Gastro Update

 Well it's been a very busy last week.  In my last post I talked about Dylan's Cardiology appointment and his new medicine regimen.  We were supposed to go back to his Cardiologist last Thursday to see how the meds were helping and how he was doing.  I didn't want to go to that appointment.... I just had a feeling she was going to want to keep him.......... and I was right.  She wasn't happy that Dylan's heart rate was still on the high end, and she wasn't happy about the fact that I told her nothing much had changed... so she decided to admit him for at least overnight so that she could get a stomach ultrasound and have GI come see him and run some blood tests and stuff...... so I agreed ....... well...... I didn't really have a choice, her words were " I am no longer happy or comfortable with not having him here... I need to admit him to get the tests done that I want done and to have the doctors that i want to see him, see him..... so... he's staying with me"  :-(    I knew it was coming... I was still sad, but I was prepared for it.  So Thursday afternoon we were admitted, it was only supposed to be overnight, but we ended up having to stay until Saturday afternoon.  While we were there, they ran numerous blood work, they had GI docs come see him, and they even had the Neurologists come see him..... they were concerned about him sleeping so much and being very irritable...... They did a head ultrasound, and did some metabolic lab work.  The ultrasound came back ok, and the only thing that was off on his blood work was that his lactic acid was a little bit elevated, but they concluded that his head is Ok........ they suggested doing an MRI of his brain at some point, but Dylan's Cardiologist quickly shot that down since it doesnt seem like there is anything wrong with his brain and it would mean he would have to be put under anesthesia.  While we were there we were finally able to get the stool samples that I've been trying to get for the last month.  Dylan's stools are so loose that they just soak into the diaper so I was having a hard time getting a sample, and the other problem was that it had to be at the lab an hour after it was collected.... so that just didn't happen.  While he was admitted we were able to get the samples they needed to run their tests and we had the GI appointment today to go over everything.

All of the tests for infection came back negative which is great.  The only tests that didn't come back yet, were the test for the H Pylori Bacteria, and also the Protein part of the Malabsorption test.  The doctor said she is pretty sure it's not Malabsorption because of the fact that Dylan is growing and gaining weight like he should. The test for blood in his stools came back positive while he was in the hospital..... and it just so happened that Dylan had a poopy diaper while we were in the office waiting for the doctor.... So i decided to wait to change him until the doctor came in so that she could see what his stools look like.   When she came in, I changed his diaper and she checked it for blood again and it came back " very positive".  She said the most common reason for infants to have blood in their stools is due to an allergy.  Apparently Dylan has a VERY sensitive stomach because he was already on one THE gentlest formulas because he did have visible blood in his stools on regular formula.  There is only one other formula that they could try which is called Neocate.  We've decided to try the Neocate for two weeks and then go back to the GI doctor to check for blood in his stools again.  IF this doesn't work and it's not an allergy then they will have to do further testing.   Dylan has his next heart surgery in two weeks, so the plan is to change his formula now for the next two weeks, test for the blood in two weeks.... let him have his surgery and recover from his surgery.... once he's home if he's still having the loose stools and the blood, then they will have to do a colonoscopy to check for other things.   I'm really hoping that it's just an allergy and that the formula change will help him.  He's been through so much already, he doesn't need to have another testing procedure done.

We also found out last night at our monthly heart group meeting that Dylan's surgery has been pushed back by a day.... so he will have his Glenn surgery on September 2nd, instead of the 1st.   Which I'm happy about because September 2nd is my Grandma's birthday..... She'll take good care of him <3

Our big boy weighed in today at 12lbs 8oz today.  He's getting SO big! <3