Re: Repeat open heart for Jonas...

[Guest guest]

Hallelujah!! I am so joyous for all of you! What a little man you have in

. Please keep us informed of how Sir Jonas is doing!!

Mom to Trevor 13, na (MDS) 9 and Bryson 6

__________________________________________________

[Guest guest]

What wonderful news - even though I feel funny saying open heart surgery is

wonderful news. I will continue to pray for Sir Jonas and your family. God

bless you!

Donna - Gram to Adam 3 mds and Skylar almost 3

Martz wrote:

Hello Everyone!

What joy to see so many new members on here! Welcome to all of you and blessings

to your children and families!

I wanted to give an update on " Sir Jonas " following his heart catheterization

which was performed on 7/6/05. The cardiologist who was doing the

catheterization explained that they were going to check the leaking tricuspid

valve Jonas' regular cardiologist had seen and also the right ventricular

enlargement. After the cath was done, they did something they called a

" Pulmonary Hypertension Study " . They would use echocardiography to measure the

pressure in Jonas' pulmonary arteries and confirm the diagnosis of Pulmonary

Hypertension. (Though they were pretty certain he had it). He said they would

administer nitric oxide to him and if his pulmonary pressures went down with it,

they would know that Jonas has the type that will respond to medications. This

meant that we would have Jonas around for another 10-20 years. If he did not

respond to this, then the outlook was not very good for our little guy.

The catheterization and study took 3 full hours! I was getting a bit nervous in

my chair waiting, but at 3 hours they came and said they were finally done and

so we went to talk with the doctor. The doctor started out by saying the he had

bad news that he thought in the end would turn out to be really good news. ( I

guess they teach doctors the art of mixed metaphors in medical school to keep

parents off balance!) He said that Jonas indeed had pretty severe pulmonary

hypertension ( reading of 55 in the pulmonary artery, which should be 17 at rest

and never over 30). He also said that Jonas did not respond to the nitric oxide.

However, while this procedure was all going on, the doctor noticed a fluctuation

in the oxygen saturation numbers in the two chambers of the atrium that was not

making any sense to him. The patch that fixed the hole last year between these

chambers was still there, visible and in tact. These numbers still bugged the

doctor and he felt he was missing something.

He called for his best echocardiographers/ ultrasound people and they came and

worked with him for the third hour. They finally saw it. The patch looked

perfect from every angle but one that they had a hard time seeing. The patch

over the ASD is detached at the bottom. So the bad news is that Jonas has to go

through the exact same open heart surgery again that he had before. The good

news about this is that the doctors feel that if the surgery is redone, Jonas'

Pulmonary pressures will go back to normal, the leak in the tricuspid valve will

quit (or they will fix it while they are in there), and they expect the heart to

shrink back down in the right ventricle. In effect, they expect a cure for

Jonas! We had not been given any hope before that there was any " cure " for this.

Technically there is not, but if it is being caused by a surgical failure, they

can repeat the surgery and if done before a lot of heart damage has occurred,

they can reverse it!

I nearly fell over in the hallway when the doctor told us this news. He asked me

if I was alright. I said, " I am more than alright, I am so happy I could nearly

fall over! " What a thing to be happy when someone tells you your child needs an

open heart surgery redone! The doctor told us that until they finally found the

leaking area of the patch, he did not have good news to tell us at all! I said,

" I realize that!! " The date of the surgery is not yet set, but we are expecting

it to be in the coming weeks. I dread watching Jonas have to go through this

again, but it is better than the alternative of being told to make the best of

what time we have left with him!

Bob and I are so relieved that there is hope that this will turn itself around.

was getting worried about Jonas. We tried not to say TOO much to him

about it, but he is a pretty smart and intuitive guy and he asked me the night

before the cath if Jonas could die. I thought he was worried about the cath, but

he said, he was meaning could he die from what was wrong with him. I told him

that he " COULD " die, but ONLY if God decides that Jonas has served every purpose

He has for him and wants him in heaven as one of his angels. I just told him

that God decides, not the doctors, not the hospitals, not the tests, only Him.

That seemed to cover it, and made feel better. When found out

there was a surgery to possibly make Jonas all better (essentially), and that it

would be done instead of our family vacation being taken... he asked if we could

still take Jonas to the zoo. I said of course, and he said, " Well, I like to go

to the ocean, but there will always be an ocean

to go to, and it is much more important to fix Jonas! " So, to the zoo we shall

go, and all will be well. I have to wonder who is teaching lessons to whom

around here. I so often feel that Bob and I are the ones learning important life

lessons from the boys!

