update on J.D.

[Guest guest]

great to hear he is doing ok when so many others arent hugs ellen

>

> Hello Everyone

>

> JD is doing better. The doctors feel like the trach was a good deal for

> him.

> They have begun to wean down his ventilator settings (rates and pressure

> settings). I believe he was at a rate of 16 which means the vent was

> giving him

> 16 breaths per minute and he was doing the rest on his own. The most

> encouraging thing about it is that he is breathing over the vent settings

> which is

> good. His heart surgeon came by, Dr. Leonard, and relayed to Mandy

> that

> he was so impressed with his progress. Dr. Brown, his ENT, came by and

> switched his trach tube to a larger one because there was some seeping and

> leakage

> around the initial trach tube put in. Dr. Brown is also impressed with

> his

> progress. He is on antibiotics right now to rule out any possible

> infections.

>

> Today, he is being assessed or has been assessed on sucking and

> swallowing.

> This will be a day to day process by speech therapy at

> Childrens. Childrens

> doctors feel if they can teach him to suck and swallow in a shorter period

> of

> time then he can feed through the mouth. If this cannot be accomplished

> and

> sucking and swallowing will take longer for him to learn, then they will

> insert

> a g-tube in the stomach for feeds to allow him to get the nutrition that

> he

> needs to allow him to grow. We should know something about the g-tube by

> next

> week. It looks possible that JD could come home by March if all goes

> well. We

> are not sure if he will require an at home nurse. Regardless, we consider

> JD

> to have made unbelieveable progress. Right now he needs to come off the

> vent

> and the doctors are working toward that goal. If the g-tube is done, it

> will

> be temporary to allow maximum nutrition so that he can grow. Dr. Brown,

> his

> ENT, and Dr. Kirsch, his cardiac intensivists has assured us the g-tube

> would

> be only done for maximum nutrition to allow him to grow and would only be

> temporary. We suspect the trach will be in place for at least a year maybe

> more

> until his choanal atresia nose repair is deemed successful and he can

> successfully breath through the nose with recurring problems. He now

> weighs about 7 3/4

> lbs. And he looks good.

>

> We will update you when we know more. Keep believing and Keep

> praying. God

> is working a miracle daily in the lives of our children especially

> JD. God is

> in control and are faith rests in Him as He guides the medical staff at

> Childrens in JD's recovery.

>

> In His Hands,

> and Mandy

>

>

>

[Guest guest]

Thanks for the update; I've been wondering about him! If he has to get a

G-tube, it's not the end of the world. You can be certain he's getting all the

nutrition he needs while still working on the oral feeding when he's able/ready.

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

[Guest guest]

and Mandy. I'm so happy J.D. is improving. What caught my eye was

" speech dept. evaluating suck/swallow, to see if he can learn quickly and

efficiently. Did he ever attempt oral feeds? Did he aspirate? For , it

wasn't

a matter of learning-it was the floppiness of the valve that is supposed

prevent the feed from entering the lungs. Of course U wouldn't want that

happening, even with the trach. in place. We used to make pacifiers with a 2

by 2

stuffed inside a premie bottle nipple, and fastened to a washcloth with

surgical tape. Do they still do that? The washcloth gives the baby something

to

hang on to, so they don't lose it so often. U know,I haven't been on long-so

I'm not familiar with J.D.s history, so if this doesn't apply , please

excuse me and disregard-I'll tell you what else I did to determine if she was

aspirating-add food coloring to about 2 oz. of formula-or pedialite-U'll see it

on the next cough or suction if he's aspirating!!!! Just thinking- pedialite

is so thin-if he does feed by bottle its easy for them to take in too

much.when they're first starting, so maybe watch out for that too. And premie

nibbles are better-smaller opening. Ok, that's all I can think of. Take care.

, mom to (now 20 yrs old).. Continued success for J.D.

