Re: New member intro and questions about choanal atresia and/or trachs

[Guest guest]

Hi Candi and welcome! My little 2 1/2 year old CHARGEr is also named

Luke. He also had bilateral choanal atresia and has had a trach

since November. Luke has had four dilations of his nose so far. His

first was when he was 3 weeks olds, the second was three weeks

later. The next two were just touch-ups that were done while he was

in for bronchoscopies. Due to his severe obstructive apnea and

oxygen needs he got a trach last November. The trach has been a

blessing to us and has only helped Luke's development. Instead of

spending all his energy on breathing, now he can focus on learning

and playing like he's supposed to, and he gets good sleep now too

which is very important for growth and development as well. I hope

that helps ease your worries about the trach little. Anyway, we are

in no hurry to get the trach out. The memories of Luke struggling to

breathe are still so clear. Sounds like your Luke is a very happy

baby so you must be doing a great job with everything. Keep up the

great work! If you want you can check out Luke's website at:

http://www.caringbridge.org/mn/lukejoseph . Take care.

>

> Hi Everyone,

>

> My name is Candi and my 5 month old cutiepie Luke has CHARGE. He

has

> lots of red hair and dark blue eyes and looks exactly like I did

when

> I was a baby. He was also born with bilateral choanal atresia,

> undescended testicles and cupped ears. Based on this, he was

> diagnosed with CHARGE at 3 days old. Since then we have gotten

> genetic confirmation that Luke does have a CHD7 mutation. When Luke

> was 6 days old his ENT tried to repair his chonanal atresia, but

found

> that it was more dense than the CT showed, so he gave Luke a trach

> while we wait for him to get bigger and hope for a better chance to

> repair the atresia. This Thursday (the 19th) Luke is having PE

tubes

> put in because he has had fluid in his ears since birth. While he

is

> under, his ENT is going to scope his nose and hopefully be able to

> drill out the atresia. His hearing will also be tested at the end

of

> the surgery, since we haven't been able to get an accurate result

> before now. These seem to be Luke's main CHARGE issues so far. His

> tests have been negative for colobomas or heart defects.

>

> The closer it gets to Luke having his atresia repaired the more

> anxious I get. From the little bit I have read so far, it sounds

like

> a lot of kids with CHARGE have to have several atresia surgeries. I

> would really appreciate any advice anyone has about this. I want to

> make the best decisions I can for Luke, but I feel like I don't know

> what those are right now. I would also love to hear from anyone

else

> living with a trach. It isn't as bad as I thought it would be, but

I

> wonder how it is going to affect his development if he has to keep

it

> much longer. He is very juicy, so the biggest problem we have with

> his trach right now is that he can't wear his HME very well. He

> tolerates it fine, but within a few minutes he has coughed and

gotten

> it wet. Is there any kind of HME that doesn't get ruined by that?

>

> Luke is a bit developmentally delayed at this point. He still

doesn't

> hold his own head up very well, but he is rolling to his left and

his

> right. Luke smiles a lot, and he loves his toys, especially things

> with mirrors and/or lights. His favorite toy is a plain silver

mylar

> balloon. Luke can swallow, so he is able to bottle feed. He loves

> feeding, but I wish he would eat more. OT is trying to help us with

> his dribbling. His suck is good, but when he relaxes food runs out

of

> the sides of his mouth, so it seems like half his bottle winds up on

> his burp cloth. He has done this all along, but it seems to be

> getting worse instead of better.

>

> Thanks so much for reading this and any advice about living with

> CHARGE that anyone can give me! I appreciate your letting me join

> your group. I feel like I have already learned so much from looking

> at your past posts.

>

> Candi

>

> Mom of 3 - Sam & Gus (5yo twin boys) and Luke (5mo chArGEr)

>

> Ps. We live right outside of Birmingham, AL, so Luke has all his

> doctors through our Children's Hospital. They seem to have done a

> great job of coordinating his care so far, but if anyone has any

> advice about doctors in this area, I would love to hear it.

>

[Guest guest]

Hi Candi--welcome! My daughter just turned 3 and had bi-lateral

choanal atresia. She was too small to have it repaired when she was

born and so got a trach at 3 weeks of age. She had her initial

surgery to repair her choanal atresia when she was over a year old--it

took a few surgeries to completely open her up, but they were done

within 3 months of eachother. She also had to get her tonsils and

adenoids removed before the trach because once her choanal atresia was

repaired, she still would be blocked from her tonsils and adenoids.

