Re: update on JD and Olivia

[Guest guest]

great things are goign ok

>

> It has been awhile since and I have sent an email out about the

> kids. I

> first want to start off by saying thank you so much for all of the

> prayers,

> concerns, and the help of those that have been coming up to the hospital

> to sit

> with JD. Sometimes we just need someone to talk to and get out our

> frustrations. and I have just decided that when JD comes home (maybe

> April or

> May), he will have 24 hour nursing care for a little while ,.and that the

> room is

> not big enough for both JD and Olivia, plus the nurse and what ever else

> he

> may need. So the guest room is right across the room from JD and that we

> are

> going to take the bed out and put Olivia's bed (which is still in our

> bedroom) in

> the room. This will eventually be her room when she gets older. and

> I

> already have a plan of action of where we are going to change JD's trach

> ties,

> trach..ect.

> JD has had his ups and downs lately. He would have good days and some bad

> days. There were days that I would see him get frustrated and can't do

> anything

> but cry. One day I just stood outside his room balling my eyes out and the

> intern came by to calm me down and found me a doctor to update me. I think

> the

> attitudes in the nurse's changed as well when they saw a mom crying for

> her son.

> JD also has a really bad, I mean the worst ever, diaper rash. They had to

> call

> in a wound specialist to come by and check on him. I have already gotten

> the

> hang of how to take care of my son. As soon as I get off of work, I go and

> get

> JD's food ready, he is now up to 3 oz. I put it in the bag and start the

> machine up. He still gets fed over an hour time. During this time I check

> his

> diaper for changing. Sometimes he sleeps and sometimes he is awake moving

> around.

> Around 4:30 the nurse or RT will come in and ask if I am ready for his

> trach

> tie change. This is my favorite part, I just feel closer to JD when I am

> doing

> this. I always have everything ready to go, I even cut the ties the right

> length for him. I like to make sure we have everything ready before we

> begin.

> After we change the ties then it is time to suction the trach, nose (which

> he

> really hates a lot; can't blame him) and then his mouth. Usually this is

> also the

> time for his breathing treatment. If you think this is a lot now, his

> morning

> is worse when he has OT, PT, Speech Therapy, Child Life..ect. After we are

> finished he is usually worn out and ready to sleep. Last week, I got the

> scare

> again. Somehow, JD got his trach out. I think this might have scared him

> and he

> didn't know what to do, he was receiving OT.They had to call Code Blue,

> all

> they had to do was bag him. I called when this was going on and the nurse

> could

> not come to the phone and was told that I needed to call back. I heard the

> alarms, but just asked if everything was okay. I was just told to call

> back in 10

> minutes, please. So I called back and was told what had happened. I left

> work

> and get there as fast as I could, came into the room and saw JD hanging

> out

> just looking better than ever. I told him that he sure knows how to get a

> crowd. He was probably thinking " hey mom, what's going on " While I was

> suctioning

> him, I went to his nose and got the shock of my life. My son slapped my

> hand

> out of the way. I was speechless, I can't believe my son just did that. JD

> has a

> way of having the nurses come in when he sets off the alarms. I was

> holding

> him and he kept grabbing at one of the monitors and he was awake, he got

> it off

> and set off the alarm. As soon as the nurses came in, he went to sleep, he

> is

> probably thinking that if they think he is asleep then they won't think he

> did anything wrong. He is too funny. They were worried last week because

> JD kept

> getting his heart rate up, running fever..ect. Finally on Friday they

> realized that his diaper rash was getting worse that could be the answer.

> That

> afternoon he was naked and very happy.

> Olivia is getting so beautiful. We got her a bumbo seat and she loves it.

> She

> now weighs 12lbs. She is making off sorts of noises and smiling. She does

> cry

> when she doesn't get her way. She got to see her brother a couple of weeks

> ago. She grabbed his face and he got mad at her and poked her in the eye.

> Both

> were crying and kicking each other. They had to separate for a while.

> Olivia is

> very observant and likes to watch her brother get his breathing

> treatments.

> She is still rolling over and playing with her toys.

> Well, that is enough for now, and I really appreciate what everybody

> has done.

> Take Care

> , , Olivia and JD 5 months.

>

>

>

[Guest guest]

great things are goign ok

>

> It has been awhile since and I have sent an email out about the

> kids. I

> first want to start off by saying thank you so much for all of the

> prayers,

> concerns, and the help of those that have been coming up to the hospital

> to sit

> with JD. Sometimes we just need someone to talk to and get out our

> frustrations. and I have just decided that when JD comes home (maybe

> April or

> May), he will have 24 hour nursing care for a little while ,.and that the

> room is

> not big enough for both JD and Olivia, plus the nurse and what ever else

> he

> may need. So the guest room is right across the room from JD and that we

> are

> going to take the bed out and put Olivia's bed (which is still in our

> bedroom) in

> the room. This will eventually be her room when she gets older. and

> I

> already have a plan of action of where we are going to change JD's trach

> ties,

> trach..ect.

