MAX 'S PROGRESS

[Guest guest]

Wanted to give you all an update on sweet lil' Maxwell. As some of you may

remember, he is my adorable 5 1/2 month old baby (cHArGEr) born two months early

and we have been at Children's Hospital since birth. He is doing great after

heart surgery and may be coming home sooner than later....YIPPEE!!!

This is my update I just posted on my blog this morning:

Ok, I am told by my doctors not to get TOO excited, but I can't help it! I AM

JUMPING FOR JOY!!! (The staff got quite a kick out of me yesterday during

rounds, because I simply could not contain my excitement!!!) And actually I

just had to leave his room because he was sleeping so peacefully and I just

wanted to pick him and smother him with love and kisses! So I thought I would

use this time to post the good news and let him get his much needed beauty rest.

Max is doing AMAZING!!! He is looking better than ever...truly a miracle!!!

AND...drum roll please...he might, just might, be home in time for Christmas!!!

YES!!! You read right...possibly home for Christmas. It will be tight, but it

might just happen! CAN YOU BELIEVE IT? My baby is coming home soon! Holy

moly!!!! Can you sense our excitement???

Everything isn't perfect by any means...but he has made tremendous progress.

Most importantly, he is officially off of CPAP. That happened yesterday at noon

and so far so good. There are a " few kinks " with his lungs that we still have

to work out and if they get worse then we might be here for several more months,

but I just don't think that will happen. Mommy's intuition is that Max is on

the road to recovery and on the road to Bellingham sooner than later!!! YAY!

I don't want to dismiss the few kinks, because they could be somewhat serious.

First, a portion of his right lung has collapsed because of his shallow

breathing. They did another xray this morning to determine if that is stable or

worsening. We should know shortly. Additionally he continues to breathe fast

but that has slightly improved so we are pleased with the gradual progress.

However, we have to make sure it doesn't worsen as he is off of support for

longer periods of time. His oxygen needs have increased slightly, so we are not

sure about that. However, he will need that for quite some time due to the

pulmonary hypertension issue.

Another issue is that he continues to retain a high level of fluids...despite

the diuretics. This will continue to be an issue, but it does present some

problems. We are watching this very closely because most importantly, it

impacts his breathing.

Lastly, we must determine that he can grow without the ventilator. THIS IS

THE BIGGEE. However, they don't believe they need to keep him in the hospital

to watch this. He could come home and if he doesn't grow adequately, then we

will return to the hospital for breathing support (tracheostomy). This would

allow his lungs to not work as hard.

And of course he needs to continue keeping his O2 up and his CO2 down...which

he is doing well with now.

My pulmonologist warned me yesterday though again...Max is a THIN ICE kid and

if the ice starts to crack, you will have little time before you fall in and

drown. Pretty scary to think about. So he and the other docs have reminded me

time and time again, you will need to be on Maxwell 24/7 oobserving and

detailing every tiny little change to ensure all is well. What a full time

job...lots of reward but LOTS of responsibility with absolutely no breaks. But

I will do whatever is necessary for Max to come home and start living a " normal "

life (well between weekly doctors visits, clinics, daily therapy appointments,

the works!)

So that is the amazingly wonderful news. We still have many " kinks " to work

out...but I am feeling sooooo confident about Maxwell right now. I had this

same positive feeling before heart surgery and I was right, so hopefully my

intuition is right on!

This weekend we will probably graduate from the ICU and head back to the floor

(YIPPEE!!!) and then we will see how he does in the upcoming weeks. HOW

EXCITING IS THIS???????????

Amy McKinley

Mom to sweet Maxwell (CHARGE, 4 months old, 2 months corrected)

---------------------------------

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[Guest guest]

Amy,

I am so happy to hear he is doing so well after heart surgery. After

my daughter had her 1st one I saw a huge difference in her too. I

hope you can get all the kinks out too. It all just takes time. I

know if he can come home for Christmas that would be the great gift

you could ever get!! I hope you get to hold him and cuddle him soon

because I can tell you are so excited and cant wait to pick him up

and squeeze him....hee hee.

Keep up the great work Maxwell!!

Hugs,

Crystal and Eva (7 month charger)

>

> Wanted to give you all an update on sweet lil' Maxwell. As some

of you may remember, he is my adorable 5 1/2 month old baby

(cHArGEr) born two months early and we have been at Children's

Hospital since birth. He is doing great after heart surgery and may

be coming home sooner than later....YIPPEE!!!

>

> This is my update I just posted on my blog this morning:

>

> Ok, I am told by my doctors not to get TOO excited, but I can't

help it! I AM JUMPING FOR JOY!!! (The staff got quite a kick out

of me yesterday during rounds, because I simply could not contain my

excitement!!!) And actually I just had to leave his room because he

was sleeping so peacefully and I just wanted to pick him and smother

him with love and kisses! So I thought I would use this time to

post the good news and let him get his much needed beauty rest.

