I received the best email from someone today that explained her daughter had an NG tube. She said it SUCKS, and it will suck until you get the G tube. She explained they had been through the same thing. It was so refreshing to hear from someone else that it's not all sunshine and roses, that this situation SUCKS. It's not what anyone plans for their child, but you just have to do it to help them survive, and live the best life they can. Mike and I have to learn to listen and watch for positioning of the tube, or it can be life threatening. It's not what we planned, but lots of people have them, and now Jude does too.
I am not sure what our future holds, but I am positive Jude will be in it. His nurse is going up tomorrow to also be trained on the NG tube. We are taking each day minute by minute just like everyone else with a special needs child. I have learned so much from Jude. I am learning to let my bitterness go this weekend. To understand that not everyone will understand what it's like to care for an ill child, and to be grateful for every second you have, but I will. To know that material items do not matter, but each second of love does. I consider myself lucky, but wish my child did not suffer to learn this lesson.
4 comments:
Kaidence always threw hers up as well. I put off the G-tube FOREVER not wanting her to endure another surgery. The surgery was a piece of cake compared to the others and now I could never live without her tube. I wish all my kiddos had one (ok, not really) They are just great to have, easier and give you ppiece of mind. You can do this as well with the NG, but when she gets a fever I just slowly run some chilled cans of Pedisure to slowly cool her body. Good Luck and hang in there.
Our kids teach us some tough lessons.
If the ng tube is really bothering Jude, you might want to request some Ativan to help him calm down.
The NG tube is a pain Couple of days of that and Mike will be grateful for the G-tube.
Prayers for you guys--this is a tough time.
Just catching up on your blog after a few days away. WOW, you and yours went through a lot! Jude is a tough little cookie and so are you. Guess the apple doesn't fall far from the tree! Scary stuff, my heart aches sometimes when I read your blog about your baby boy Jude but at the same time I always come away feeling gratitude in my own life, even with the not so good days. Thanks for a true dose of reality. Big hugs to get better fast for Jude!
My thoughts and prayers are with your family. As a special needs parent, I have been through a very similar situation with my daughter when she was younger. Also, as a nurse, may I say you have handled this situation remarkably well! Good for you, you have done all of the right things for Jude. You were right to insist on the antibiotic when you did. Your knowledge is impressive. We learn so much when we are in the position we are in. I, like you, wish our children did not have to suffer for us to learn these things. However, our children, both directly and indirectly,help and inspire people every day. Also, do not be afraid of the NG tube situation, I have no doubt you and Mike will master this in no time. It is also very easily managed by nurses,as we often deal with these in the hospital setting.If any problems do arise, obviously,you will be on top of it. I wish you could have more time off from work during this time. I have also worked the night shift during my child's crisis situations,while my husband was with my daughter. It is so hard on very little sleep. I read the blogs of other special needs moms and our strength amazes me! We are truly blessed to be the people we have become. What fighters we are.
Stay strong.
God Bless
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