> JD has had his ups and downs lately. He would have good days and some bad

> days. There were days that I would see him get frustrated and can't do

> anything

> but cry. One day I just stood outside his room balling my eyes out and the

> intern came by to calm me down and found me a doctor to update me. I think

> the

> attitudes in the nurse's changed as well when they saw a mom crying for

> her son.

> JD also has a really bad, I mean the worst ever, diaper rash. They had to

> call

> in a wound specialist to come by and check on him. I have already gotten

> the

> hang of how to take care of my son. As soon as I get off of work, I go and

> get

> JD's food ready, he is now up to 3 oz. I put it in the bag and start the

> machine up. He still gets fed over an hour time. During this time I check

> his

> diaper for changing. Sometimes he sleeps and sometimes he is awake moving

> around.

> Around 4:30 the nurse or RT will come in and ask if I am ready for his

> trach

> tie change. This is my favorite part, I just feel closer to JD when I am

> doing

> this. I always have everything ready to go, I even cut the ties the right

> length for him. I like to make sure we have everything ready before we

> begin.

> After we change the ties then it is time to suction the trach, nose (which

> he

> really hates a lot; can't blame him) and then his mouth. Usually this is

> also the

> time for his breathing treatment. If you think this is a lot now, his

> morning

> is worse when he has OT, PT, Speech Therapy, Child Life..ect. After we are

> finished he is usually worn out and ready to sleep. Last week, I got the

> scare

> again. Somehow, JD got his trach out. I think this might have scared him

> and he

> didn't know what to do, he was receiving OT.They had to call Code Blue,

> all

> they had to do was bag him. I called when this was going on and the nurse

> could

> not come to the phone and was told that I needed to call back. I heard the

> alarms, but just asked if everything was okay. I was just told to call

> back in 10

> minutes, please. So I called back and was told what had happened. I left

> work

> and get there as fast as I could, came into the room and saw JD hanging

> out

> just looking better than ever. I told him that he sure knows how to get a

> crowd. He was probably thinking " hey mom, what's going on " While I was

> suctioning

> him, I went to his nose and got the shock of my life. My son slapped my

> hand

> out of the way. I was speechless, I can't believe my son just did that. JD

> has a

> way of having the nurses come in when he sets off the alarms. I was

> holding

> him and he kept grabbing at one of the monitors and he was awake, he got

> it off

> and set off the alarm. As soon as the nurses came in, he went to sleep, he

> is

> probably thinking that if they think he is asleep then they won't think he

> did anything wrong. He is too funny. They were worried last week because

> JD kept

> getting his heart rate up, running fever..ect. Finally on Friday they

> realized that his diaper rash was getting worse that could be the answer.

> That

> afternoon he was naked and very happy.

> Olivia is getting so beautiful. We got her a bumbo seat and she loves it.

> She

> now weighs 12lbs. She is making off sorts of noises and smiling. She does

> cry

> when she doesn't get her way. She got to see her brother a couple of weeks

> ago. She grabbed his face and he got mad at her and poked her in the eye.

> Both

> were crying and kicking each other. They had to separate for a while.

> Olivia is

> very observant and likes to watch her brother get his breathing

> treatments.

> She is still rolling over and playing with her toys.

> Well, that is enough for now, and I really appreciate what everybody

> has done.

> Take Care

> , , Olivia and JD 5 months.

>

>

>

[Guest guest]

great things are goign ok

>

> It has been awhile since and I have sent an email out about the

> kids. I

> first want to start off by saying thank you so much for all of the

> prayers,

> concerns, and the help of those that have been coming up to the hospital

> to sit

> with JD. Sometimes we just need someone to talk to and get out our

> frustrations. and I have just decided that when JD comes home (maybe

> April or

> May), he will have 24 hour nursing care for a little while ,.and that the

> room is

> not big enough for both JD and Olivia, plus the nurse and what ever else

> he

> may need. So the guest room is right across the room from JD and that we

> are

> going to take the bed out and put Olivia's bed (which is still in our

> bedroom) in

> the room. This will eventually be her room when she gets older. and

> I

> already have a plan of action of where we are going to change JD's trach

> ties,

> trach..ect.

> JD has had his ups and downs lately. He would have good days and some bad

> days. There were days that I would see him get frustrated and can't do

> anything

> but cry. One day I just stood outside his room balling my eyes out and the

> intern came by to calm me down and found me a doctor to update me. I think

> the

> attitudes in the nurse's changed as well when they saw a mom crying for

> her son.

> JD also has a really bad, I mean the worst ever, diaper rash. They had to

> call

> in a wound specialist to come by and check on him. I have already gotten

> the

> hang of how to take care of my son. As soon as I get off of work, I go and

> get

> JD's food ready, he is now up to 3 oz. I put it in the bag and start the

> machine up. He still gets fed over an hour time. During this time I check

> his

> diaper for changing. Sometimes he sleeps and sometimes he is awake moving

> around.

> Around 4:30 the nurse or RT will come in and ask if I am ready for his

> trach

> tie change. This is my favorite part, I just feel closer to JD when I am

> doing

> this. I always have everything ready to go, I even cut the ties the right

> length for him. I like to make sure we have everything ready before we

> begin.

