Feb 11, 2011

Friday update

We just finished doing his Upper GI.  The Doctor of radiology is the one who does the test so he was there and walked me through the whole thing.  His Upper GI was completely normal. Fundo looks great. He retched during the test and yet NOTHING came up. All good signs. The  report is not back yet but I know the scoop.

Not screaming, just flirting

Tests from yesterday are back and it's not good news.

The delayed emptying is "Markedly delayed" ... half is supposed to be gone in an hour and his was less than 25% so they will start him on meds today. That part is no big deal ... and I know we can always do the jgtube if this doesn't work so no biggie probably.  One step at a time. 

The CK blood test came back high. It was high all over showing general muscle wasting. But the part that was specifically heart related was quite elevated. Enough to call in the Cardio specialist.

Pulmonary issues are getting worse fast too ... don't know if it's a secondary bug or a symptom. (Like with congestive heart failure you can have similar symptoms he is having.)

So I sit and wait for the next specialists to come in.

12pm ... Pulmonologist came in.  This is the one we see once a month in his office and have since May.  He knows our case. 
Doc said: Do you know why we were consulted since he is here for GI issues?
Me: He didn't come IN with Pulmonary things, he has them now.  At home I have x,y and z meds.  Here we have had nothing.  Also, I need orders written up for his oxygen.  He was down in the 70's last night.
Doc: (standing up, red in the face and clearly angry). I'll take care of it. 

With that, he walked out of the room and haven't seen him since.  But I have seen his work.  Magically, the CPT vest showed up so his fluids don't settle in his lungs.  His nebulizer treatments have been upped from once a day to every 4 hours and new meds added.  He had a nasal swab to try to detect which bug is happening.  (Pretty obvious he has something as his fever is climbing.)  He has written orders for oxygen that he will remain over 92. Period.  Trust me, he would not be happy with nurses if I call in the middle of the night saying we're still not getting 02 tonight.  (And trust me, I'm just sleep deprived enough to do just that.) 

I have no clue if he ordered anything else but that's a noticeable change immediately! 

Anyway, his Nurse Practitioner stayed in the room with me as he went out to write up orders.  She did the physical exam and said it still didn't sound in his lungs.  (Good news that we probably caught it early enough.) 

Then we had visitors.  Silly me forgot to get pictures.  I was too busy eating the fruit they brought to take a picture.  Thanks Rich and Elsa for the company, fruit, support and prayers!  It sure lit Manny up to see you.  He perked right up during your visit and is still quite happy. 

A little after that, the whole gang of  kids and hubby showed up.  Again, I forgot to take pictures except one with Dan and Manny.  But the whole crew was here.  I was distracted with them ... noticing they are mismatched, girls' hair is a mess, two were wearing pj shirts, etc.  And they acted like they hadn't been fed in a week.  (Dan fed them a late breakfast and then they headed here so clearly not starving.)  I let them have a bite of my fruit and a piece each of the amazing fried chicken Rich and Elsa brought.  I also let everyone have one of the donuts they brought.  (You guys made my kids' day!) 

Kaley brought some of his favorite toys

Before we knew it, time to go.  (They were headed to the Florida State Fair.)  Manny cried when they left.  Not for long but clearly he misses them.  

And just because he didn't have enough "weirdness" going on, a bump just appeared on his face. It's gotten bigger since I took this picture.  Anyone want to venture a guess of what it is?  UPDATE:  2 hours after I wrote that, it was gone and a second appeared in near the same spot.  (Not in a place where his face touches the sheets or anything.)

Below is a cut and past about his newly diagnosed condition called : Delayed Gastric Emptying (Gastroparesis)

Gastroparesis, also called delayed, late or disordered gastric emptying, is a gastrointestinal disorder caused by delayed digestion and movement of food from the stomach to the small bowel.

Gastroparesis occurs when the vagus nerve - the nerve in the stomach that controls the production of stomach acid and the movement of food through the digestive tract - becomes damaged.

Symptoms of Gastroparesis: Symptoms of delayed gastric emptying may range from mild to severe and include: slow digestion, heartburn, vomiting, poor appetite, stomach spasms, bloating, weakness, weight loss, sweating, dizziness, nausea, sleepiness, extreme fatigue.

(Manny has each of those symptoms except weight loss)


  1. I'm praying for you and Manny, Beth. I wish I could help in some way.


  2. Aw poor sweet boy. How are you hanging in? I know some of what you are feeling. We had our stay Christmas day to the new year. My son too has delayed gastric emptying. Did they put Manny on arthamiason. Totally misspelled that.Thats what my wee man is on. I am going to ask dr if we can take him off since we are not bolas feeding but continuous. Noah has ulcers all thru his stomach and I am worried it is due to all his meds. I will pray for your sweet boy.

    Be blessed