Re: Maloy--triple procedure

[Guest guest]

Hi Maloy,

RSV is very nasty, and unfortunately 's ped didn't think he fit

the description of babies that are in need of the shots. He was not a

preemie at 39 weeks, but only weighed 3#5oz at birth and his lungs were

immature. (his body, from the neck down, was approximately 10 weeks behind

his gestational age at 4 months) Subsequently, he did not receive the

Synergis shots, and this infection has really taken it's toll on him. He

entered the hospital ped ward on Wed., 12/11. By Thursday evening he was

moved to the PICU. On Fri., they felt he was expending too much energy just

trying to breath, so he was intubated and placed on the vent. And there we

are, stuck. They are having a lot of trouble trying to extubate him. Dr H

believes that he has blown his fundo, and is once again, refluxing. The

constant irritation from the micro-aspiration is complicating the situation

greatly. Tomorrow morning, he is going to surgery to have a Broviac placed.

If anyone understands exactly what this is, could they let me know? He is

also having a GI study run, to determine the condition of his fundo.

was very malnourished and catabolic, when his triple procedure was done.

This can impede the healing process, but at the time there was no other

choice. We had gone to NY, to see Dr H, for a three day visit. It turned

into a three week stay, and funds were low. Long story!

The triple procedure consists of the G tube, the fundoplication (most

often a Nissen) and the pyloroplasty. The G tube is obvious, the fundo

tightens up the top of the stomach so they can't reflux acid and food all

the time, and the pyloroplasty relaxes/opens the pyloris sphinxtor, the

opening at the bottom of the stomach into the small intestines, so that the

stomach can empty faster.

As I said before, we have been so happy with the results. loves

to be held and cuddled, something that he couldn't tolerate before the

surgery. And he has developed a little fat roll under his chin, his arms and

legs have chunked up, he is now able to control his head for long periods of

time, he is almost sitting on his own, and he can inch-worm his way across

the living room carpet. All of this, in 3 months time, and with the lesser

weight gain than Dr H wanted. She was hoping for 1/2 to 1 lb./week. He has

only gained 2# in 3 months, 8#3oz at 9 months of age to 10#4oz at one year.

Actually, we have been able to weigh him since 12/11, so I have no idea what

he weighs right now. I am sure this hospital stay has seen at least some

weight loss, hopefully not too much.

I hope this has all been helpful, and if there is anything else I can

answer, or let you know, just drop me a line. I love to talk about B, just

ask anyone on this list serve! LOL He is a constant source of joy in our

lives!

Pat (g-ma to

[Guest guest]

Thanks Kim,

Merry Christmas and god bless to you and Connor!

Pat (g-ma to

PS - RSV has got to be the scariest stuff we've encountered so far!

[Guest guest]

Thanks Kim,

Merry Christmas and god bless to you and Connor!

Pat (g-ma to

PS - RSV has got to be the scariest stuff we've encountered so far!

[Guest guest]

Hi Inga,

How old is tim now? did it eventually get easier? this last year has

been a roller coaster ride that I don't EVER want to repeat!

Merry Christmas!

Pat (g-ma to

[Guest guest]

Tim is 7 and will be 8 in March. We put off the g-tube and fundo by using

a medicine dropper to videos until last January and the GH until last

February. He was only 21 pounds just before his 7th bday, and now he is

36.5 pounds and 4 inches taller! He will have about doubled his weight in

a year if he keeps this up!

We homeschooled him last year, but this year (2nd grade) we have him in a

private school which he loves and where he is learning lots, especially

socially. His teacher has been great at giving him a love of reading - it

was like pulling teeth to get him to read sometimes last year.

Now weight gain is much easier, but for the last 4 months have been dealing

with swollen tonsils and adenoids and sleep apnea, which his ENT thinks may

need more than just these removed because of his anatomy in his throat area

- she is surprised he has survived this long, although we only just noticed

the sleep apnea this summer when he was in summer camp and when his tonsils

got swollen. So we are having more health challenges, but different ones.

I guess God just knows how much we can handle at any given time and is

teaching me to trust Him and not fret....

Inga

At 01:28 AM 12/25/2002 -0500, you wrote:

>Hi Inga,

> How old is tim now? did it eventually get easier? this last year has

>been a roller coaster ride that I don't EVER want to repeat!

> Merry Christmas!

> Pat (g-ma to

>

>

>

>

>

>

[Guest guest]

Dear Pat,

Wow what has been throught in the last year. Hopefully fewer Dr. appts.

in 2003. How did today's surgery go? Did they have to any repairs to the GI

stuff that had already been done? From my understanding a Broviac is like a

central line they place to have easier access to do blood draws, give meds. I

can't remember where it is placed thou. When Tori was in the NICU there were

babies that had this done. She never needed one.

I have to give you credit for keeping up with the listserve when B is so sick.

I know it is a comfort to reach out to the listserve, friends and family and

keep them posted as to what is going on. I did it with Tori when she was in the

NICU. It was a good stress relief and a great journal.

Merry Christmas, prayer go out to your family

Maloy

Re: Maloy--triple procedure

Hi Maloy,

RSV is very nasty, and unfortunately 's ped didn't think he fit

the description of babies that are in need of the shots. He was not a

preemie at 39 weeks, but only weighed 3#5oz at birth and his lungs were

immature. (his body, from the neck down, was approximately 10 weeks behind

his gestational age at 4 months) Subsequently, he did not receive the

Synergis shots, and this infection has really taken it's toll on him. He

entered the hospital ped ward on Wed., 12/11. By Thursday evening he was

moved to the PICU. On Fri., they felt he was expending too much energy just

trying to breath, so he was intubated and placed on the vent. And there we

are, stuck. They are having a lot of trouble trying to extubate him. Dr H

believes that he has blown his fundo, and is once again, refluxing. The

constant irritation from the micro-aspiration is complicating the situation

greatly. Tomorrow morning, he is going to surgery to have a Broviac placed.