> After we change the ties then it is time to suction the trach, nose (which

> he

> really hates a lot; can't blame him) and then his mouth. Usually this is

> also the

> time for his breathing treatment. If you think this is a lot now, his

> morning

> is worse when he has OT, PT, Speech Therapy, Child Life..ect. After we are

> finished he is usually worn out and ready to sleep. Last week, I got the

> scare

> again. Somehow, JD got his trach out. I think this might have scared him

> and he

> didn't know what to do, he was receiving OT.They had to call Code Blue,

> all

> they had to do was bag him. I called when this was going on and the nurse

> could

> not come to the phone and was told that I needed to call back. I heard the

> alarms, but just asked if everything was okay. I was just told to call

> back in 10

> minutes, please. So I called back and was told what had happened. I left

> work

> and get there as fast as I could, came into the room and saw JD hanging

> out

> just looking better than ever. I told him that he sure knows how to get a

> crowd. He was probably thinking " hey mom, what's going on " While I was

> suctioning

> him, I went to his nose and got the shock of my life. My son slapped my

> hand

> out of the way. I was speechless, I can't believe my son just did that. JD

> has a

> way of having the nurses come in when he sets off the alarms. I was

> holding

> him and he kept grabbing at one of the monitors and he was awake, he got

> it off

> and set off the alarm. As soon as the nurses came in, he went to sleep, he

> is

> probably thinking that if they think he is asleep then they won't think he

> did anything wrong. He is too funny. They were worried last week because

> JD kept

> getting his heart rate up, running fever..ect. Finally on Friday they

> realized that his diaper rash was getting worse that could be the answer.

> That

> afternoon he was naked and very happy.

> Olivia is getting so beautiful. We got her a bumbo seat and she loves it.

> She

> now weighs 12lbs. She is making off sorts of noises and smiling. She does

> cry

> when she doesn't get her way. She got to see her brother a couple of weeks

> ago. She grabbed his face and he got mad at her and poked her in the eye.

> Both

> were crying and kicking each other. They had to separate for a while.

> Olivia is

> very observant and likes to watch her brother get his breathing

> treatments.

> She is still rolling over and playing with her toys.

> Well, that is enough for now, and I really appreciate what everybody

> has done.

> Take Care

> , , Olivia and JD 5 months.

>

>

>

[Guest guest]

Dear ,

How well U are handling all the demands on Ur time! DJ is obviously finding

his own personality-a very clever little fellow, isn't he, and so very aware.

I am so very happy and relieved to hear U will have that nursing care. It is

just so essential.

I found a trick for the trach ties-if all other things are the same as they

were 20 yrs ago,

and the ties are still that soft fabric.

I would cut up a bunch to length- angled at the ends, put a little white

glue (elmers glue) on my finger tips, and put the glue on both ends of the

tie-and hang them over a hanger to dry.

It's so much easier to get it thru the holes.

May all Ur news continue to be wonderful.

[Guest guest]

, Thanks so much for the update on your two little ones. I

often wonder what is going on to those who we haven't heard from in a

while, but I also often need to take breaks from the list due to life

happening!

I wanted to mention a few things about the trach. My daughter, Carmen

has had a trach since 3 weeks old and is now 20 months and still has

it. We have always used Posey velcro trach ties and they are really

wonderful. You don't have to cut them or tie them and they are soft,

comfortable foam/cotton. I just thought I would mention it because I

can't imagine having to cut and tie the old fashioned ties they used

to use. Let me know if you need a stock # on these. You may be very

happy with what you are using, but I just wanted to mention it.

Also, Carmen pulled her trach out often when she was around that age,

and sometimes, the trach just popped out because of her arching her

back to roll over. So, we ended up changing from a bivona trach to a

shiley. The shiley was much more comfortable for Carmen and it has a

firmer tube, which didn't come out easily like the bivona. The only

nice thing about Carmen pulling her trach out was that I was able to

hear her voice finally.

Take care and God Bless all of you! , mom to Zachary 4.5

years and Carmen 20 months (CHARGE)

>

> It has been awhile since and I have sent an email out about

the kids. I

> first want to start off by saying thank you so much for all of the

prayers,

> concerns, and the help of those that have been coming up to the

hospital to sit

> with JD. Sometimes we just need someone to talk to and get out our

> frustrations. and I have just decided that when JD comes home

(maybe April or

> May), he will have 24 hour nursing care for a little while ,.and

that the room is

> not big enough for both JD and Olivia, plus the nurse and what ever

else he

> may need. So the guest room is right across the room from JD and

that we are

> going to take the bed out and put Olivia's bed (which is still in

our bedroom) in

> the room. This will eventually be her room when she gets older.

and I

> already have a plan of action of where we are going to change JD's

trach ties,

> trach..ect.

> JD has had his ups and downs lately. He would have good days and

some bad

> days. There were days that I would see him get frustrated and can't

do anything

> but cry. One day I just stood outside his room balling my eyes out

and the

> intern came by to calm me down and found me a doctor to update me. I

think the

> attitudes in the nurse's changed as well when they saw a mom crying

for her son.

