Saturday, January 29, 2011
Friday, January 28, 2011
And you get bored with that, just put on your Batman mask, get out your Batman computer and play Batman.
'Cause with 36 inches of snow out your front and back door, there really is not much else to do. How many more weeks to Spring????
Wednesday, January 26, 2011
Here are some of my favorites over the last few weeks:
"Mommy - with my new G-Tube I look like Daddy's favorite guy." - Daniel
"Whose that?" I ask
With hand in motion, "Z for Zorro!" - Daniel
On Sunday we were thinking about going out for a bit to a burger place which had games to play (not the horrible Chucky Cheese place). Upon realizing what we were talking about Daniel promptly chimed in "I will be so happy. Just look at my smiling face." Mind you the kid was still in his PJs.
I was talking on the phone with a friend of mine and told her I finally tried my hand at making soup. Again the little man heard me and shouted across the room "And I LOVED it."
When the OR nurse came in on Monday to wheel him down to surgery, she asked him "You are going to get your G-Tube fixed?" and pointed to her right side. (To Daniel it was the mirror image.) He, of course, had to correct her and said "No, not there. Here!" and proudly showed her his tummy.
Last night when I told him it was dinner time he politely told me "I am just looking for my Lego guy so be patience Mom. Be patience."
A friend of ours took care of our dog on Monday while we were in CHOP and she was very sweet and left Daniel a sweatshirt and brought over homemade cookies for him later that night. When we called to thank her, Daniel overhead me talking about getting new fish for his tank as we seem to be causing them mass suicide as of late. Again, realizing what I saying he said "Is she coming over to my house cause I will be soooooo happy if she did."During our post-op on Monday, upon waking up Daniel asked the very nice nurses if he could have an ice pop. Unfortunately they did not have any and then wanted grape juice (which never drinks) and again they did not have any. Feeling bad the nurse offered up the option of having an ICY which of course he was all over it. Now one would think we are in a hospital that your flavor of choice would be red or blue. NO!! They were wild cherry and COKE flavored. The nurse was nice enough to bring both as she struck out two other times. Upon telling Daniel the flavors, he jumped all over the Coke flavor one and proudly and loudly announced "I LOVE SODA." He NEVER drinks soda in our house. Where it came from I have no idea and yes, I could have crawled into a hole if one magically appeared.
And of course, my favorite of the week, asking his surgeon on Monday when he came to visit us pre-surgery, "What took you so long?" Yes, this got laughs not only from us but from throughout the hospital.
So our house is now full of laughter thanks to our little comedian. We know we should not laugh at him but the problem is, the kid is so stinking cute, how could you not find him funny and laugh!
Tuesday, January 25, 2011
His site looks good as the swelling is down from yesterday and is much less red. Not sure what is going on with the rash on his tummy as it looks like prickly heat but we will see what happens later today.
I think he and his tummy are a little more sore today as I am hearing a few more "ouches" this morning but that is expected as all the pain meds are out of his system. Hopefully we will not have to dive into our over the counter pain meds today to help with the crankies.
All and all, the "plug" appears to be plugging and the little man is back to him old self on another SNOWY day here on the East Coast. (Thank God it is snowing today and not yesterday.)
Thursday, January 20, 2011
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???
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.
Wednesday, January 19, 2011
Wednesday, January 12, 2011
Monday, January 10, 2011
And now that I have the song "Philadelphia Freedom" suck in my head. Enjoy your Monday!!