Jonas' " case " will be presented Wednesday to the surgical team and we will be

hearing (soon I hope) about a date for the surgery. Thank you so much to all of

you who were praying for Jonas and keeping our family in your thoughts. We

really appreciate it!

Blessings,

Barb Martz

Mom to Jonas (MDS) 4.5 years & 10

[Guest guest]

What a relief. I couldn't even imagine the nerves your family has been

feeling. Good luck with the surgery! We'll be praying for your little

Jonas.

Krysten

mom to 8 months (mds)

and 2-1/2

Repeat open heart for Jonas...

Hello Everyone!

What joy to see so many new members on here! Welcome to all of you

and blessings to your children and families!

I wanted to give an update on " Sir Jonas " following his heart

catheterization which was performed on 7/6/05. The cardiologist who was

doing the catheterization explained that they were going to check the

leaking tricuspid valve Jonas' regular cardiologist had seen and also

the right ventricular enlargement. After the cath was done, they did

something they called a " Pulmonary Hypertension Study " . They would use

echocardiography to measure the pressure in Jonas' pulmonary arteries

and confirm the diagnosis of Pulmonary Hypertension. (Though they were

pretty certain he had it). He said they would administer nitric oxide

to him and if his pulmonary pressures went down with it, they would know

that Jonas has the type that will respond to medications. This meant

that we would have Jonas around for another 10-20 years. If he did not

respond to this, then the outlook was not very good for our little guy.

The catheterization and study took 3 full hours! I was getting a

bit nervous in my chair waiting, but at 3 hours they came and said they

were finally done and so we went to talk with the doctor. The doctor

started out by saying the he had bad news that he thought in the end

would turn out to be really good news. ( I guess they teach doctors the

art of mixed metaphors in medical school to keep parents off balance!)

He said that Jonas indeed had pretty severe pulmonary hypertension (

reading of 55 in the pulmonary artery, which should be 17 at rest and

never over 30). He also said that Jonas did not respond to the nitric

oxide. However, while this procedure was all going on, the doctor

noticed a fluctuation in the oxygen saturation numbers in the two

chambers of the atrium that was not making any sense to him. The patch

that fixed the hole last year between these chambers was still there,

visible and in tact. & nb sp; These numbers still bugged the doctor and he

felt he was missing something. He called for his best

echocardiographers/ ultrasound people and they came and worked with him

for the third hour. They finally saw it. The patch looked perfect from

every angle but one that they had a hard time seeing. The patch over

the ASD is detached at the bottom. So the bad news is that Jonas has to

go through the exact same open heart surgery again that he had before.

The good news about this is that the doctors feel that if the surgery is

redone, Jonas' Pulmonary pressures will go back to normal, the leak in

the tricuspid valve will quit (or they will fix it while they are in

there), and they expect the heart to shrink back down in the right

ventricle. In effect, they expect a cure for Jonas! We had not been

given any hope before that there was any " cure " for this. Technically

there is not, but if it is being caused by a surgical failure , they can

repeat the surgery and if done before a lot of heart damage has

occurred, they can reverse it!

I nearly fell over in the hallway when the doctor told us this

news. He asked me if I was alright. I said, " I am more than alright, I

am so happy I could nearly fall over! " What a thing to be happy when

someone tells you your child needs an open heart surgery redone! The

doctor told us that until they finally found the leaking area of the

patch, he did not have good news to tell us at all! I said, " I realize

that!! " The date of the surgery is not yet set, but we are expecting it

to be in the coming weeks. I dread watching Jonas have to go through

this again, but it is better than the alternative of being told to make

the best of what time we have left with him!

Bob and I are so relieved that there is hope that this will turn

itself around. was getting worried about Jonas. We tried not to

say TOO much to him about it, but he is a pretty smart and intuitive guy

and he asked me the night before the cath if Jonas could die. I thought

he was worried about the cath, but he said, he was meaning could he die

from what was wrong with him. I told him that he " COULD " die, but ONLY

if God decides that Jonas has served every purpose He has for him and

wants him in heaven as one of his angels. I just told him that God

decides, not the doctors, not the hospitals, not the tests, only Him.

