RE: [PHA_Parents] medications

2007-03-31 22:56:02

Hi Connie,
these are hard decisions to make, I'm sorry you are having to deal with such
decisions. In my experience as a cancer nurse, I've often been asked that
question of patients. the bottom line is, does the risk of the treatment out
weigh the benefits or does the treatment diminish Tony's quality of life
without offering any significant improvement. I certainly would discuss
these things with Dr. Ivy. I know he is reasonable and compassionate and
would respect the decision you make, whatever it is. Good Luck! Lori
Heaton (Maddie's Mom)

Medications

2007-03-31 21:34:19

I have a question for everybody. Tony has been on Tracleer and
Viagra now for quite some time. He has been on the Tracleer for
almost a year and the Viagra for almost four months. We haven't seen
any changes in his stamina at all. In fact, he seems to be getting
worse all the time. When we were out in Denver in November, the docs
said that Tony's lungs look pretty good considering all that he's had
go on with his lungs, but that his heart was in terrible shape. I
don't want to put Tony through any more procedures or tests or
anything like that. With the Tracleer and the blood draws that go
along monthly with that, it's getting harder and harder all the time
to get blood from him.
So I'm very strongly considering taking him off of his heart
medicines and just letting nature take it's course. He has a lot
more medically wrong with him than just the PPH. His PPH has been
going on since he was about 2 and he is now 13.
Does anybody have any thoughts on this? I would really appreciate
hearing whatever thoughts you have.
Thank you!!
Connie (mother to Tony, 13, PPH, Autism, Dextrocardia, BPD, ADHD,
Hydrocephalous and Samantha, 15)

RE: [PHA_Parents]Free Groceries Inappropriate

2007-03-31 09:39:56

Good call, Martha. I was suspicious of this as well. Donna, mom to Kari, passed away 5/27/03, age 20, PH.

Donna M. Lain, Office Administrator
DPC, San Bernardino Plant
e-mail dlain@...
phone #: 909-887-8131, ext. 11
fax #: 909-880-3576

What An Amazing Find! Free Groceries For Life!

2007-03-31 06:29:54

Living in a small quiet town, I was shocked to see a large crowd of
people surrounding TV cameras at my local Winn Dixie supermarket. I
figured something really bad had happened. As i approached I
realized they were filming a television show for a new savings
concept that is being used. They were pulling people out of the
crowd to partake and the man in charge asked if I was ineterested.
Well I nearly fainted but thought that this was a once in a lifetime
opportunity so I agreed. We were all told to fill out shopping carts
to the top with any products that we desired. Once this was
accomplished we were given coupons for almost every item in the
carts. Then we were told to go to the check out. My bill came out to
$ 579.74 then I presented the coupons that were given to me through
this program and the final bill was only $ 26.33! For participating
the company let us keep all the groceries and items in the cart and
gave us complimentary memberships. I used mine the following week
and experienced the same huge savings. The company's website is at
http://www.wrldofproducts.com I feel so fortunate to have found this
that I want to share this great tip!

Re: [PHA_Parents] Tara's checkup - changing meds.

2007-03-30 21:14:48

Chris:
I'm very glad to hear that Tara's checkup went well. I haven't hear of the
Levitra. It must be really new. It will be nice that you won't have to give as
many medicines. I hope that the big discussion next week goes well, also!
Connie

Tara's checkup - changing meds.

2007-03-30 19:16:06

Hi All

Tara's checkup went very well, pressure still sitting around 55 on echo. Drs really pleased there isn't any progression happening and she is stable and not having too many symptoms. Praise the Lord.

The transplant Dr has offered to change from viagra to levitra - that's the long acting form of viagra. Means only one tablet a day instead of 4. Must say I like that idea and I'm sure Tara won't mind either. They haven't got any other patients on it yet, so we are reserved in our decision. Hard to decide. Her cardiologist is also considering changing to Tracleer, hoping to get a big decrease in pressure.

Anyways they will have their big discussion next week and let us know which way to go. I don't think the transplant Dr wants Tara on Tracleer at this point, he would rather wait and switch to that if and when the PH progresses. that's what he told me.

We had a horrible flight home, we had to fly thru a few thunderstorms and I was very "seasick" by the time we arrived. Reminded me just why I don't go on boats!!!