> JD also has a really bad, I mean the worst ever, diaper rash. They

had to call

> in a wound specialist to come by and check on him. I have already

gotten the

> hang of how to take care of my son. As soon as I get off of work, I

go and get

> JD's food ready, he is now up to 3 oz. I put it in the bag and start

the

> machine up. He still gets fed over an hour time. During this time I

check his

> diaper for changing. Sometimes he sleeps and sometimes he is awake

moving around.

> Around 4:30 the nurse or RT will come in and ask if I am ready for

his trach

> tie change. This is my favorite part, I just feel closer to JD when

I am doing

> this. I always have everything ready to go, I even cut the ties the

right

> length for him. I like to make sure we have everything ready before

we begin.

> After we change the ties then it is time to suction the trach, nose

(which he

> really hates a lot; can't blame him) and then his mouth. Usually

this is also the

> time for his breathing treatment. If you think this is a lot now,

his morning

> is worse when he has OT, PT, Speech Therapy, Child Life..ect. After

we are

> finished he is usually worn out and ready to sleep. Last week, I got

the scare

> again. Somehow, JD got his trach out. I think this might have scared

him and he

> didn't know what to do, he was receiving OT.They had to call Code

Blue, all

> they had to do was bag him. I called when this was going on and the

nurse could

> not come to the phone and was told that I needed to call back. I

heard the

> alarms, but just asked if everything was okay. I was just told to

call back in 10

> minutes, please. So I called back and was told what had happened. I

left work

> and get there as fast as I could, came into the room and saw JD

hanging out

> just looking better than ever. I told him that he sure knows how to

get a

> crowd. He was probably thinking " hey mom, what's going on " While I

was suctioning

> him, I went to his nose and got the shock of my life. My son slapped

my hand

> out of the way. I was speechless, I can't believe my son just did

that. JD has a

> way of having the nurses come in when he sets off the alarms. I was

holding

> him and he kept grabbing at one of the monitors and he was awake, he

got it off

> and set off the alarm. As soon as the nurses came in, he went to

sleep, he is

> probably thinking that if they think he is asleep then they won't

think he

> did anything wrong. He is too funny. They were worried last week

because JD kept

> getting his heart rate up, running fever..ect. Finally on Friday they

> realized that his diaper rash was getting worse that could be the

answer. That

> afternoon he was naked and very happy.

> Olivia is getting so beautiful. We got her a bumbo seat and she

loves it. She

> now weighs 12lbs. She is making off sorts of noises and smiling. She

does cry

> when she doesn't get her way. She got to see her brother a couple of

weeks

> ago. She grabbed his face and he got mad at her and poked her in the

eye. Both

> were crying and kicking each other. They had to separate for a

while. Olivia is

> very observant and likes to watch her brother get his breathing

treatments.

> She is still rolling over and playing with her toys.

> Well, that is enough for now, and I really appreciate what

everybody

> has done.

> Take Care

> , , Olivia and JD 5 months.

>

>

>

[Guest guest]

, Thanks so much for the update on your two little ones. I

often wonder what is going on to those who we haven't heard from in a

while, but I also often need to take breaks from the list due to life

happening!

I wanted to mention a few things about the trach. My daughter, Carmen

has had a trach since 3 weeks old and is now 20 months and still has

it. We have always used Posey velcro trach ties and they are really

wonderful. You don't have to cut them or tie them and they are soft,

comfortable foam/cotton. I just thought I would mention it because I

can't imagine having to cut and tie the old fashioned ties they used

to use. Let me know if you need a stock # on these. You may be very

happy with what you are using, but I just wanted to mention it.

Also, Carmen pulled her trach out often when she was around that age,

and sometimes, the trach just popped out because of her arching her

back to roll over. So, we ended up changing from a bivona trach to a

shiley. The shiley was much more comfortable for Carmen and it has a

firmer tube, which didn't come out easily like the bivona. The only

nice thing about Carmen pulling her trach out was that I was able to

hear her voice finally.

Take care and God Bless all of you! , mom to Zachary 4.5

years and Carmen 20 months (CHARGE)

>

> It has been awhile since and I have sent an email out about

the kids. I

> first want to start off by saying thank you so much for all of the

prayers,

> concerns, and the help of those that have been coming up to the

hospital to sit

> with JD. Sometimes we just need someone to talk to and get out our

> frustrations. and I have just decided that when JD comes home

(maybe April or

> May), he will have 24 hour nursing care for a little while ,.and

that the room is

> not big enough for both JD and Olivia, plus the nurse and what ever

else he

> may need. So the guest room is right across the room from JD and

that we are

> going to take the bed out and put Olivia's bed (which is still in

our bedroom) in

> the room. This will eventually be her room when she gets older.

and I

> already have a plan of action of where we are going to change JD's

trach ties,

> trach..ect.

> JD has had his ups and downs lately. He would have good days and

some bad

> days. There were days that I would see him get frustrated and can't

do anything

> but cry. One day I just stood outside his room balling my eyes out

and the

> intern came by to calm me down and found me a doctor to update me. I

think the

> attitudes in the nurse's changed as well when they saw a mom crying

for her son.