That seemed to cover it, and made feel better. When found

out there was a surgery to possibly make Jonas all better (essentially),

and that it would be done instead of our family vacation being taken...

he asked if we could still take Jonas to the zoo. I said of course, and

he said, " Well, I like to go to the ocean, but there will always be an

ocean to go to, and it is much more important to fix Jonas! " So, to the

zoo we shall go, and all will be well. I have to wonder who is teaching

lessons to whom around here. I so often feel that Bob and I are the

ones learning important life lessons from the boys!

Jonas' " case " will be presented Wednesday to the surgical team and

we will be hearing (soon I hope) about a date for the surgery. Thank

you so much to all of you who were praying for Jonas and keeping our

family in your thoughts. We really appreciate it!

Blessings,

Barb Martz

Mom to Jonas (MDS) 4.5 years & 10

[Guest guest]

,

Thank you, and I will certainly let you all know when this surgery will

take place. I am going to take the first date they will give me. The sooner

they do the surgery, the better chance things will really turn around completely

for him. Thanks for sharing our rejoicing. Take Care...

Barb Martz

Mom to Jonas (MDS) 4.5 yrs. & 10

Re: Repeat open heart for Jonas...

Hallelujah!! I am so joyous for all of you! What a little man you have in

. Please keep us informed of how Sir Jonas is doing!!

Mom to Trevor 13, na (MDS) 9 and Bryson 6

__________________________________________________

[Guest guest]

Barb -

What relief you must be feeling right now - I am doing a cyberspace

dance with joy for you! :-)

Darlene - Mom to and

> ,

> Thank you, and I will certainly let you all know when this surgery will

take place. I am going to take the first date they will give me. The sooner

they do the surgery, the better chance things will really turn around completely

for him. Thanks for sharing our rejoicing. Take Care...

> Barb Martz

> Mom to Jonas (MDS) 4.5 yrs. & 10

> Re: Repeat open heart for Jonas...

>

>

> Hallelujah!! I am so joyous for all of you! What a little man you have in

. Please keep us informed of how Sir Jonas is doing!!

> Mom to Trevor 13, na (MDS) 9 and Bryson 6

>

> __________________________________________________

>

[Guest guest]

HOORAY FOR JONAS!!!!!! I am so happy to hear the good news. I was getting so

anxious waiting to hear how Sir Jonas was doing. We will keep the prayers

going. Alice and Dorothy

Alice

[Guest guest]

Hi Barb and all!!! I am also so happy for the news about Jonas...He is in

our thoughts and prayers!!!! Ross Mom to 8, 3 MDS, and Kirk

the definition of TERRIBLE 2 LOL Don't even get me started about

Potty Training!!!!!

[Guest guest]

Dear ,

Thanks so much for the prayers! I think maybe I can make you feel a little

bit better. Today, I put Jonas down for a nap. I knew I was gambling, because

I put him down in his shorts and snap underneath shirt. (He is still small

enough to wear some snap tuck shirts in 3T). Usually I have to put him in one

piece pajamas which zip up and have feet in them. I cut the feet out and the

arms are cut to be short sleeved because he is so hot all the time. I find

jersey cotton ones at " The Children's Place " clothing stores we have around

here. I have about 6 pairs so I don't go crazy washing them every single day.

I put them on him backwards and zip them up the back. There is a flap with a

snap over the zipper at the top, and he has not been able to remove these.

When he woke up from his nap today, he was very quiet while he disrobed

completely, and removed his soiled diaper, and painted his entire bed clothes

and himself. What a nice treat to clean up this afternoon. I heard him in

there saying " Yuck! " Yeah Jonas, Yuck is right! No more naps without the

" straight jacket jammies " ! They are quick to put on and save me a big mess to

clean up! I should have listened to that inner voice today that said, put on

his pajamas for this nap!

Blessings,

Barb Martz

Mom to Jonas (MDS) 4.5 yrs. & 10

Re: Repeat open heart for Jonas...

Hi Barb and all!!! I am also so happy for the news about Jonas...He is in

our thoughts and prayers!!!! Ross Mom to 8, 3 MDS, and Kirk

the definition of TERRIBLE 2 LOL Don't even get me started about

Potty Training!!!!!

[Guest guest]

Hi Barb,

I am a little late catching up on emails, but I wanted to rejoice with you!

Praise God! Jonas is such a popular little guy on our MDS e-group and we all

love him so much as if he is our own! I know that each of us were holding our

breath with you during that proceedure, and there was a huge sigh of relief

throughout the world with your great news!

I don't think I have ever been so excited about open heart surgery in my life!