[Guest guest]

The past few days I have seen and I make some difficult decisions in

regard to the care of JD. We feel that the decisions we have made are the right

ones and we have trusted in our Heavenly Father to guide us.

JD had another surgical procedure done at Childrens Medical Center yesterday.

Let me say this, JD hasnt had many issues feeding via means of oral gastric

tube. In fact, as of late last week he had started bolus feedings through the

oral tube (feedings every 3 hours at approx. 2 ounces.) There has been very

little reflux through the feeds that he was getting but the possibility is

there. Dr. Renard who we completely trust recommended late last week that

JD have the g-tube inserted in the stomach and then recommended a Nissen

procedure to hopefully eliminate the possibility of reflux. This is a common

procedure done in children with CHARGE syndrome and with children that have

trachs. The reason it was recommended was so that he wouldnt reflux into the

trach and possibly get formula into his lungs which could cause pneumonia.

and I struggled with this decision through the weekend but after we

talked with several people we felt more comfortable getting this done and taken

care of. We understand that JD will require a more lengthy time to learn to

suck and swallow etc. with the help of speech therapy. Dr. Renard did the

surgery yesterday and we trust him completely since he was also involved with

the Tracheoesophageal Fistula repair he had done at nine hours old.

What was done was the g-tube insertion to allow feedings to continue via the

g-tube. Dr. Renard has given us the opinion that he will be able to feed via

the mouth at some time in his life. In fact, when sucking and swallowing

reflexes are attained he will be able to feed via the mouth with the g-tube.

Dr. Renard has stated the g-tube is temporary. The Nissen procedure he did was

to eliminate any reflux which could occur. The Nissen is a common procedure

done to infants and to adults with reflux problems. It involves taking a small

portion of the top part of the fundus of the stomach and wrapping it around (360

degrees) the esophagus where it connects with the stomach. This creates a

tighter valve at the top of the stomach to eliminate hopefully any reflux. For

now, JD will have his feeds via the stomach g-tube while he receives speech

therapy.

I know this is quite long. This was a difficult decision but we feel it was the

right one. JD came through the surgical procedure well with flying colors. He

is still in ICU at Childrens. What will take place now is the resuming of his

feeds to allow him to grow. They will continue to wean the ventilator down and

eventually get him off of the vent. JD will be moved hopefully soon to another

ICU unit on the main floor of Childrens when more progress is made. Attempts

will then be started to get JD ready to come home. It is unknown when this

will happen but we expect late winter early spring for JD to be home. His

condition is still very guarded but he is listed as stable. Regardless JD has

made alot of progress. It is still unknown to us what we will face when JD

comes home regarding his care but we understand the staff at Childrens will

guide us in his care and will guide us in what needs to take place when JD comes

home.

Keep praying and Keep believing. We believe God has worked a miracle and is

still working a miracle. JD now weighs 8.8 lbs and is approximately 22.5 inches

in length. More to come when we know more. Our trust and faith rests in our

Eternal Heavenly Father who is continually at work guiding us and the staff at

Childrens in the recovery of JD.

In His Hands,

and , Livie & J.D. 4 months on Friday

[Guest guest]

I know how hard it is to make these decisions we have to make with

our little one. I hope everything keeps working out for you all. I

remember just having to have a g-tube put in was hard for me to take

in. I was lucky to have a great doctor and nurse with me in the NICU

makeing sure I was ok, I lost it. I couldnt handle more bad news,

but it all turned out ok. She is still tube feed but she is working

hard everyday to learn how to feed by mouth. She works til she gets

so tired that she falls asleep and the rest goes in threw her tube.

I will keep praying for you all!!

Hugs,

Crystal and Eva(8 month charger)

>

> The past few days I have seen and I make some difficult

decisions in regard to the care of JD. We feel that the decisions

we have made are the right ones and we have trusted in our Heavenly

Father to guide us.