> JD also has a really bad, I mean the worst ever, diaper rash. They

had to call

> in a wound specialist to come by and check on him. I have already

gotten the

> hang of how to take care of my son. As soon as I get off of work, I

go and get

> JD's food ready, he is now up to 3 oz. I put it in the bag and start

the

> machine up. He still gets fed over an hour time. During this time I

check his

> diaper for changing. Sometimes he sleeps and sometimes he is awake

moving around.

> Around 4:30 the nurse or RT will come in and ask if I am ready for

his trach

> tie change. This is my favorite part, I just feel closer to JD when

I am doing

> this. I always have everything ready to go, I even cut the ties the

right

> length for him. I like to make sure we have everything ready before

we begin.

> After we change the ties then it is time to suction the trach, nose

(which he

> really hates a lot; can't blame him) and then his mouth. Usually

this is also the

> time for his breathing treatment. If you think this is a lot now,

his morning

> is worse when he has OT, PT, Speech Therapy, Child Life..ect. After

we are

> finished he is usually worn out and ready to sleep. Last week, I got

the scare

> again. Somehow, JD got his trach out. I think this might have scared

him and he

> didn't know what to do, he was receiving OT.They had to call Code

Blue, all

> they had to do was bag him. I called when this was going on and the

nurse could

> not come to the phone and was told that I needed to call back. I

heard the

> alarms, but just asked if everything was okay. I was just told to

call back in 10

> minutes, please. So I called back and was told what had happened. I

left work

> and get there as fast as I could, came into the room and saw JD

hanging out

> just looking better than ever. I told him that he sure knows how to

get a

> crowd. He was probably thinking " hey mom, what's going on " While I

was suctioning

> him, I went to his nose and got the shock of my life. My son slapped

my hand

> out of the way. I was speechless, I can't believe my son just did

that. JD has a

> way of having the nurses come in when he sets off the alarms. I was

holding

> him and he kept grabbing at one of the monitors and he was awake, he

got it off

> and set off the alarm. As soon as the nurses came in, he went to

sleep, he is

> probably thinking that if they think he is asleep then they won't

think he

> did anything wrong. He is too funny. They were worried last week

because JD kept

> getting his heart rate up, running fever..ect. Finally on Friday they

> realized that his diaper rash was getting worse that could be the

answer. That

> afternoon he was naked and very happy.

> Olivia is getting so beautiful. We got her a bumbo seat and she

loves it. She

> now weighs 12lbs. She is making off sorts of noises and smiling. She

does cry

> when she doesn't get her way. She got to see her brother a couple of

weeks

> ago. She grabbed his face and he got mad at her and poked her in the

eye. Both

> were crying and kicking each other. They had to separate for a

while. Olivia is

> very observant and likes to watch her brother get his breathing

treatments.

> She is still rolling over and playing with her toys.

> Well, that is enough for now, and I really appreciate what

everybody

> has done.

> Take Care

> , , Olivia and JD 5 months.

>

>

>

[Guest guest]

, Thanks so much for the update on your two little ones. I

often wonder what is going on to those who we haven't heard from in a

while, but I also often need to take breaks from the list due to life

happening!

I wanted to mention a few things about the trach. My daughter, Carmen

has had a trach since 3 weeks old and is now 20 months and still has

it. We have always used Posey velcro trach ties and they are really

wonderful. You don't have to cut them or tie them and they are soft,

comfortable foam/cotton. I just thought I would mention it because I

can't imagine having to cut and tie the old fashioned ties they used

to use. Let me know if you need a stock # on these. You may be very

happy with what you are using, but I just wanted to mention it.

Also, Carmen pulled her trach out often when she was around that age,

and sometimes, the trach just popped out because of her arching her

back to roll over. So, we ended up changing from a bivona trach to a

shiley. The shiley was much more comfortable for Carmen and it has a

firmer tube, which didn't come out easily like the bivona. The only

nice thing about Carmen pulling her trach out was that I was able to

hear her voice finally.

Take care and God Bless all of you! , mom to Zachary 4.5

years and Carmen 20 months (CHARGE)

>

> It has been awhile since and I have sent an email out about

the kids. I

> first want to start off by saying thank you so much for all of the

prayers,

> concerns, and the help of those that have been coming up to the

hospital to sit

> with JD. Sometimes we just need someone to talk to and get out our

> frustrations. and I have just decided that when JD comes home

(maybe April or

> May), he will have 24 hour nursing care for a little while ,.and

that the room is

> not big enough for both JD and Olivia, plus the nurse and what ever

else he

> may need. So the guest room is right across the room from JD and

that we are

> going to take the bed out and put Olivia's bed (which is still in

our bedroom) in

> the room. This will eventually be her room when she gets older.

and I

> already have a plan of action of where we are going to change JD's

trach ties,

> trach..ect.

> JD has had his ups and downs lately. He would have good days and

some bad

> days. There were days that I would see him get frustrated and can't

do anything

> but cry. One day I just stood outside his room balling my eyes out

and the

> intern came by to calm me down and found me a doctor to update me. I

think the

> attitudes in the nurse's changed as well when they saw a mom crying

for her son.