LOL Keep us updated! I hope the surgery comes very soon!

Kristy

Martz wrote:

Hello Everyone!

What joy to see so many new members on here! Welcome to all of you and

blessings to your children and families!

I wanted to give an update on " Sir Jonas " following his heart

catheterization which was performed on 7/6/05. The cardiologist who was doing

the catheterization explained that they were going to check the leaking

tricuspid valve Jonas' regular cardiologist had seen and also the right

ventricular enlargement. After the cath was done, they did something they

called a " Pulmonary Hypertension Study " . They would use echocardiography to

measure the pressure in Jonas' pulmonary arteries and confirm the diagnosis of

Pulmonary Hypertension. (Though they were pretty certain he had it). He said

they would administer nitric oxide to him and if his pulmonary pressures went

down with it, they would know that Jonas has the type that will respond to

medications. This meant that we would have Jonas around for another 10-20

years. If he did not respond to this, then the outlook was not very good for

our little guy.

The catheterization and study took 3 full hours! I was getting a bit

nervous in my chair waiting, but at 3 hours they came and said they were finally

done and so we went to talk with the doctor. The doctor started out by saying

the he had bad news that he thought in the end would turn out to be really good

news. ( I guess they teach doctors the art of mixed metaphors in medical school

to keep parents off balance!) He said that Jonas indeed had pretty severe

pulmonary hypertension ( reading of 55 in the pulmonary artery, which should be

17 at rest and never over 30). He also said that Jonas did not respond to the

nitric oxide. However, while this procedure was all going on, the doctor

noticed a fluctuation in the oxygen saturation numbers in the two chambers of

the atrium that was not making any sense to him. The patch that fixed the hole

last year between these chambers was still there, visible and in tact. These

numbers still bugged the doctor and he felt he was missing

something. He called for his best echocardiographers/ ultrasound people and

they came and worked with him for the third hour. They finally saw it. The

patch looked perfect from every angle but one that they had a hard time seeing.

The patch over the ASD is detached at the bottom. So the bad news is that Jonas

has to go through the exact same open heart surgery again that he had before.

The good news about this is that the doctors feel that if the surgery is redone,

Jonas' Pulmonary pressures will go back to normal, the leak in the tricuspid

valve will quit (or they will fix it while they are in there), and they expect

the heart to shrink back down in the right ventricle. In effect, they expect a

cure for Jonas! We had not been given any hope before that there was any " cure "

for this. Technically there is not, but if it is being caused by a surgical

failure, they can repeat the surgery and if done before a lot of heart damage

has occurred, they can reverse it!

I nearly fell over in the hallway when the doctor told us this news. He

asked me if I was alright. I said, " I am more than alright, I am so happy I

could nearly fall over! " What a thing to be happy when someone tells you your

child needs an open heart surgery redone! The doctor told us that until they

finally found the leaking area of the patch, he did not have good news to tell

us at all! I said, " I realize that!! " The date of the surgery is not yet set,

but we are expecting it to be in the coming weeks. I dread watching Jonas have

to go through this again, but it is better than the alternative of being told to

make the best of what time we have left with him!

Bob and I are so relieved that there is hope that this will turn itself

around. was getting worried about Jonas. We tried not to say TOO much

to him about it, but he is a pretty smart and intuitive guy and he asked me the

night before the cath if Jonas could die. I thought he was worried about the

cath, but he said, he was meaning could he die from what was wrong with him. I

told him that he " COULD " die, but ONLY if God decides that Jonas has served

every purpose He has for him and wants him in heaven as one of his angels. I

just told him that God decides, not the doctors, not the hospitals, not the

tests, only Him. That seemed to cover it, and made feel better. When

found out there was a surgery to possibly make Jonas all better

(essentially), and that it would be done instead of our family vacation being

taken... he asked if we could still take Jonas to the zoo. I said of course,

and he said, " Well, I like to go to the ocean, but there will always

be an ocean to go to, and it is much more important to fix Jonas! " So, to the

zoo we shall go, and all will be well. I have to wonder who is teaching lessons

to whom around here. I so often feel that Bob and I are the ones learning

important life lessons from the boys!

Jonas' " case " will be presented Wednesday to the surgical team and we will

be hearing (soon I hope) about a date for the surgery. Thank you so much to all

of you who were praying for Jonas and keeping our family in your thoughts. We

really appreciate it!

Blessings,

Barb Martz

Mom to Jonas (MDS) 4.5 years & 10