Tuesday, April 15, 2008
Getting closer....
Dr. Terry Such Neibar came in this morning and said that they want to try the GJ-tube and then it is home for our little man. She said that it would be just a matter of maybe one day after the tube is changed before he is released. I do not know about all of you, but I find that it is very exciting and very scary at the same time. It is pretty nice to be here in the hospital and know that if anything goes wrong the nurses are right outside the door or even taking care of it already. For instance: When I was spending the night last week with Charlie, the nurse woke me up in the middle of the night and said that Charlie had not peed for too long and he needed to catheterized and then given an IV to hydrate him. If he had been home, I think that we would most likely have waited until the morning to do anything about it. He probably would have been all right but it is nice to know that all is being charted and measured (measured in and measured out). But truly, on the positive side, he has progressed to this point and I am excited the most for this. Still not a definite day but real soon. Grandma Kathi
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13 comments:
That is So SO SO AWESOME. I am so excited for your entire family. I hope things continue to go well and he is able to settle in at home soon. I think he will continue to make even larger Charlie steps as he is able to settle into his new home. Keep up the good work Charlie
The nice thing about the GJ tube or any tube is that as long as there is water going in, it should be going out. The only time you may have problems is if there is something wrong with the kidneys, but there are great docs that can help that out also, we know from experience! Congrats and I know the feeling. It truly is bitter sweet.
Congratulations! Going home might be just what the doctor ordered! Home will always be more comfortable for everyone instead of hospitals. I am sure along with some uncertainty of course of knowing exactly what to do when he is upset but motherly instinct will always kick in and you will know exactly what to do. God bless your family and this incredible lesson in life of just how precious life truly is. I hope you find some peace of mind very soon. My thoughts are with you.
Congratulations! I think I would be terrified too, however I agree that home is always more comfortable than the hospital and there's something healing about the environment. Good luck and all my love and prayers will continue!
Hooray for Charlie Iam so happy for you!!! As I have said in my posts beore there are many advocates who will help.Shyla
CONGRATS!!!! Going home is wonderful news. It will be weird and a little scary at first, but just remember that the ER is open 24 hours a day and medical help is only a phone call away. But I am sure you will all be fine, with all the support you give each other, I bet someone will be around to help out at a moments notice.
I bet Charlie will flourish being at home and having his big brother there all the time to stimulate him and love on him.
This is purely selfish--but I hope you will post once in a while so that all of us on the outside who have fallen in love with Charlie can see his wonderful progress. God has something big in store for him and I would love to watch it happen. But, I also can respect your privacy and the need to just be yourselves and not worry about the blog anymore.
I think you will not miss anything at home in fact I bet that you all will catch things earlier than the hospital would. Plus with the G-j tube you can give him water bolus and he will pee. As a nurse we tend to overlook that sometimes patients don't urinate on our schedules. You and Charlie are going to flourish at home. You have come so far and many prayers from Mass will continue to come your way.
I found out about Charlie through the grapevine, and I have been checking his blog daily for the last several weeks. I don't know any of you, but I love this little boy. He reminds me so much of my own son, who is only a few months older than Charlie. There are so many similarities...blond hair, blue eyes, sweet smile, same clothes, even an older brother who loves The Incredibles and tries to impose it on all of us. I look at the pictures of Charlie in the hospital and sometimes I cry because I can easily picture my baby in his place. Then I look at the pictures of Charlie when he was healthy and sometimes I cry because I see what a sweet, beautiful boy he is, and how he doesn’t deserve any of this. I know how quickly life can change, for the better or the worse. There is a quote by Neal A. Maxwell that I was given during a personal trial that says, “The same Everlasting Father who cares for you today will take care of you tomorrow and everyday. Either He will shield you from suffering or He will give you unfailing strength to bear it. Be at peace then and put aside all anxious thoughts and imaginings.” The Lord is watching over Charlie, and He is watching over his family. He will help you as you bring him home and take care of him. Your lives will go on. May He continue to bless you and lift you up, and may we all be blessed by watching the quiet strength of this sweet little boy. Thank you for sharing him and allowing him to be a part of my life.
WOW, that is so exciting! There is such a great support system here so I know it will all go smoothly. I know you guys will be busy once you get home but we would love updates, especially at the beginning.
YEAH CHARLIE!
You are going to do great, Coop is going to love his new home and Britt is going to love having his little brother there.
Exciting but nerve-wracking I am sure but if anyone can handle it, you guys can.
If anyon can handle it is you guys and your huge extended family and friends. I look forward to the day you can all live as a family and this is a thing that is a vivid, yet important memory.
I love you guys... Jill B
love you guys! Rox
It looks like the day we have all been longing for is finally here. You are the most caring and dedicated parents. I was thinking tonight how much you have changed throughout this ordeal. You have become heroes right along with Charlie. I love you and know you will continue to amaze us all.
Stefanie
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