Adam
TrachKid Profile
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Adam had to have an operation on 4/20/09 as he is a carrier of a rare gene that causes familial medullary thyroid cancer. His calcitonin levels (the indicator that the cancer was developing) was getting higher rapidly, and had already reached 10.6 pg/mL at the time of the operation. What was supposed to be a routine surgery and an overnight stay in the hospital to remove his thyroid, resulted in Bilateral Vocal Cord Paralysis. No one can explain why as the recurrent laryngeal nerves are still there and intact and show no visiable signs of damage. Due to the cord paralysis, he had to have a trach put in. Needless to say, as his parents, we are exhibiting all the emotions that go with this recent, highly unexpected condition including anger, frustration, sadness and guilt. Except that he was going to get cancer, he was a "normal" child in every way prior to the surgery. He was speaking, running, playing and had no other medical problems. We are learning to live with this news and change in our lives and continue to hope everyday that his vocal cords will wake up...
Adam has a 4 year old brother, Ben, a little dog named Mindy and an army of family and friends that love him so. We're grateful for our support network!
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trach supplies - free to child that can benefit
27 March 2011 - 6:02pm — rjfrederickWe are in Northern CA (SF Bay area) and have trach supplies for anyone needing them. They are new, unopened and include Shiley 3.5 trachs. If interested, please let me know via email rjfrederick@yahoo.com
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no Trach and doing great
5 December 2010 - 7:10pm — rjfrederickThis site was such a gift to me when I was going through the trach ordeal with Adam that I wanted to be sure to write and post good new on it too, in the hope that it will give other parents hope, as it did for me. Adam's trach was removed last April and I'm happy to say he is doing great. He has only one vocal cord and sometimes gets winded faster than most children but basically he's fine in every other way. He speaks, eats, plays and enjoys a totally normal life. He still has the scar but I am not in a hurry to have the skin graft operation. After what we've been through, it's so insignificant that I really don't care.
We're a little scared because we found out our 5 year old (Adam's brother) now also needs to have his thyroid removed at the end of this month. He too is a carrier of the thyroid cancer gene so rather than risk he get cancer, we have been advised by two doctor's (UCSF and Oakland Children's hospital) that we should have it removed. I'm petrified given what we went through with Adam becuase his vocal cords failed. Wish us strength and if you have a moment to pray for us in this busy holiday season, please do. The operation is scheduled for Dec. 22nd, right before Christmas so we'll have a mellow season this year.
best, JS
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| Title | Poster | Replies | Updated |
|---|---|---|---|
| trach supplies - free to child that can benefit | rjfrederick | 0 | 45 weeks 2 days ago |
| no Trach and doing great | rjfrederick | 0 | 1 year 9 weeks ago |
Guestbook
Bay Area trach parents?
We are interested in getting to know other parents and children in the SF Bay Area with trach children- let us know if interested in play groups. We'd love to learn from and get to know you! Adam and family
home today
Adam came home today!
After a month at the hospital, it's such a blessing to have him here with us again. We will continue to pray everyday for vocal cords to wake up but in the meantime, he's doing pretty well with the passy-muir.
frustration
I'm having a hard time lately. Ray does more than me and I feel like a terrible mom as I am so angry at the situation we now find ourselves in. Adam is the only one that doesn't seem to mind so much; he continues to smile and have an excellent attitude. I, on the other hand, hate that his life has changed so much since April 20th. It wasn't supposed to turn out like this and I'm bitter that it has. We keep looking for small windows that keep our hopes up but naturally they don't come fast enough. The speech specialist says he sees great progress and that she actually heard voice (whatever that means..) but then we hear that if nothing happens in 6 months, the chance is very slim that his vocal cords will come back. I want to just cry when I hear that.. is it possible to hope any more? To want something so badly??!!
vocal cord paralysis
Hi there. My now 9 month old baby boy, Jonah was born with vocal cord paralysis. Full term, 9lbs, no signs anything was wrong until he was born and had issues breathing. He had the trach put in at 5 weeks of age. I feel your pain. I was not expecting to have to deal with a trach either. It is hard work. Jonah had a g-tube for a few months but now takes a bottle well and is slowly getting used to solids. I don't want to live with the trach waiting for years to see if Jonah's vocal cords will ever move. We are booked in to have lateralization surgery close to Jonah's 1st birthday. Fingers crossed. I wish the best for Adam and your family,
the waiting game
I'm not sure how long we'll wait before we try to do something. It will likely be at least a year and in the meantime, he is at least "whispering" out some new words. Does Jonah have bilateral paralysis? I'm not familiar with lateralization surgery; I'll have to learn more about it. I don't want to have to think about it as I hope every day. However, we may have to do it too. thank you for your well wishes. Please keep in touch; I'm curious to see how the surgery goes and will keep you in my thoughts and prayers.