Her trach was removed just after she turned 2 years old and it's been

out for over a year now. She's never had a feeding tube, and has

always done well with eating by mouth. She did aspirate thin liquids

so we had to thicken her liquids to pudding texture for a while--but

now she does fine with water, etc. Her stoma is still open, even

after having the trach out for a year, so we have to it closed

surgically. As for her secretions--we did use robinul at times,

especially when we had to suction every minute--it seemed. We also

found that saline mist nebulizer treatments helped and atrovent

(ipatroprium bromide) nebulized treatments. The atrovent is similar

to albuterol, but it can be used to dry up secretions--and let me tell

you--it was used 2-3 times per day every day--and we loved it. Now

that Carmen's trach is out, we have no problems with secretions--it

just seemed to be the body's way of managing the trach. Please let me

know if you have any questions. We live in Michigan and so have all

of our care done at U of M (Mott Children's Hospital). They are

wonderful and we feel very blessed to be close to one of the best

hospitals in the country for children. I'm sure you do too! Best of

luck with your sweet baby, Luke.

, Mom to Zachary 5 years and Carmen 3 years (CHARGE)

> wrote:

> >

> > Hi Everyone,

> >

> > My name is Candi and my 5 month old cutiepie Luke has CHARGE. He

> has

> > lots of red hair and dark blue eyes and looks exactly like I did

> when

> > I was a baby. He was also born with bilateral choanal atresia,

> > undescended testicles and cupped ears. Based on this, he was

> > diagnosed with CHARGE at 3 days old. Since then we have gotten

> > genetic confirmation that Luke does have a CHD7 mutation. When Luke

> > was 6 days old his ENT tried to repair his chonanal atresia, but

> found

> > that it was more dense than the CT showed, so he gave Luke a trach

> > while we wait for him to get bigger and hope for a better chance to

> > repair the atresia. This Thursday (the 19th) Luke is having PE

> tubes

> > put in because he has had fluid in his ears since birth. While he

> is

> > under, his ENT is going to scope his nose and hopefully be able to

> > drill out the atresia. His hearing will also be tested at the end

> of

> > the surgery, since we haven't been able to get an accurate result

> > before now. These seem to be Luke's main CHARGE issues so far. His

> > tests have been negative for colobomas or heart defects.

> >

> > The closer it gets to Luke having his atresia repaired the more

> > anxious I get. From the little bit I have read so far, it sounds

> like

> > a lot of kids with CHARGE have to have several atresia surgeries. I

> > would really appreciate any advice anyone has about this. I want to

> > make the best decisions I can for Luke, but I feel like I don't know

> > what those are right now. I would also love to hear from anyone

> else

> > living with a trach. It isn't as bad as I thought it would be, but

> I

> > wonder how it is going to affect his development if he has to keep

> it

> > much longer. He is very juicy, so the biggest problem we have with

> > his trach right now is that he can't wear his HME very well. He

> > tolerates it fine, but within a few minutes he has coughed and

> gotten

> > it wet. Is there any kind of HME that doesn't get ruined by that?

> >

> > Luke is a bit developmentally delayed at this point. He still

> doesn't

> > hold his own head up very well, but he is rolling to his left and

> his

> > right. Luke smiles a lot, and he loves his toys, especially things

> > with mirrors and/or lights. His favorite toy is a plain silver

> mylar

> > balloon. Luke can swallow, so he is able to bottle feed. He loves

> > feeding, but I wish he would eat more. OT is trying to help us with

> > his dribbling. His suck is good, but when he relaxes food runs out

> of

> > the sides of his mouth, so it seems like half his bottle winds up on

> > his burp cloth. He has done this all along, but it seems to be

> > getting worse instead of better.

> >

> > Thanks so much for reading this and any advice about living with

> > CHARGE that anyone can give me! I appreciate your letting me join

> > your group. I feel like I have already learned so much from looking

> > at your past posts.

> >

> > Candi

> >

> > Mom of 3 - Sam & Gus (5yo twin boys) and Luke (5mo chArGEr)

> >

> > Ps. We live right outside of Birmingham, AL, so Luke has all his

> > doctors through our Children's Hospital. They seem to have done a

> > great job of coordinating his care so far, but if anyone has any

> > advice about doctors in this area, I would love to hear it.

> >

>