>

> Max is doing AMAZING!!! He is looking better than ever...truly

a miracle!!! AND...drum roll please...he might, just might, be home

in time for Christmas!!! YES!!! You read right...possibly home for

Christmas. It will be tight, but it might just happen! CAN YOU

BELIEVE IT? My baby is coming home soon! Holy moly!!!! Can you

sense our excitement???

>

> Everything isn't perfect by any means...but he has made

tremendous progress. Most importantly, he is officially off of

CPAP. That happened yesterday at noon and so far so good. There

are a " few kinks " with his lungs that we still have to work out and

if they get worse then we might be here for several more months, but

I just don't think that will happen. Mommy's intuition is that Max

is on the road to recovery and on the road to Bellingham sooner than

later!!! YAY!

>

> I don't want to dismiss the few kinks, because they could be

somewhat serious. First, a portion of his right lung has collapsed

because of his shallow breathing. They did another xray this

morning to determine if that is stable or worsening. We should know

shortly. Additionally he continues to breathe fast but that has

slightly improved so we are pleased with the gradual progress.

However, we have to make sure it doesn't worsen as he is off of

support for longer periods of time. His oxygen needs have increased

slightly, so we are not sure about that. However, he will need that

for quite some time due to the pulmonary hypertension issue.

>

> Another issue is that he continues to retain a high level of

fluids...despite the diuretics. This will continue to be an issue,

but it does present some problems. We are watching this very

closely because most importantly, it impacts his breathing.

>

> Lastly, we must determine that he can grow without the

ventilator. THIS IS THE BIGGEE. However, they don't believe they

need to keep him in the hospital to watch this. He could come home

and if he doesn't grow adequately, then we will return to the

hospital for breathing support (tracheostomy). This would allow his

lungs to not work as hard.

>

> And of course he needs to continue keeping his O2 up and his CO2

down...which he is doing well with now.

>

> My pulmonologist warned me yesterday though again...Max is a

THIN ICE kid and if the ice starts to crack, you will have little

time before you fall in and drown. Pretty scary to think about. So

he and the other docs have reminded me time and time again, you will

need to be on Maxwell 24/7 oobserving and detailing every tiny

little change to ensure all is well. What a full time job...lots of

reward but LOTS of responsibility with absolutely no breaks. But I

will do whatever is necessary for Max to come home and start living

a " normal " life (well between weekly doctors visits, clinics, daily

therapy appointments, the works!)

>

> So that is the amazingly wonderful news. We still have

many " kinks " to work out...but I am feeling sooooo confident about

Maxwell right now. I had this same positive feeling before heart

surgery and I was right, so hopefully my intuition is right on!

>

> This weekend we will probably graduate from the ICU and head

back to the floor (YIPPEE!!!) and then we will see how he does in

the upcoming weeks. HOW EXCITING IS THIS???????????

>

>

>

> Amy McKinley

> Mom to sweet Maxwell (CHARGE, 4 months old, 2 months corrected)

>

> ---------------------------------

> Yahoo! Personals

> Let fate take it's course directly to your email.

> See who's waiting for you Yahoo! Personals

>

>

[Guest guest]

Amy,

how wonderful!! I am banking on your Mommy intuition, too!!

pam

[Guest guest]

Amy,

I am so thrilled for Max and all of you. Hold him, love him and yes kiss

his entire body. Then when you're done kiss him some more.

Happy thoughts for all of you. I'll be waiting on pins and needles to hear

more good news!

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

[Guest guest]

YEAH Amy!!!!!!!!!!!!!!!!

I know your intuition is on!!! Maxwell will be home for Christmas.

I was given slim hope for to be home by Christmas but guess what Dec

17,1997 at 11:18 we left the hospital got into a limo and we were home by

noon..

Good thoughts to you and your family

Ellen mom to 8

[Guest guest]

Amy,

That is very exciting! Keeping just about everything I can crossed for you

and Max. I remember 's homecoming 5 years ago couldn't come quickly

enough. We were ready to do battle with the paed to get her home (only a

little one needed) and we were also ready to have our living room look like

a ward room for the medical equipment. Every little bit of it was worth it,

even the panics over the stupid apnoea monitor accidentally going off very

regularly because the little horror moved the sensor!

Here's hoping Max makes it home for Xmas and we look forward to the news.

Flo

>

>

> THIS IS THE BIGGEE. However, they don't believe they need to keep him in

> the hospital to watch this. He could come home

[Guest guest]

Amy,

I can feel your excitment all the way over here in Australia.... I am so

excited for you... keep up the good work Maxwell.