progress with speaking
but still no vocal cords movement. Everyday i question what the (*&$ happened during that operation just a few short months ago to make his cords "go to sleep" after functioning perfectly fine. I can't help but be angry some days and wonder why it turned out this way for him/our family. Hope is something I refuse to give up on... Inthe meantime, he is whisper speaking more and more words everyday, which is good. I'm hoping speech therapists can help too. We've had a heck of a time getting assistance from the state, the county and other organizations that are supposed to help families in our situation and insurance runs out soon. We are a true living example now of our terrible health care system. I keep fighting for the care I believe Adam deserves though from a system that we pay so much into.
i have a 7 month old
hi, my name is nellie, I know what you fill, I also went threw it, I remember the day i walked in the room when my son alexander had his tracheostmy i was very sad but also in the other side i was happy because it sved his life, my son has tracholbroncomalacia, and subglottic stenosis. We also had to learn everything, nd it was hard because i also have a 2 year old and she need lots of attention. But god is making us be stong nd there is challenges he has chosen for us. At times i would ask my self what did i do wrong? Today i went outside , and there was this woman she looked like she was at least 7 months pregnant, she was smoking i was angry, i said inside me i just wish she could meet my son and she what he went threw, i never smoked in my life and he came out like this. Imagine hers! Its just sad for those kids who have parents like those.
well got to go take care of you son and family you can also find my son here his name is ALEXANDER REYES
I know how you feel
My son - today - is 19 months old and its been 19 months too long that he has his trach! You can see Clintons profile on this website and the reasons why he has a trach. We are awaiting attempt #5 to remove the trach. We see our Dr. on July 23rd and find out how Clinton is progressing. Its normal to feel the way your feeling. I was mad angry and very upset when Clint got his trach at 3 weeks old. I cried every day for about 2 months and would have to try really hard not to loose it when I would tell people the situation - but most times - it didnt work! I know how you feel! Im glad to see that he is using a passey - Clint wears his 100% of the time and we hardly have to suction. It makes things a little easier! I have spoken with Amber from this site and her son is scheduled for surgery - there is hope out there - Stay strong! Keep us posted - I would love to hear how he is doing.
How is Adam doing?
I havent seen a post from you in a while and was wondering how Adam is doing? Any change with his vocal cords? How is he handling talking? Would love to hear from you....
baby steps
Adam can now drink thin liquids and continues to make good progress. We are now working on the vocalization. He wears his Passy-Muir valve except in the evening and is doing well. We were even been able to block his trach (using obturator) for 90 minutes one evening and he did fine. I just don't understand how that is possible if he needs the trach to breathe. We wrote the dr and they said it could be that the trach is holding is windpipe open. I don't understand this though. I'm so very much hoping what I am seeing as progress means the vocal cords are waking up. I'm scared to hope to much though for fear of terrible disappointment.
my child is actually loud- even with a trach!
The amazing thing about Adam is that he hasn't seem to let this trach business slow him down a bit. I actually some one tell me the other day that he to loud to which I responded "he doesn't have any vocal cords"... Needless to say, this is all very puzzling to me. We go mid November to have the dr. look at his cords and see if anything is moving. I am so scared. In the meantime, he is doing great. His speech therapist tells us he's right on track for a 2 year old and he has such a good attitude. If only we, as adults and his parents, could have such strength and resolve all the time!
good news- trach can come out
We had wonderful news a few weeks ago. Adam went in for a broncostophy during which we learned that Adam now has one vocal cord functioning, the right one, and so that means that he can have his trach removed. We will decannulate in March. They would have done it a few weeks ago but he had a cold so his upper airways weren't fully cleared so they didn't want to do it with him not at 100 percent. With one vocal cord, he is able to close them entirely though, which is good news as it prevents aspiration. Needless to say, it's been a long road and we are so happy that there is a light shining at the end of the tunnel.
good news- trach can come out
We had wonderful news a few weeks ago. Adam went in for a broncostophy during which we learned that Adam now has one vocal cord functioning, the right one, and so that means that he can have his trach removed. We will decannulate in March. They would have done it a few weeks ago but he had a cold so his upper airways weren't fully cleared so they didn't want to do it with him not at 100 percent. With one vocal cord, he is able to close them entirely though, which is good news as it prevents aspiration. Needless to say, it's been a long road and we are so happy that there is a light shining at the end of the tunnel.
learning to drink
Adam is doing better with the drinking and thankfully, after only 2 weeks of having his trach in, is babbling and saying words already. Naturally, we will never give up hope that his vocal cords will come back but in the meantime are thankful for the good progress to date. We continue to struggle with his ability to drink thin fluids (water, milk) but are going to keep working with it to avoid a g tube as long as we can.