Mary Elizabeth did great on Friday getting her gtube removed. It was a short procedure – as the procedure itself took less than 15 minutes, though because of prep time, the iv being put in etc. – she was in there from 7:45 until 8:20. Still not bad! Thing is- she was a sleepy head and slept from then until 11ish, So mommy and daddy spent a lot of time staring at her in recovery!!

When they were bringing her into recovery, we talked with the Doctor. He said her hole was REALLY big and stretched out. We knew this- as that was what caused the leaking… leading to soreness/redness – a horrible rash with some bleeding at times and thus pain of course. Yet he still prefferred that the hole would close and heal on it’s own, it would be better for her that way and typically 75% of the time the hole does close completely on it’s own. If it should not, it will close most of the way and the stitching would be minimal.

She has a HUGE bandage that seems "Super-glued" onto her belly and where the gtube WAS is still a bump- reason is- he had put some special stuff on the area with lots of gauze as to sort of keep it "plugged"  but without it being inside of the hole so the hole could still close. So it sticks out a little there, but it helps prevent leaking. The bandage SHOULDN’T come off, but we can’t emerge it in water or get it too wet. So sponge baths for 2 weeks.
In 2 weeks we go back and he’ll take the bandage off and check to see how it is doing. He’ll decide then if the bandage needs to be reapplied.

He will give it a couple months to fully close. So far we haven’t noticed any leaking and she’s been doing good with the bandage on. She is very happy and is often lifting her shirt to show everyone and anyone that she now has a bandage and no gtube. So very proud! She’s come a long way and deserves to be proud- we are too!

Seems unreal that we are done with that, we are praying that before long we will be thinking that about the trach too, but only time will tell.

Anyway for now we are enjoying the rest of the summer. Mary Elizabeth though is anxiously awaiting going to School, starting September 14th and also starting Dancing School around then as well!!! We all know that she’s a social little butterfly so a busy schedule is just up her ally!

Drew… well he is now officially, today, 21 MONTHS OLD!
He’s a very active little boy, so he sleeps REALLY well (Thank Goodness!!). He is a happy lil kid though and loves his big sister, they are a bit of trouble when together…. but fun nonetheless. Drew is talking up a storm and says just about everything. He loves to sing along to songs and he has a SERIOUS addiction to guitars. Not kidding there, do not take his toy guitars away from him!!! He definitely seems like a natural, but he does have those musical genes on both sides of the family so that might be why. Soon we’ll be starting to plan his 2nd birthday. Seems unreal!!!!

...until Mary Elizabeth gets her gtube taken out!!!!!

We go to Westchester bright and EARLY Friday morning, August 21st for her gtube removal!

On August 11th we went to her Dr. who handles her gtube and whatnot- and he reviewed the paperwork which said that she is OK to get her gtube out. He discussed with us that he would much prefer to remove it without doing it surgically and stitching it. He said 75% of patients with gtubes have the hole close and it heals on it’s own. We are praying she is one of them.

What he is going to do is take the tube out and cauterize the area as to help it to heal and close correctly. Then he will place a dressing over the area to help with leaking issues. This is a major dressing which will stretch over the belly and we should not let it be emerged in water as to help keep it on. So baths will have to be sponge baths with some hair washing in the sink or something like that for about 2 weeks. As for pools, she doesn’t go in deep ones anyway because of the trach and she has been loving sprinklers anyway which the Dr said is just fine.
The dr will also give us extra dressings in case it should come off or we need to cover it longer than 2 weeks. The leaking should subside as the hole closes, which again we are praying it does entirely on it’s own.

Keep her in your thoughts and prayers and join us in the joy of putting the feeding tube in our past!!!!
We will keep you posted as always