>

> JD had another surgical procedure done at Childrens Medical Center

yesterday. Let me say this, JD hasnt had many issues feeding via

means of oral gastric tube. In fact, as of late last week he had

started bolus feedings through the oral tube (feedings every 3 hours

at approx. 2 ounces.) There has been very little reflux through the

feeds that he was getting but the possibility is there. Dr.

Renard who we completely trust recommended late last week that JD

have the g-tube inserted in the stomach and then recommended a

Nissen procedure to hopefully eliminate the possibility of reflux.

This is a common procedure done in children with CHARGE syndrome and

with children that have trachs. The reason it was recommended was

so that he wouldnt reflux into the trach and possibly get formula

into his lungs which could cause pneumonia. and I struggled

with this decision through the weekend but after we talked with

several people we felt more comfortable getting this done and taken

care of. We understand that JD will require a more lengthy time to

learn to suck and swallow etc. with the help of speech therapy. Dr.

Renard did the surgery yesterday and we trust him completely since

he was also involved with the Tracheoesophageal Fistula repair he

had done at nine hours old.

>

> What was done was the g-tube insertion to allow feedings to

continue via the g-tube. Dr. Renard has given us the opinion that

he will be able to feed via the mouth at some time in his life. In

fact, when sucking and swallowing reflexes are attained he will be

able to feed via the mouth with the g-tube. Dr. Renard has stated

the g-tube is temporary. The Nissen procedure he did was to

eliminate any reflux which could occur. The Nissen is a common

procedure done to infants and to adults with reflux problems. It

involves taking a small portion of the top part of the fundus of the

stomach and wrapping it around (360 degrees) the esophagus where it

connects with the stomach. This creates a tighter valve at the top

of the stomach to eliminate hopefully any reflux. For now, JD will

have his feeds via the stomach g-tube while he receives speech

therapy.

>

> I know this is quite long. This was a difficult decision but we

feel it was the right one. JD came through the surgical procedure

well with flying colors. He is still in ICU at Childrens. What

will take place now is the resuming of his feeds to allow him to

grow. They will continue to wean the ventilator down and eventually

get him off of the vent. JD will be moved hopefully soon to another

ICU unit on the main floor of Childrens when more progress is made.

Attempts will then be started to get JD ready to come home. It is

unknown when this will happen but we expect late winter early spring

for JD to be home. His condition is still very guarded but he is

listed as stable. Regardless JD has made alot of progress. It is

still unknown to us what we will face when JD comes home regarding

his care but we understand the staff at Childrens will guide us in

his care and will guide us in what needs to take place when JD comes

home.

>

> Keep praying and Keep believing. We believe God has worked a

miracle and is still working a miracle. JD now weighs 8.8 lbs and

is approximately 22.5 inches in length. More to come when we know

more. Our trust and faith rests in our Eternal Heavenly Father who

is continually at work guiding us and the staff at Childrens in the

recovery of JD.

>

> In His Hands,

> and , Livie & J.D. 4 months on Friday

>

>

>

[Guest guest]

-

Yes, difficult decisions all the way thru for you guys! I'm glad you came

to a decision that you felt comfortable with and that you feel trust in the

drs. I look forward to hearing about JD's progress with feeding as he

recovers from surgery and continues to grow and develop. Wow -- 8.8 lbs!!

I remember when my Aubrie hovered in the 6 lb range for what seemed like

forever!

Michele W

Aubrie's mom

[Guest guest]

a good decision and a good definition of the nissen for others who may be

queering this procedure

>

> -

> Yes, difficult decisions all the way thru for you guys! I'm glad you came

> to a decision that you felt comfortable with and that you feel trust in

> the

> drs. I look forward to hearing about JD's progress with feeding as he

> recovers from surgery and continues to grow and develop. Wow -- 8.8 lbs!!

> I remember when my Aubrie hovered in the 6 lb range for what seemed like

> forever!

>

> Michele W

> Aubrie's mom

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>