Re: Re: Speaking of ENT updates

[Guest guest]

Thank you . I know what bears you are talking about, our hospital gives

them out to the kids too. Kody has 3 or 4 of them now. His nurses spoil him

like crazy too! They always go to the cafeteria and make him this interesting

concoction, almost like a float, but it has blue slush and vanilla ice cream

in it. They call it the iceberg! In all the time we spend there, I haven't

seen them bring one to anyone else! And they know he likes M & M's so they

usually have them in their pockets. I told my husband that if Kody ever had

to have anything up his nose again, then he was going to the visit and he was

going to hold him! And today is IVIG day, but with the new port Kody trusts

it not to hurt and he thinks going to the hospital is great! So here's hoping

all goes well! I am glad that Autumn's yucky nose is better! )

Diane, Mom to Kody age 5, IgG sub. class def., epilepsy,asthma,GERD, sinus

disease and , age 15, age 14, Arika age 13, Kaila age 9, and

age 7...all healthy!

[Guest guest]

Thank you . I know what bears you are talking about, our hospital gives

them out to the kids too. Kody has 3 or 4 of them now. His nurses spoil him

like crazy too! They always go to the cafeteria and make him this interesting

concoction, almost like a float, but it has blue slush and vanilla ice cream

in it. They call it the iceberg! In all the time we spend there, I haven't

seen them bring one to anyone else! And they know he likes M & M's so they

usually have them in their pockets. I told my husband that if Kody ever had

to have anything up his nose again, then he was going to the visit and he was

going to hold him! And today is IVIG day, but with the new port Kody trusts

it not to hurt and he thinks going to the hospital is great! So here's hoping

all goes well! I am glad that Autumn's yucky nose is better! )

Diane, Mom to Kody age 5, IgG sub. class def., epilepsy,asthma,GERD, sinus

disease and , age 15, age 14, Arika age 13, Kaila age 9, and

age 7...all healthy!

[Guest guest]

Thanks ! I'll keep you posted about what the craniofacial surgeon has to

say, praying that he says it isn't complicated! Kody's cleft palette isn't a

normal huge gaping hole, basically he has coverage, just a tear drop shaped

hole way in the back of his mouth, but the cartilage underneath is missing

and the muscles holding up the roof of his mouth are wrapped around the

tonsils. Hoping that as he has grown bigger that maybe they

unwrapped....okay, I'm grasping at straws here, but stranger things have

happened! )

Diane, Mom to Kody age 5, IgG sub. class def., epilepsy,asthma,GERD, sinus

disease and , age 15, age 14, Arika age 13, Kaila age 9, and

age 7...all healthy!

[Guest guest]

Bless your heart, Diane! I know where you're coming from with the " head

understands but heart rebels " . I'm really sorry to hear that your little

Kody is going to have go through all this. Chad was the same age as Kody

when he had his T & A and sinus surgery.

I'll be praying for a good outcome and I'll pray for strength for you as

well.

, mother of Chad, age 9, " Hypo " , GERD, Asthma/Bronchitis, " Allergy

King " , Scoliosis, ??IGA Nephropathy and Anemia

Re: Speaking of ENT updates

>

> > Today I had to take Kody to the ENT about that one tube that won't come

out.

> > I thought this was going to be a quick, take a peek in the ear, and go

> > visit. Boy, was I wrong. I mentioned that his speech therapist at school

> > said that his voice quality has really gone downhill lately and that she

> > signed him up for another year of speech. Dr.Hart looked through his

chart,

> > pursed his lips, asked a few questions about Kody's sleeping habits and

his

> > medications and how often he has had the sinus disease. Looked up Kody's

> > nose with the flashlight, felt his lymph nodes, and then said that he

> > needed to use the scope up Kody's nose again. My heart sank. If there is

> > one thing on this planet that Kody hates more and is the most scared of,

it

> > is things going up his nose. And it isn't like he doesn't know what to

> > expect with the ph probe in recent memory! So me and the nurse held him

as

> > tight as we could while the scope went up and in. Kody screamed and

> > screamed and screamed and then begged " I am done now please, I am done

now

> > please " . It is in those moments that my mommy heart begs God to please

heal

> > my baby so he doesn't have to do these things anymore. So he can be a

> > normal little boy that has no idea what it is like to have objects

shoved

> > painfully up his nose (which by hte way bled for a while after). Anyway,

I

> > cried too. Afterward, he hugs me so tight and in this quiet tiny

pathetic

> > voice says " Can I have a rootbear flute now? " Dr. Hart says " a what?! "