Best wishes

Chris

Tara's mum

Re: [PHA_Parents] Tara having checkup tomorrow

2007-03-30 13:06:01

Chris:
Good luck on Tara's six-month follow-up with the doctors!! You'll be in my
prayers.
Connie (Mother to Tony, 13, PPH, ADSD, Autism, etc... and Samantha, 15)

Tara having checkup tomorrow

2007-03-30 09:15:54

Hi everyone

seems to have been quiet this last week.

Tara is having her six monthly checkup with Transplant Dr and Cardiologist tomorrow and next day. Let you know when we come home how it goes.

Best wishes

Chris

mum to Tara

Re: [PHA_Parents] transition planning

2007-03-30 00:37:09

I am not sure how this may apply here...but my daughter Noel has pph with
eisenmenger and uncorrected heart defects...
she also has down syndrome.....although it doesn't seem to bother her.....
We will be having a cse meeting with the school soon...It started because
she needs a zoom text 2 because she is legally blind and no one seems to
want to pay for it...
well...along with this meeting they also want to do a transition planning
meeting......
I know what this is..but have always avoided anything conected to grown up
because it was too painful for me to think that she may not get here...
she is 20 years old now.....she is eligible for school for one more year
but....I do not want it and neither does she.....
I would like them to teach her or introduce her to some type of business
that she can do at home...
has anyone ever had to deal with this issue...
my daugher was dx with severe pph at 18 months of age.....she is quite
advanced and she is on homebound schooling...I really don't think she could
go out to a job every day...in fact I can say she can't....
I would like to hear from anyone who has ever had to deal with anything like
this...
thanks...much love celeste

RE: [PHA_Parents] Children and Viagra

2007-03-29 16:00:20

HI, we live in Canada and our daughter has been on Viagra for 2 years, if he
would like to know some information he could contact myself.
Marisa Syskakis
22nd Floor, Communications
Alberta Health & Wellness

Re: [PHA_Parents] PH Parents - Juggling Act

2007-03-29 10:56:46

Pam:
I think you are coping better than you think that you are. Yes, it is a huge juggling act, first of all, just having children that are involved in different things and being the carpool mom and making sure that everyone gets to where they need to be. When you add in the needs of a special needs child, that juggling act gets so compounded that you do feel like you're being pulled in so many different directions.
Is there any possible way that you could get a hospice or respite nurse to come in and be with Becky when the school teacher is with her and you are taking your other children places? Or how about a close friend/family member who could help out with some of the driving?
I hope that you know that we are all here for you any time that you need to just vent!! And we are here to listen!!
Connie

Children and Viagra

2007-03-29 07:38:31

Yesterday I received the following request from a Canadian reporter:
"I'm the national health and medical reporter for the Canadian
Broadcasting Corporation's radio service. I'm doing research on the
use
of Viagra for children and infants with PH.
I'm interested to know what your organization is hearing about the
effectiveness and safety of this treatment, as I'm told it's becoming
more widespread. Also, I would like to find a family with a child
taking
Viagra for PH, to talk about how it has helped or hindered the
situation.
I appreciate any help you can give me."
If anyone is interested in working with this reporter to raise
awareness about PH, please let me know.
Thank you!

PH Parents - Juggling Act

2007-03-28 22:18:05

Hi everyone,

I don't know how much of this relates to PH and how much is just regular life, so if you become bored with this post, feel free to skip it. I think I may just be needing to talk.

Becky, my PH daughter, who is 14, is being homebound schooled from the local public school district, as you may or may not remember. Last semester it worked really well because she had one teacher who was only a homebound teacher and didn't teach anything else during the day taught Becky 3 subjects, and then we had a separate math teacher who taught her in the early evening since he did teach during the day.

Well, the homebound teacher decided to leave the school district since her bosses didn't seem to know what they were doing and were driving her crazy. So now the math teacher is teaching Math, English and World Geography. He can only come at 5:15 p.m. on Tuesday, Wednesday and Thursday since he teaches in the day. Then she has a separate Science teacher who teaches Science during the day. She wants to come right after school, like 4:00 p.m. My other 2 children get out of school at 3:15 p.m. and I have to pick them up, and on certain days they have after school activities. But I have to be sure and be home since I am required to be there when the homebound teacher is there in case of a medical emergency on Becky's part.

