Maggie had the GJ-tube placed. They did it under GA and she seemed to do okay. They did say that if she has problems with this tube or ever needs it replaced she will always need to be put under GA. So hopefully we don’t have problems with this thing any time soon. They only place these things under GA on Thursdays so if she happens to have problems on any other day it will be a process to get the right people in to get this taken care of. But he made it very clear that she must be put under no matter what. He also said that if this doesn’t work or she has too many problems with this then he suggests that we don’t do a GJ-tube but a tube that is surgically placed on the right side of the abdomen that would go right into her intestines. First we need to see that having the tube back down in the intestines will even do what we are hoping before we go there.
Maggie has been in a lot of pain. When she actually went to recovery after the tube was placed. The nurse was a little frightened. She said that the anesthesiologist just handed Maggie over with her heart rate in the 40’s and really low blood pressure and he didn’t bat an eye. She was so upset she was saying that since he wasn’t concerned she tried not to be but she told me that when they see kids with the numbers Maggie had she would start chest compressions (which by the way is on her DNR so she really couldn’t do that) but she was just very flustered by the whole situation. Luckily one of the nurses that took care of Maggie last week was near her and recognized Maggie and reassured the other nurse that this IS just how Maggie is. I think she was happy when she could pass her off to the next section with a different nurse. All of the nurses when they get Maggie get really nervous with her unless they have had her before. Even before Maggie went back to get the tube, the nurse that was doing her vitals just couldn’t accept that Maggie's heart rate was really in the 50’s and 60’s while awake and moving and even upset. I had to keep telling her that this is right and that she can wait forever but its never going to change. She ended up leaving it on for about 20 mins before accepting that it wasn’t going to go up. Anyway we are just really happy that this is over and are really hoping that everything will work and will do what she needs. If anyone that has kids with tubes would like to share with us what kind of ferral bag or drainage bag they use for the g-tube part that would be really great. We have tried a certain ferral bag before with no luck so I think we are going to need to try a different one but our doctor doesn’t know what to try. The one we have tried has a tube that is like 6 feet long, its really crazy and doesn’t do a thing for Maggie. We need something that can get air out and the food that she will take by mouth. We appreciate any suggestions!
We really are so grateful for all the prayers! We never know how things will go with Maggie being sedated. There are very few things they can use to sedate her and things seem to go much smoother when they just use the stuff that we know works but its still never easy to have to leave her in someone else’s hands. So thank you so much for the prayers and support it means so much to us!!
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