Put A Plug in It

UPDATE:

Daniel's procedure went extremely well today and we are home safe and sound now. As they said, the whole thing took a little less then an hour and he now as an incision about 1/2 to 3/4 of an inch right below his rip cage. The site is currently a bit red but is normal.

Daniel once again won many folks over today from the nurses to the Drs. And as we have come to realize Daniel has my "skill" of saying whatever comes to him mind. It certainly happened today as we were waiting for the surgeon to pop his head in to answer any question we might have prior to the procedure. Prior to the visit Daniel kept asking the nurse "what was taking Dr. B so long?" which the nurse answered "Why don't you ask him that when he comes in." Little did this nurse know that gave Daniel full license to ask. And yes, as soon as Dr. B came in, Daniel quickly asked "Dr. B, what took you so long?" Thankfully everyone in the room laughed and the Dr. did provide him with an answer. By the time Daniel went back to the OR, everyone associated with his case was talking about his question and loving him. Yes, only Daniel!!

He came out of anesthesia very well and has been asking for food and something to drink from the moment we got home. A very good thing! Now I just have to keep him "chilled" for the rest of the night.

So, the plug is in and now we are maintenance free. What am I going to worry about now???

Original Post:

Or that is what we hope will happen on Monday. Yes, the day is finally here to put a "plug" in Daniel's G-Tube site so he can stop "leaking" as we say here. After four months of hoping that his G-Tube site would close on its own and realizing it won't, the Drs. at CHOP will spend about an hour sewing up the five levels of skin, tissue, and muscle leading from Daniel's stomach to skin and in effect sealing off the track that once housed his G-Tube. (Who knew there was five levels?? I must have missed that in Bio class.)


Truth be told, it really does not leak all that much and there are some days that the site appears to be completely closed. But I do have to say it is heartbreaking to hear D's little voice saying "I'm leaking" or "My G-Tube hurts" as a little bit of stomach acid hits his skin. Truly no three-and-a-half year should be so proficient in medical language or understand what is going on with him so clearly and so early in his life. And as he said the other day when it was irritating him, "When are we going to get this fix?" shows what an amazing little man he is.

The funny thing is that this will be the first procedure that Daniel will have to be a NORMAL kid and be expected to act like any other NORMAL kid to get out of the recovery room. In the past all we did, or had to do, was put 4 to 8 oz of pedialite into D's G-Tube and off we went. Hopefully it will be that easy this time and all he will have to do is eat an ice pop or drink some water. Luckily it appears that his surgery is schedule early in the day (about 11:30 a.m.) and since he won't be able to eat or drink anything prior to the procedure, he should be at least thirsty in the recovery room. We will just keep our fingers crossed that we can keep him distracted regarding food.


Though I am OK with what lies before us, I would be kidding myself if I am not a bit sad to be having to do this and knowingly placing another scar on him. The good news is that though the site looks like this now......(the little circle is his G-Tube site)



After the procedure it should be a little line and in time it will be so small that no one should ever notice it. And, hopefully, after this the only time our little man will have to be placed under anesthesia is during his yearly visits to Ciny each April. Fingers crossed!


The crazy thing is that I am realizing that the road that we have been on, with all its crazy twists and turns, is finally coming to an end and truth be told, I am a little scared to find out what road we now must get on and where it will take us. The old road, in some very strange way, has been a very safe road and one we knew how to travel on and allowed us to travel to some incredible places, met some incredible people, and gave us a knowledge base unlike any other. I am glad that the road is coming to an end in some way so we can finally close this chapter in Daniel's life but I really can't believe that the end of the road is finally here. Such a strange place to be in. Once again this piece is so true..... http://www.eatef.org/node/13.