gtube.  So that told me something.

This is "before". This is his gtube where all goes in and out. 

This is the "after" picture.  The white one is going in the Jtube with formula, the other one is coming out of his Gtube with stomach contents (which today include blood due to the procedure)


  1. Hi Beth -I want to share that I have lived with gastroparesis for 12 years now. Here is a website with some info www.g-pact.org. At the time of diagnosis I was emptying at a five hour rate and vomiting constantly that led to a thirty pound weight loss. It can be caused by nerve damage or muscular damage or no known cause ideopathic as in my case. There are motility meds but not sure for children. There is also an experimental stomach pacemaker. It will help him so much to bypass the stomach with the jtube. I remember the dr telling me it's like a very large stopped up bathtub with no where to go but up. If I drank or ate I could not bend over for up it would all come. I had really bad reflux/GERD for six months before they figured this out with the stomach emptying test of those radioactive isotope eggs to eat. I cried the whole time of that test too. Praying for you and Manny for answers and relief. Shirley

  2. Hoping this works. We will be doing this soon. So it was a surgery? I dont know anything because I wasnt there when they told my husband and he listens like a man, lol. Praying for complete healing. Hugs my friend.

    Be blessed