Friday, August 17, 2012

3rd Friday...

We've spent every Friday in August so far in the hospital.  It is truly amazing how quickly a month can pass when we're here.

Max is still in the PICU.  He is getting better, and is not sicker.  He is just being watched very closely because he's not been able to keep his food down at all without heavy sedation.

Yesterday, we tried to get him to eat at a rate of 10ml/hr.  That is such a measly dose of food, 10 ml is 2 teaspoons.  He was on that rate for 5 hours, when he brought every last drop of it back up, and then some.

We were back to square one, and had to start thinking of different options to get him eating again; as that is the main thing keeping us in the hospital.   Max had surgery two weeks ago due to a mechanical obstruction in his small intestine.  This means that it wasn't food or stool caught in his intestine, but the intestines themselves twisted causing the blockage.

Because Max has had so many surgeries on his intestines int he past couple of years, it's not uncommon for an ileus to form.  This is where a portion or all of the intestines stop working.   Basically, Max's guts are being mighty lazy right now.

Since we've tried for a week to feed him unsuccessfully, it was time to go to the next step of inserting a G/J-Tube where is G-tube has been the past 4 years.  It is different in that it goes through the stomach into the small intestine to feed him straight into the intestines rather than in the stomach.

We got all the doctors in the same room this morning as they talked it over with us.  We all thought it was the best chance for him to get past the ileus and backing up from his stomach.  He went down to Interventional Radiology for a second time this week to have it placed since they have to watch through moving xray where it is being placed since it has to go past the stomach and into the intestines.

The whole procedure took about 10 minutes, and Steve and I stayed with him to hold his arms and legs still while the doctor got the new tube in him.  He's now back in his room, singing some opera to his Monster Mrax, and eating with his new tubie.  It is feeding him into his small intestine, and venting through his belly at the same time.

Chances are, this is going to be a temporary need, and we can get back to the g-tube soon.  The G-tube is preferable to the G/J, because Max can not have the blended diet with the G/J, and has to eat around the clock now.  Hopefully it will be something that will help him heal quickly, and we can start getting his medicine in him again, and get off all of the IV medicines!

He's still on the sugary water "formula" now, but we will soon be changing him over to a new formula to kick start his stomach and digestion again.

That's the word from the PICU at Children's Colorado.  It's been a very tiring few days, and definitely wishing we were home already, but happy that we're ending this Friday a little closer to getting there with the new way to feed him.

(Max singing O Sole Mio.)


Junior said...

sure hope the gj tube helps and gets things to moving again.

Junior gets his blended diet through his J tube and we haven't had issues. We do have to be very careful to strain everything a couple times before putting it in his feeding bag.

lots of hugs, prayers, and get well wishes.

Elizabeth said...

Sigh. I can't believe how much you're going through and little (big) Max. It sounds like things are moving forward, and I'm keeping my fingers crossed that it continues to do so. Stay strong -- or not, depending on what you need!

Deana said...

Heidi, we're hoping he won't need it for long. Really just trying to jump start his digestion again. But, it's really taking it's time this time around.

Elizabeth,it seems now hat every hospital stay turns into a two week or more ordeal. Sometimes I think we're preconditioned for it, and fall right back into the way it is. But, really, it's exhausting and frightening every time. I'm strong for him...and not when I don't need to be. Thank goodness for long hot showers at home every couple of days...and big poodles who will let you give you a furry shoulder to cry on. :)