and

> > I had to explain that he meant a rootbeer float! He gets one after every

> > unpleasant episode in his medical life (he gets lots! ( ). Well, my

news

> > isn't good. And I have to say that it really scares me. He has to have

his

> > tonsils and adenoids out. If that doesn't work then he will have to have

> > major sinus surgery. But. The thing is, that way back when we saw the

> > craniofacial surgeon (when he was two) he had said that Kody wouldn't

need

> > surgery to correct his cleft pallet UNLESS he had to have his tonsils

out,

> > and then he would have to have his whole palette repaired because the

> > deformity twists around part of his tonsils. If the tonsils come out,

the

> > roof of his mouth will cave in basically. So, Dr. Hart said he would

send a

> > letter to the cranio guy, and we are to make an appointment with him, so

> > that we get his opinion (maybe as Kody has grown bigger that won't be a

> > problem?) and also so that when the surgery is scheduled it will all be

> > done at once. There will also be a cat scan of the sinuses before then,

but

> > he says that doesn't really matter what it shows, the tonsils and

adenoids

> > have to come out. Plus, apparently there are crystals in his ears (What

is

> > that??) that Dr. Hart wants to look at under a microscope but he said

Kody

> > wouldn't sit still for that (gee I wonder where he got that idea???) and

so

> > he would do that during surgery too. But hey, the tube is gone now......

> > So thanks for letting me vent... it was just so awful holding him like

> > that. I know you all have felt it, and I know that you understand my

> > heartbreak. It is so hard to sit there and help hold him and allow

someone

> > to do something that hurts and absolutely terrifies him. I want to just

> > scream " LEAVE HIM ALONE! " but yet, I know that the sinus disease has to

get

> > resolved. And apparently his tonsils and adenoids are actually swollen.

> > Intellectually I understand. My mommy heart on the other hand is really

> > struggling.

> >

>

>

>

> Diane, Mom to Kody age 5, IgG sub. class def., epilepsy,asthma,GERD, sinus

> disease and , age 15, age 14, Arika age 13, Kaila age 9, and

> age 7...all healthy!

>

>

>

[Guest guest]

Diane, I am so sorry that the procedure was so traumatic. I can tell you

from personal experience that it is not painful. It feels uncomfortable and

scary but there usually no pain. Both of my kids have had their adenoids out

and my daughter

has had two sinus surgeries. Kids go through it so easily and it has

made a major difference in both of their lives. The ear infections decreased

to almost non- existent. When the adenoids swell with infection they have a

tendency to block off the sinuses and keep bacteria growing. It is like a

trap. It sounds like your son has a even greater need to work on the

structure of his palate and face. A cleft allows bacteria and food to keep up

into the nasal passages and sinuses. I have worked with many kids who have

had extensive repairs. If you do not like the ENTs style find another that

you can relate to. Some of them are pretty cut and dry . I think the bigger

picture with our kids is the infections can get into the blood stream and

facial bones and cause them to be much sicker. Kody is very lucky to have

such a loving mom. Our kids do go through alot and we need to be there to

love and hold them and in some cases protect them. I wish rootbeer floats

would suffice for Lucas he is into much bigger things. But we all have our

ways of treating them. I would be interested in what other people do after

painful procedures. I am running out of ideas.BARBIE

[Guest guest]

I just had another thought. DANGEROUS. Who else would you want to comfort

your child? As hard as it is we are so lucky that we can do that in the

present day and age of medical care. In the 40-60s parents had to drop there

kids off at the hospital and come back to pick them up later. Can you imagine?

Our kids need to know that we will be there for them unconditionally.

Whether they are going through a procedure or fall and scrape there knees or

break up with a girlfriend/boyfriend. What an oppurtunity we have to get

close to them and have an incredible relationship with them BARBIE

[Guest guest]

I just had another thought. DANGEROUS. Who else would you want to comfort

your child? As hard as it is we are so lucky that we can do that in the

present day and age of medical care. In the 40-60s parents had to drop there

kids off at the hospital and come back to pick them up later. Can you imagine?

Our kids need to know that we will be there for them unconditionally.

Whether they are going through a procedure or fall and scrape there knees or

break up with a girlfriend/boyfriend. What an oppurtunity we have to get

close to them and have an incredible relationship with them BARBIE

[Guest guest]

Hang in there Diane. I know it's a rough time for you and Kody. I'll be

praying for you.

Re: Re: Speaking of ENT updates

> Thanks ! I'll keep you posted about what the craniofacial surgeon has

to

> say, praying that he says it isn't complicated! Kody's cleft palette isn't

a

> normal huge gaping hole, basically he has coverage, just a tear drop

shaped

> hole way in the back of his mouth, but the cartilage underneath is missing

> and the muscles holding up the roof of his mouth are wrapped around the

> tonsils. Hoping that as he has grown bigger that maybe they

> unwrapped....okay, I'm grasping at straws here, but stranger things have

> happened! )

>

> Diane, Mom to Kody age 5, IgG sub. class def., epilepsy,asthma,GERD, sinus

> disease and , age 15, age 14, Arika age 13, Kaila age 9, and

> age 7...all healthy!

>

>

>