> JD also has a really bad, I mean the worst ever, diaper rash. They

had to call

> in a wound specialist to come by and check on him. I have already

gotten the

> hang of how to take care of my son. As soon as I get off of work, I

go and get

> JD's food ready, he is now up to 3 oz. I put it in the bag and start

the

> machine up. He still gets fed over an hour time. During this time I

check his

> diaper for changing. Sometimes he sleeps and sometimes he is awake

moving around.

> Around 4:30 the nurse or RT will come in and ask if I am ready for

his trach

> tie change. This is my favorite part, I just feel closer to JD when

I am doing

> this. I always have everything ready to go, I even cut the ties the

right

> length for him. I like to make sure we have everything ready before

we begin.

> After we change the ties then it is time to suction the trach, nose

(which he

> really hates a lot; can't blame him) and then his mouth. Usually

this is also the

> time for his breathing treatment. If you think this is a lot now,

his morning

> is worse when he has OT, PT, Speech Therapy, Child Life..ect. After

we are

> finished he is usually worn out and ready to sleep. Last week, I got

the scare

> again. Somehow, JD got his trach out. I think this might have scared

him and he

> didn't know what to do, he was receiving OT.They had to call Code

Blue, all

> they had to do was bag him. I called when this was going on and the

nurse could

> not come to the phone and was told that I needed to call back. I

heard the

> alarms, but just asked if everything was okay. I was just told to

call back in 10

> minutes, please. So I called back and was told what had happened. I

left work

> and get there as fast as I could, came into the room and saw JD

hanging out

> just looking better than ever. I told him that he sure knows how to

get a

> crowd. He was probably thinking " hey mom, what's going on " While I

was suctioning

> him, I went to his nose and got the shock of my life. My son slapped

my hand

> out of the way. I was speechless, I can't believe my son just did

that. JD has a

> way of having the nurses come in when he sets off the alarms. I was

holding

> him and he kept grabbing at one of the monitors and he was awake, he

got it off

> and set off the alarm. As soon as the nurses came in, he went to

sleep, he is

> probably thinking that if they think he is asleep then they won't

think he

> did anything wrong. He is too funny. They were worried last week

because JD kept

> getting his heart rate up, running fever..ect. Finally on Friday they

> realized that his diaper rash was getting worse that could be the

answer. That

> afternoon he was naked and very happy.

> Olivia is getting so beautiful. We got her a bumbo seat and she

loves it. She

> now weighs 12lbs. She is making off sorts of noises and smiling. She

does cry

> when she doesn't get her way. She got to see her brother a couple of

weeks

> ago. She grabbed his face and he got mad at her and poked her in the

eye. Both

> were crying and kicking each other. They had to separate for a

while. Olivia is

> very observant and likes to watch her brother get his breathing

treatments.

> She is still rolling over and playing with her toys.

> Well, that is enough for now, and I really appreciate what

everybody

> has done.

> Take Care

> , , Olivia and JD 5 months.

>

>

>

[Guest guest]

Thanks as always for the update. JD sounds like he has the CHARGE attitude!

I'm glad to hear how comfortable you are getting with his care and how

you've made connections with him in spite of all the " stuff " in the way. I

can't believe how long he's been in the hospital -- can't imagine how that

has changed your lives. But you sure are rising to the challenge and making

the best of a very difficult situation.

It sounds like Olivia is also becoming quite a charmer and doing so well!

I'm sure she'll love her own room. Who wants to share with a yucky ol' boy

even if he is your brother!

Keep up your strength and perseverance. You are an awesome family!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

,

I was so glad to hear an update on your little guy, your story of

how he sets off the alarms were so funny. I think they all like to

make sure the nurses are on their toes...lol. Eva would move around

so much she would move her leads and make her alarms go off. The

nurses would tell my husband not to watch the monitors so much and

watch the baby. if she is moving around and happy she is fine...lol.

I hope he gets to come home soon and I know you wil all do fine and

I am sure his sister would love to watch him get suctioned all the

time. She sounds like she is doing great and I am glad everything is

ok.

Hope to hear more again soon.

Hugs,

Crystal and Eva(10 month charger)

>

> It has been awhile since and I have sent an email out about

the kids. I

> first want to start off by saying thank you so much for all of the

prayers,

> concerns, and the help of those that have been coming up to the

hospital to sit

> with JD. Sometimes we just need someone to talk to and get out our

> frustrations. and I have just decided that when JD comes

home (maybe April or

> May), he will have 24 hour nursing care for a little while ,.and

that the room is

> not big enough for both JD and Olivia, plus the nurse and what

ever else he

> may need. So the guest room is right across the room from JD and

that we are

> going to take the bed out and put Olivia's bed (which is still in

our bedroom) in

> the room. This will eventually be her room when she gets older.

and I

> already have a plan of action of where we are going to change JD's

trach ties,

> trach..ect.

> JD has had his ups and downs lately. He would have good days and

some bad

> days. There were days that I would see him get frustrated and

can't do anything

> but cry. One day I just stood outside his room balling my eyes out

and the

> intern came by to calm me down and found me a doctor to update me.