If anyone understands exactly what this is, could they let me know? He is

also having a GI study run, to determine the condition of his fundo.

was very malnourished and catabolic, when his triple procedure was done.

This can impede the healing process, but at the time there was no other

choice. We had gone to NY, to see Dr H, for a three day visit. It turned

into a three week stay, and funds were low. Long story!

The triple procedure consists of the G tube, the fundoplication (most

often a Nissen) and the pyloroplasty. The G tube is obvious, the fundo

tightens up the top of the stomach so they can't reflux acid and food all

the time, and the pyloroplasty relaxes/opens the pyloris sphinxtor, the

opening at the bottom of the stomach into the small intestines, so that the

stomach can empty faster.

As I said before, we have been so happy with the results. loves

to be held and cuddled, something that he couldn't tolerate before the

surgery. And he has developed a little fat roll under his chin, his arms and

legs have chunked up, he is now able to control his head for long periods of

time, he is almost sitting on his own, and he can inch-worm his way across

the living room carpet. All of this, in 3 months time, and with the lesser

weight gain than Dr H wanted. She was hoping for 1/2 to 1 lb./week. He has

only gained 2# in 3 months, 8#3oz at 9 months of age to 10#4oz at one year.

Actually, we have been able to weigh him since 12/11, so I have no idea what

he weighs right now. I am sure this hospital stay has seen at least some

weight loss, hopefully not too much.

I hope this has all been helpful, and if there is anything else I can

answer, or let you know, just drop me a line. I love to talk about B, just

ask anyone on this list serve! LOL He is a constant source of joy in our

lives!

Pat (g-ma to

[Guest guest]

Dear Pat,

Wow what has been throught in the last year. Hopefully fewer Dr. appts.

in 2003. How did today's surgery go? Did they have to any repairs to the GI

stuff that had already been done? From my understanding a Broviac is like a

central line they place to have easier access to do blood draws, give meds. I

can't remember where it is placed thou. When Tori was in the NICU there were

babies that had this done. She never needed one.

I have to give you credit for keeping up with the listserve when B is so sick.

I know it is a comfort to reach out to the listserve, friends and family and

keep them posted as to what is going on. I did it with Tori when she was in the

NICU. It was a good stress relief and a great journal.

Merry Christmas, prayer go out to your family

Maloy

Re: Maloy--triple procedure

Hi Maloy,

RSV is very nasty, and unfortunately 's ped didn't think he fit

the description of babies that are in need of the shots. He was not a

preemie at 39 weeks, but only weighed 3#5oz at birth and his lungs were

immature. (his body, from the neck down, was approximately 10 weeks behind

his gestational age at 4 months) Subsequently, he did not receive the

Synergis shots, and this infection has really taken it's toll on him. He

entered the hospital ped ward on Wed., 12/11. By Thursday evening he was

moved to the PICU. On Fri., they felt he was expending too much energy just

trying to breath, so he was intubated and placed on the vent. And there we

are, stuck. They are having a lot of trouble trying to extubate him. Dr H

believes that he has blown his fundo, and is once again, refluxing. The

constant irritation from the micro-aspiration is complicating the situation

greatly. Tomorrow morning, he is going to surgery to have a Broviac placed.

If anyone understands exactly what this is, could they let me know? He is

also having a GI study run, to determine the condition of his fundo.

was very malnourished and catabolic, when his triple procedure was done.

This can impede the healing process, but at the time there was no other

choice. We had gone to NY, to see Dr H, for a three day visit. It turned

into a three week stay, and funds were low. Long story!

The triple procedure consists of the G tube, the fundoplication (most

often a Nissen) and the pyloroplasty. The G tube is obvious, the fundo

tightens up the top of the stomach so they can't reflux acid and food all

the time, and the pyloroplasty relaxes/opens the pyloris sphinxtor, the

opening at the bottom of the stomach into the small intestines, so that the

stomach can empty faster.

As I said before, we have been so happy with the results. loves

to be held and cuddled, something that he couldn't tolerate before the

surgery. And he has developed a little fat roll under his chin, his arms and

legs have chunked up, he is now able to control his head for long periods of

time, he is almost sitting on his own, and he can inch-worm his way across

the living room carpet. All of this, in 3 months time, and with the lesser

weight gain than Dr H wanted. She was hoping for 1/2 to 1 lb./week. He has

only gained 2# in 3 months, 8#3oz at 9 months of age to 10#4oz at one year.

Actually, we have been able to weigh him since 12/11, so I have no idea what

he weighs right now. I am sure this hospital stay has seen at least some

weight loss, hopefully not too much.

I hope this has all been helpful, and if there is anything else I can

answer, or let you know, just drop me a line. I love to talk about B, just

ask anyone on this list serve! LOL He is a constant source of joy in our

lives!

Pat (g-ma to

[Guest guest]

Hi Inga,

I think that is the lesson I am suppose to learn too. I have problems

trusting anyone, and it is a really problem for me to let go and put B in

God's hands, and trust Him to do His work. I'm sure that he knows how hard I

try, even if I am unsuccessful most times! LOL

Pat (g-ma to

[Guest guest]

Hi Inga,

I think that is the lesson I am suppose to learn too. I have problems

trusting anyone, and it is a really problem for me to let go and put B in

God's hands, and trust Him to do His work. I'm sure that he knows how hard I

try, even if I am unsuccessful most times! LOL

Pat (g-ma to