These past two weeks have been tough health wise for our family, but it seems we are finally coming out of it. Both Tom and Audrey got the flu, which was pretty miserable for the both of them. Tom had it last week, and Audrey had it this week. Tom has been feeling better for a while now, but Audrey is just now starting to feel better. It was really scary to see her go through it, and we know understand why its dangerous for kids her age and younger to get it. We are so thankful to see her feeling better finally. Harding was probably the healthiest out of the 4 of us these past two weeks. He had a fever one night last week, with some increased secretions in his trach, but he never really got sick. Hes been doing great ever since. Today he will have two 1-hour breaks from his vent, which shows you how well he is progressing with coming off the ventilator!!! We havent mentioned this yet, but Harding also got his NG tube out!! It has been so great to see his sweet, chubby face without that tube on it. He had one in since he was a week old, so its a big deal for our family that its gone. We talked to the doctors yesterday and basically told them that now that his diaphragm is fully functional again, wed like to go home WITHOUT a ventilator. They agreed, and seem confident based on how well he is doing, and they think he will succeed in coming off the ventilator. Harding is a very special case for them (theyve never seen a kid with double phrenic nerve paralysis at Cincinnati Childrens before) and they are unsure how long it will take to wean him off the vent, but they seem confident that it will be a much shorter process than most of the kids they see. Most of the kids they see have never breathed on their own and have always had a ventilator, so the weaning process for those kids is very long (can take years). But since Harding has breathed on his own for most of his life and has not been on a ventilator that long, they think he will be easier to wean off of it. His only respiratory issue was his diaphragm being paralyzed, and now that its no longer paralyzed he has no reason to stay on the ventilator, so they want to get him off of it as soon as possible. Im sure most of you are thinking How long will it take? and honestly we have no answer for you because they doctors dont even know. Again, Hardings case is very rare and theres not a lot of information out there to help the doctors know exactly how to proceed. So they are just going to keep weaning him off the vent at a good pace until Harding shows signs of telling them not to. Tom and I are hoping that this process will only take a couple months so that we dont have to stay in the hospital too much longer, but we also know that having any kind of expectations at this point is a little unrealistic. We are just going to continue to pray God to do miraculous things in Hardings body that will enable him to come off the vent safely and soon.
Posted on: Tue, 30 Dec 2014 15:50:15 +0000
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