Lot of hugs

mum to Hayley 20months(in hospital with heart failure epsiodes) :-(

Wanted to give you all an update on sweet lil' Maxwell. As some of you

> may remember, he is my adorable 5 1/2 month old baby (cHArGEr) born two

> months early and we have been at Children's Hospital since birth. He is

> doing great after heart surgery and may be coming home sooner than

> later....YIPPEE!!!

>

> This is my update I just posted on my blog this morning:

>

> Ok, I am told by my doctors not to get TOO excited, but I can't help it!

> I AM JUMPING FOR JOY!!! (The staff got quite a kick out of me

> yesterday during rounds, because I simply could not contain my

> excitement!!!) And actually I just had to leave his room because he was

> sleeping so peacefully and I just wanted to pick him and smother him

> with love and kisses! So I thought I would use this time to post the

> good news and let him get his much needed beauty rest.

>

> Max is doing AMAZING!!! He is looking better than ever...truly a

> miracle!!! AND...drum roll please...he might, just might, be home in

> time for Christmas!!! YES!!! You read right...possibly home for

> Christmas. It will be tight, but it might just happen! CAN YOU BELIEVE

> IT? My baby is coming home soon! Holy moly!!!! Can you sense our

> excitement???

>

> Everything isn't perfect by any means...but he has made tremendous

> progress. Most importantly, he is officially off of CPAP. That

> happened yesterday at noon and so far so good. There are a " few kinks "

> with his lungs that we still have to work out and if they get worse then

> we might be here for several more months, but I just don't think that

> will happen. Mommy's intuition is that Max is on the road to recovery

> and on the road to Bellingham sooner than later!!! YAY!

>

> I don't want to dismiss the few kinks, because they could be somewhat

> serious. First, a portion of his right lung has collapsed because of

> his shallow breathing. They did another xray this morning to determine

> if that is stable or worsening. We should know shortly. Additionally

> he continues to breathe fast but that has slightly improved so we are

> pleased with the gradual progress. However, we have to make sure it

> doesn't worsen as he is off of support for longer periods of time. His

> oxygen needs have increased slightly, so we are not sure about that.

> However, he will need that for quite some time due to the pulmonary

> hypertension issue.

>

> Another issue is that he continues to retain a high level of

> fluids...despite the diuretics. This will continue to be an issue, but

> it does present some problems. We are watching this very closely

> because most importantly, it impacts his breathing.

>

> Lastly, we must determine that he can grow without the ventilator. THIS

> IS THE BIGGEE. However, they don't believe they need to keep him in the

> hospital to watch this. He could come home and if he doesn't grow

> adequately, then we will return to the hospital for breathing support

> (tracheostomy). This would allow his lungs to not work as hard.

>

> And of course he needs to continue keeping his O2 up and his CO2

> down...which he is doing well with now.

>

> My pulmonologist warned me yesterday though again...Max is a THIN ICE

> kid and if the ice starts to crack, you will have little time before you

> fall in and drown. Pretty scary to think about. So he and the other

> docs have reminded me time and time again, you will need to be on

> Maxwell 24/7 oobserving and detailing every tiny little change to ensure

> all is well. What a full time job...lots of reward but LOTS of

> responsibility with absolutely no breaks. But I will do whatever is

> necessary for Max to come home and start living a " normal " life (well

> between weekly doctors visits, clinics, daily therapy appointments, the

> works!)

>

> So that is the amazingly wonderful news. We still have many " kinks " to

> work out...but I am feeling sooooo confident about Maxwell right now. I

> had this same positive feeling before heart surgery and I was right, so

> hopefully my intuition is right on!

>

> This weekend we will probably graduate from the ICU and head back to the

> floor (YIPPEE!!!) and then we will see how he does in the upcoming

> weeks. HOW EXCITING IS THIS???????????

>

>

>

> Amy McKinley

> Mom to sweet Maxwell (CHARGE, 4 months old, 2 months corrected)

>

> ---------------------------------

> Yahoo! Personals

> Let fate take it's course directly to your email.

> See who's waiting for you Yahoo! Personals

>

>

[Guest guest]

yay hes going good thats great news mummy minds are more acurate than

doctors hugs ellen

>

> Amy,

>

> I am so thrilled for Max and all of you. Hold him, love him and yes kiss

> his entire body. Then when you're done kiss him some more.

>

> Happy thoughts for all of you. I'll be waiting on pins and needles to

> hear

> more good news!

>

>

> Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

>

>

>

[Guest guest]

Amy-

That is incredibly exciting! I love reading your posts because you do such a

great job of sharing exactly what you're feeling! I hope you and Max get the

best Christmas present ever -- a Christmas at home together!!

Michele W

Aubrie's mom