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Well ME has been gtube free for 2 1/2 weeks now and is doing well. I wouldn’t say everything went totally smooth though….

After about a week and a half we noticed a lot of leaking through her bandage. And then she had a bit of pain along with it. We called the dr and he was out on vacation but they instructed us to remove the bandage and do our best to keep it clean/dry/covered. We did that, and there were quite a few days of her having pain here and there. We did our best to make her comfortable and were praying that it wouldn’t become infected. We did a good job with it though and were able to make it a little better. It also began leaking a bit less so that helped.

Yesterday we went for our follow up and as we knew, the hole had closed quite a bit considering the hole had been pretty larged (it was really stretched out). So it is good that things are moving in that direction. He said we did a good job bandaging it, but he had better special stuff that would last longer and keep it tighter. He also suggested we use vaseline on the area. He said the area is pretty sore so when the stomach acids leak out it feels like it’s burning, which was the pain she feels. The vaseline will help it and then the bandaging will help keep leaking minimal. So the process is- we put the vaseline on, then pack gauze over it and tightly put this bandage tape over top of it called "Elastoplast". The whole idea is to put some pressure on the area to keep everything in. He gave us some extra stuff so we can do it ourselves should it leak or come off, but it definitely lasts pretty well.

He will see her again in 2 weeks to follow up, he said the process can take a couple months but it gets better and better as the hole closes. Since it is closing, it should close most of the way at the very least, if anything there may be a small opening (like a pin hole) -should this happen he’ll put one small stitch in quickly and she’ll be in and out with no recoop.

So we’ll just ride this out. I’m glad to report though she hasn’t had any more pain in a few days so I think we’re on the right track!

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 🙂

The
pediatrician has given us the GO AHEAD to get the gtube removed and wrote a note for us to bring. Her dr appt
with the pediatric surgeon is August 11^th. From there, we will give
him the note from her pediatrician and discuss how to go about it.

Praise God!!! As mentioned time and time again, this area has always caused her problems/pain, it leaks
and the area is always pretty red and sore. This is a great step forward for
her!!!! We are soooo ready to say goodbye to that gtube!

…… also, in other news – her MRI/Cat Scan appt was changed from Aug 19th to Aug 4th. So keep that in prayer 🙂 Thanks, as always!

It’s been 6 or so weeks since Mary Elizabeth’s last sclerotherapy/injection surgery. So today we had a follow up appointment with her surgeon- Dr. B.

Last time we had a follow up appointment it went faster than expected, so I guess I was fooling myself that it would go fast again (even though it always took long in the past). And usually it’s quite frustrating being in NYC all day. But, I felt really positive after this NYC visit.

After looking at her, examining her and looking at photos etc. Dr. B felt that a lot of what she has left is bone and some fatty tissues and scar tissues. Therefore after about 5 rounds of sclerotherapy… she’s done with it!!!

This is good news because we are ready to move forward with the next steps. And going forward is always a GOOD thing. She’s come a long way with the sclerotherapy and we are so blessed that it has been pretty successful thus far.

So while we were there, Dr. B called Dr. Waner up to his office from the hospital and Dr. Waner talked to him a bit and they both agreed that she was done with the injections and then Dr. Waner on a whim said we should come to his office and discuss the next steps. The next steps are to have a CT Scan & MRI done with a model of her jaw, and then a tonsilectomy along with a scope of her airway.

CT Scan & MRI are going to be done to take a look at her more closely in preparation for a future jaw surgery. She really needs jaw work done as her jaw is overgrown. However the timing of this needs to be accurate as to not affect her permenant-adult teeth. So they will look into this more and talk to the team of doctors that will be doing it in the future. The tentative scheduling for this CT Scan and MRI will be on August 19th. They are hoping to do it all in one day so they don’t have to put her under anesthesia twice.

The tonsilectomy and scoping of her airway will most likely be done on October 12th. (They may squeeze us in earlier if they have an opening). Her tonsils are a bit large – assuming from her condition, and they are going to remove them as to increase the amount of airway she has. They will scope her airway to see how things are and to see if anything further needs to be done. This will be a step forward into becoming decannulated (having the trach removed). No, it won’t be overnight but it’s in the foreseeable future and being any amount of steps closer to it, is a very good feeling. So hopefully things will continue to move forward in that direction. Keep that in your prayers!

We also spoke about her gtube. The area is always sore and red, we’ve battled with it for 3 1/2 yrs now and it leaks quite a bit too. She eats so well and there really isn’t a true need for it. I questioned Dr. Waner if she needed it for surgeries and he said she did not. As far as her pediatricians are concerned – they want to see that she is gaining weight while off of the gtube. So Andy & I have been doing our own little test and not feeding her by gtube at night anymore since right before we went on vacation (end of June). So far by our scales she hasn’t lost any weight- but she gained a pound. We’ll keep this up and bring her to the pediatrician soon to discuss with them possible removal eventually. Again perhaps not right away, but maybe in the foreseeable future (just a bit closer than decannulation). So think piggy thoughts for Mary Elizabeth, that she’ll eat and drink lots and keep it in your prayers as well.

After those things are done we’ll talk more about what is next and of course she’ll have other surgeries to clean things up and whatnot. But we won’t know what is next until those things are done.

So all in all it was a good appointment, after we saw Dr. Waner we had to walk back to the hospital and make the appts for the CT Scan & MRI and well it was a long day…. Mary Elizabeth was great with it all, so I’m proud of my little girl who is getting oh – so – big.

Well that’s it for the update. I’ll be sure to note any changes or updates as we continue. 🙂