I think the

> attitudes in the nurse's changed as well when they saw a mom

crying for her son.

> JD also has a really bad, I mean the worst ever, diaper rash. They

had to call

> in a wound specialist to come by and check on him. I have already

gotten the

> hang of how to take care of my son. As soon as I get off of work,

I go and get

> JD's food ready, he is now up to 3 oz. I put it in the bag and

start the

> machine up. He still gets fed over an hour time. During this time

I check his

> diaper for changing. Sometimes he sleeps and sometimes he is awake

moving around.

> Around 4:30 the nurse or RT will come in and ask if I am ready for

his trach

> tie change. This is my favorite part, I just feel closer to JD

when I am doing

> this. I always have everything ready to go, I even cut the ties

the right

> length for him. I like to make sure we have everything ready

before we begin.

> After we change the ties then it is time to suction the trach,

nose (which he

> really hates a lot; can't blame him) and then his mouth. Usually

this is also the

> time for his breathing treatment. If you think this is a lot now,

his morning

> is worse when he has OT, PT, Speech Therapy, Child Life..ect.

After we are

> finished he is usually worn out and ready to sleep. Last week, I

got the scare

> again. Somehow, JD got his trach out. I think this might have

scared him and he

> didn't know what to do, he was receiving OT.They had to call Code

Blue, all

> they had to do was bag him. I called when this was going on and

the nurse could

> not come to the phone and was told that I needed to call back. I

heard the

> alarms, but just asked if everything was okay. I was just told to

call back in 10

> minutes, please. So I called back and was told what had happened.

I left work

> and get there as fast as I could, came into the room and saw JD

hanging out

> just looking better than ever. I told him that he sure knows how

to get a

> crowd. He was probably thinking " hey mom, what's going on " While I

was suctioning

> him, I went to his nose and got the shock of my life. My son

slapped my hand

> out of the way. I was speechless, I can't believe my son just did

that. JD has a

> way of having the nurses come in when he sets off the alarms. I

was holding

> him and he kept grabbing at one of the monitors and he was awake,

he got it off

> and set off the alarm. As soon as the nurses came in, he went to

sleep, he is

> probably thinking that if they think he is asleep then they won't

think he

> did anything wrong. He is too funny. They were worried last week

because JD kept

> getting his heart rate up, running fever..ect. Finally on Friday

they

> realized that his diaper rash was getting worse that could be the

answer. That

> afternoon he was naked and very happy.

> Olivia is getting so beautiful. We got her a bumbo seat and she

loves it. She

> now weighs 12lbs. She is making off sorts of noises and smiling.

She does cry

> when she doesn't get her way. She got to see her brother a couple

of weeks

> ago. She grabbed his face and he got mad at her and poked her in

the eye. Both

> were crying and kicking each other. They had to separate for a

while. Olivia is

> very observant and likes to watch her brother get his breathing

treatments.

> She is still rolling over and playing with her toys.

> Well, that is enough for now, and I really appreciate what

everybody

> has done.

> Take Care

> , , Olivia and JD 5 months.

>

>

>

[Guest guest]

My son Evan (no trach, but sure makes a lot of snot!) hates having his nose

suctioned too. I remember the first time he slapped my hand away too. Now he

is quite proficient at avoiding suctioning--he can work his right arm almost

like a num-chuck to push me out of the way (that is probably mis-spelled, but

hopefully you know what I'm talking about) and then he gets his head nodding

back and forth...I worry I'm going to poke him in the eye with the suction tip.

It's great to see them express some emotions about all the stuff that's being

done to them, but the novelty quickly wears off once something that took only a

matter of seconds gets streched to almost a minute!

(mom to Evan 7 mos).

erin32573@... wrote:

It has been awhile since and I have sent an email out about the kids. I

first want to start off by saying thank you so much for all of the prayers,

concerns, and the help of those that have been coming up to the hospital to sit

with JD. Sometimes we just need someone to talk to and get out our

frustrations. and I have just decided that when JD comes home (maybe April

or

May), he will have 24 hour nursing care for a little while ,.and that the room

is

not big enough for both JD and Olivia, plus the nurse and what ever else he

may need. So the guest room is right across the room from JD and that we are

going to take the bed out and put Olivia's bed (which is still in our bedroom)

in

the room. This will eventually be her room when she gets older. and I

already have a plan of action of where we are going to change JD's trach ties,

trach..ect.

JD has had his ups and downs lately. He would have good days and some bad

days. There were days that I would see him get frustrated and can't do anything

but cry. One day I just stood outside his room balling my eyes out and the

intern came by to calm me down and found me a doctor to update me. I think the

attitudes in the nurse's changed as well when they saw a mom crying for her son.

JD also has a really bad, I mean the worst ever, diaper rash. They had to call

in a wound specialist to come by and check on him. I have already gotten the

hang of how to take care of my son. As soon as I get off of work, I go and get

JD's food ready, he is now up to 3 oz. I put it in the bag and start the

machine up. He still gets fed over an hour time. During this time I check his

diaper for changing. Sometimes he sleeps and sometimes he is awake moving

around.

