That sucks! You and Mike must be kind of numb right now.
Just remember that the Doctors did not say "never", they said "doubt". Jude has already done a lot of things they didn't think he would do. There is always hope. I have a friend who has a daughter with CP. The doctors told her last year that her daughter (almost 3, I think) is profoundly blind and deaf...please explain to me how a blind, deaf child can try to grab a pen out of the nurse's hand with amazing accuracy? Or can *know* that the person talking to her has left the room, and that she needs to throw a hissy to get them back in the room? I don't care if they looked at the optical and auditory nerve and found them "pale and lifeless"...it sure looks to me like she can see and hear--at least a little!
I know this road that you are on with Jude is a very bumpy road. But just think of how strong you are now, and the things that your story have inspired in you and your family. How many kids Emily's age would even *think* about the sibs of other patients and devote so much time and effort to making their lives better...on a continuing basis? Emily is special in a very good way.
Hey Jenn - I wanted to respond to your post earlier about how the x-rays showed the aspiration....Sigh...I REALLY wish doctors would quit telling parents that aspiration only shows up in the top of the lungs etc.....The truth is, if your kid has low muscle tone or not a very good cough reflex, that stuff is going to go all the way through their lungs!
We learned the hard way...Christopher was on the vent 17 times in 6 months after OHS - all due to aspiration. He drowned at least a dozen times before somebody finally believed that he was aspirating because of the x-rays. Then it took another 6 months to get all of the crap that was packing into the bottoms of his lungs up and out. What a mess.
No, having a tube is not all sunshine and roses. Although it is much better than the alternative. Christopher now has permanent lung damage and brain damage because of aspiration.
I DO hope that once Jude is NPO for awhile and getting all of his nutrition, he is able to go back to eatig by mouth. :) The fact that he was able to do it originally is WAY ahead of where we were. He knows what to do and that is half the battle. How do you teach a child to swallow? Our guy looks like he will probably never do more than maybe taste a few things. But that is OK. At least he is still here with us.
Sending you guys lots of prayers for Jude ot get better and an easy surgery.
Well crap! But knowledge is power. If you dont know you cant fix it, I hate that he has to have that in his throat, I am sure it is uncomfortable but I hope he can adjust to it! Glad to hear that otherwise he has improvement, Love to you.
Not to get your hopes up but I would get the swallow test done again when he is back to normal Jude. His suck swallow could be not working in the right coordination when he is under the weather. My Finny is not supposed to eat anything by mouth due to aspiration but he does but only when he is well. I loved the doc's comment about you making the diagnoses but he pat yourself on your back girl because YOU do know your child a doctor won't know everything just by reading his chart. Look my Finny does things that there is no way he should possibably to do but he does. Hang in there
I've been reading your blog for a while, but I've never commented. I'm sorry to hear about Jude failing his suck/swallow test. I agree with Bronx, though, perhaps his failing the test is due to his condition. He's surpassed so much already and is such a special, sweet little boy. The doctors seem to have said a lot of things so far that aren't true, and Jude has proved them wrong. Keep the faith and know that there are people who are praying for you, your hubby and daughter, and sweet little Jude.
I just wanted to say that I am praying for your family. I also believe you will rise to the occasion of helping Jude adjust to the ng tube and whatever else is ahead. What a wonderful thing that we have the medical expertise to help our children thrive even when their bodies can't complete all tasks. I often lay with our daughter and am in awe that she is here and if it weren't for great doctors etc... we would not be so blessed. I know this is a tough journey, just know that there are many other parents who understand and will raise your family up in prayer. Hang tough!
10 comments:
Oh Jenn. I am so sorry.
sorry for the bad news, its going to be ok though. keep your everlasting faith!
That sucks! You and Mike must be kind of numb right now.
Just remember that the Doctors did not say "never", they said "doubt". Jude has already done a lot of things they didn't think he would do. There is always hope. I have a friend who has a daughter with CP. The doctors told her last year that her daughter (almost 3, I think) is profoundly blind and deaf...please explain to me how a blind, deaf child can try to grab a pen out of the nurse's hand with amazing accuracy? Or can *know* that the person talking to her has left the room, and that she needs to throw a hissy to get them back in the room? I don't care if they looked at the optical and auditory nerve and found them "pale and lifeless"...it sure looks to me like she can see and hear--at least a little!
I know this road that you are on with Jude is a very bumpy road. But just think of how strong you are now, and the things that your story have inspired in you and your family. How many kids Emily's age would even *think* about the sibs of other patients and devote so much time and effort to making their lives better...on a continuing basis? Emily is special in a very good way.
Hey Jenn - I wanted to respond to your post earlier about how the x-rays showed the aspiration....Sigh...I REALLY wish doctors would quit telling parents that aspiration only shows up in the top of the lungs etc.....The truth is, if your kid has low muscle tone or not a very good cough reflex, that stuff is going to go all the way through their lungs!
We learned the hard way...Christopher was on the vent 17 times in 6 months after OHS - all due to aspiration. He drowned at least a dozen times before somebody finally believed that he was aspirating because of the x-rays. Then it took another 6 months to get all of the crap that was packing into the bottoms of his lungs up and out. What a mess.
No, having a tube is not all sunshine and roses. Although it is much better than the alternative. Christopher now has permanent lung damage and brain damage because of aspiration.
I DO hope that once Jude is NPO for awhile and getting all of his nutrition, he is able to go back to eatig by mouth. :) The fact that he was able to do it originally is WAY ahead of where we were. He knows what to do and that is half the battle. How do you teach a child to swallow? Our guy looks like he will probably never do more than maybe taste a few things. But that is OK. At least he is still here with us.
Sending you guys lots of prayers for Jude ot get better and an easy surgery.
Hugs!
Steph and Christopher
Well crap! But knowledge is power. If you dont know you cant fix it, I hate that he has to have that in his throat, I am sure it is uncomfortable but I hope he can adjust to it! Glad to hear that otherwise he has improvement, Love to you.
i'm so sorry. you guys are in my prayers.
can't your boss just let you take a personal day out of the goodness of his heart?
clearly you can't be in two places at once. try not to beat yourself up over it. you guys are dealing with an impossible situation the best you can :(
hang in there.
Oh Jenn. I am so very sorry...I know yall have tried so hard. I can't imagine what it must feel like. Keep up your faith!
Not to get your hopes up but I would get the swallow test done again when he is back to normal Jude. His suck swallow could be not working in the right coordination when he is under the weather. My Finny is not supposed to eat anything by mouth due to aspiration but he does but only when he is well.
I loved the doc's comment about you making the diagnoses but he pat yourself on your back girl because YOU do know your child a doctor won't know everything just by reading his chart. Look my Finny does things that there is no way he should possibably to do but he does.
Hang in there
Hi Jenn,
I've been reading your blog for a while, but I've never commented. I'm sorry to hear about Jude failing his suck/swallow test. I agree with Bronx, though, perhaps his failing the test is due to his condition. He's surpassed so much already and is such a special, sweet little boy. The doctors seem to have said a lot of things so far that aren't true, and Jude has proved them wrong. Keep the faith and know that there are people who are praying for you, your hubby and daughter, and sweet little Jude.
I just wanted to say that I am praying for your family. I also believe you will rise to the occasion of helping Jude adjust to the ng tube and whatever else is ahead. What a wonderful thing that we have the medical expertise to help our children thrive even when their bodies can't complete all tasks. I often lay with our daughter and am in awe that she is here and if it weren't for great doctors etc... we would not be so blessed. I know this is a tough journey, just know that there are many other parents who understand and will raise your family up in prayer. Hang tough!
Dannette (mom in Kansas)
Post a Comment