Around 4:30 the nurse or RT will come in and ask if I am ready for his trach

tie change. This is my favorite part, I just feel closer to JD when I am doing

this. I always have everything ready to go, I even cut the ties the right

length for him. I like to make sure we have everything ready before we begin.

After we change the ties then it is time to suction the trach, nose (which he

really hates a lot; can't blame him) and then his mouth. Usually this is also

the

time for his breathing treatment. If you think this is a lot now, his morning

is worse when he has OT, PT, Speech Therapy, Child Life..ect. After we are

finished he is usually worn out and ready to sleep. Last week, I got the scare

again. Somehow, JD got his trach out. I think this might have scared him and he

didn't know what to do, he was receiving OT.They had to call Code Blue, all

they had to do was bag him. I called when this was going on and the nurse could

not come to the phone and was told that I needed to call back. I heard the

alarms, but just asked if everything was okay. I was just told to call back in

10

minutes, please. So I called back and was told what had happened. I left work

and get there as fast as I could, came into the room and saw JD hanging out

just looking better than ever. I told him that he sure knows how to get a

crowd. He was probably thinking " hey mom, what's going on " While I was

suctioning

him, I went to his nose and got the shock of my life. My son slapped my hand

out of the way. I was speechless, I can't believe my son just did that. JD has a

way of having the nurses come in when he sets off the alarms. I was holding

him and he kept grabbing at one of the monitors and he was awake, he got it off

and set off the alarm. As soon as the nurses came in, he went to sleep, he is

probably thinking that if they think he is asleep then they won't think he

did anything wrong. He is too funny. They were worried last week because JD kept

getting his heart rate up, running fever..ect. Finally on Friday they

realized that his diaper rash was getting worse that could be the answer. That

afternoon he was naked and very happy.

Olivia is getting so beautiful. We got her a bumbo seat and she loves it. She

now weighs 12lbs. She is making off sorts of noises and smiling. She does cry

when she doesn't get her way. She got to see her brother a couple of weeks

ago. She grabbed his face and he got mad at her and poked her in the eye. Both

were crying and kicking each other. They had to separate for a while. Olivia is

very observant and likes to watch her brother get his breathing treatments.

She is still rolling over and playing with her toys.

Well, that is enough for now, and I really appreciate what everybody

has done.

Take Care

, , Olivia and JD 5 months.

[Guest guest]

,

thank you for the update on your sweet babies.

pam

[Guest guest]

Sounds like everything is moving right along and I hope he is home

soon!!

Big Hugs,

Crystal and Eva (1 year old CHARGEr)

>

> Here is an update from our Care Conference on Tuesday. First of

all, Olivia got to spend the weekend with her brother. All she

wanted to do was just play and JD just wanted to sleep. She reached

over to his foot and wanted to bite his foot. He got mad and set the

alarms off. Finally she got tired and fell asleep with her brother.

> On Tuesday, we found some information regarding Home Health Care

and what the insurance is going to do. and I have already met

our out of pocket expenses. So everything should be paid for as far

as equipment, supplies that we need. On the private duty nursing the

insurance will only allow up to 10, 000, which will only last for

about 10 days. That is not enough. Our doctor is going to insist

that we get more. He wants us to have for 2 weeks 24 hour Nursing,

the next 2 weeks will be 22. The lowest we can get will be 16 hours

as long as he is still on the ventilator. When school starts back up

we will have a nurse while and I are at work.

> Back when the babies were born, and I got denied Medicaid

for JD due to the fact we make too much money. There is a waiver

that we can apply for to get medicaid. This would be that JD would

have to spend 1 or 30 days at a Nursing Home Facilities. Our doctor

is only going to want JD in the home for one day. After the one-day

we will leave there with a Medicaid number. There are only two of

these homes in the state of Texas. One is in Temple and the other

one is in Tyler, both are over an hour away. I will be all right

with one day then 30 days.

> and I are doing great in our training. We both have been

successful in changing the trach ties, feeding pumps, giving

medications, changing his G-Tube button out I just finished on how

to use the ventilator machine and what all of the numbers mean. Next

week, and I are going to have our CPR Training, which

gets certified every year because of his job. Last Friday, I got to

get JD outside and Sunday we are planning on getting both kids

outside and having a picnic with them. Sometime next weekend I will

be doing my first 24 hour staying with JD and then the next one will

be before he comes home and testing out his equipment.

> Olivia is doing great. Actually both Olivia and JD weigh the exact

same. 15lbs 4 oz. Olivia is trying to crawl, she is just scooting

right now. She is sleeping through the night and is on the stage 2

foods, which includes meats.

> JD is also starting to sit in his bumbo seat. He still needs a

little bit help with his head but he is doing great. He likes

sleeping on his stomach too.

> and I are so blessed to have these two.

> Update later when know more.

>

> & , parents to Olivia and JD(CHARGE: Choanal Atresia,

Heart Repair, TE-F Repair, G-Tube, Trach , Hernia Repair and A Happy

Little Man ) 8 months on Saturday!!

>

>

>