I am beginning to feel like I need to split myself in two parts! Maybe that way I could be in two places at once.

Jennifer, I am thinking of that thing you said your husband, Bill said that God always gave you more than you could bear so that you would depend on Him. Maybe that is true, but it surely would be a hard way to learn anything.

And in the meantime, I am taking 2 antidepressants, an anti-anxiety pill, and a pill to help with getting irritated, and am now taking different supplements that are supposed to help your body deal with stress.

I am beginning to wonder if I will ever get back to the point where I feel like I cope fairly well.

Anyway, forgive the length of this and the carrying on and on. If you have anything to say about all this, let me know. Thank you for listening.

Pam (mom to Becky - 14 - PPH, scoliosis, congenital heart disease, ADD, anxiety disorder, etc.; Johnny - 12, and Laura - 8)

Re: [PHA_Parents] Ben is home

2007-03-28 12:57:17

Dear Lori,

I am really glad to hear that Ben is home, safe and sound. I bet he does much better at home than in the hospital. My son, Sean always does, once they say you can be discharged, he is up and dressed and tapping his foot at the doctor to write the discharge papers. What a difference from when he was first diagnosed (10/02) and sitting still as could be in a hospital bed. He keeps his doctors hopping...must be that 20 year old testosterone in his body.

The Make A Wish isn't like Ben is dying, well if you want a new outlook, we all are...I mean we as humans have a 100% mortality rate.... Just inquire and go from there, your Mother's heart will tell you what to do.

I again am thrilled your sweet little boy is home. I am sure you feel much better too!

Will be praying for all of you.

Evan White (pronounced Eve-anne)
Mother of Sean the flolan addict
DX 10/18/02, PPH
Peace to everyone who reads these words
Working to help find a cure to this silent killer

Make A Wish Thanks

2007-03-28 06:47:51

Thanks to everyone who responded to my Make A Wish question. We were able to bring Benjamin home from the hospital yesterday (hallelujah!). He was in intensive care for a week. He came home with 24/7 oxygen and nebulizer treatments every 4 hours. Hopefully, we can wean him off the oxygen in a week or so and just go back to oxygen at night. When he was first sick, I was convinced he had the flu that everyone talks about. He ran a very high fever for 3 days and I even talked to a doctor who said it sounded like the flu. After the third day I decided to check his oxygen sat. with a oximeter that we had left over from when he was very little. When we put the probe on his toe his oxygen sat was 17-20%! We immediately took him to the emergency room. It is a miracle he survived. I don't think the doctors and nurses who saw him that night thought he would survive.

Once Benjamin is better, I will definitely make an effort to get him a wish. I also feel that asking for a wish makes it seem more like he's dying but sometimes the truth is hard to admit.

Thanks again for all the responses!

Lori (Ben's mom)

RE: [PHA_Parents] Make A Wish Thanks

2007-03-28 06:41:39

Lori,
So glad ben is home and feeling better. I had the same mind set when
considering a wish for Madison. but the volunteers assured me it is for any
child with a LIFE THREATENING condtion, not just for kids with terminal
illness. I also felt a little guilty for requesting a wish, because at the
time we could afford to take her to Disneyworld. but they also told me that
the Wish is for the child, not the parents. Anyway, call them i know you
will not regret doing it. Take care Lori (Maddie's mom)

Re: [PHA_Parents] Make a Wish inquiry

2007-03-27 21:45:36

Hi,

If I were you, I would go ahead and ask for one now. The wish child has more fun if they are still well enough to enjoy it.

My daughter, Becky, 14, has PPH, congenital heart defects, scoliosis, ADD, anxiety disorder, etc. She is now Stage 3, and has to have homebound schooling. We had our wish (Becky wanted to go to Disney World in the worst way) in May of 2000. We had a great time - we have two other children who are younger than Becky. Becky felt pretty well most of the time then, and had a great time.

Just my humble opinion, for what it is worth. Best wishes.

Pam
Reifsteck <prfstck@...

My son Benjamin, with PH, will be 4 in April and has been fairly healthy until last week. He has been in the hospital since New Year's eve with severe pneumonia. He is in the ICU and continues to get better a little everyday. He hasn't been on any medication before the pneumonia but his cardiologist now mentioned looking into some options like Viagara.

My question though is about the Make a Wish program. I never thought he was sick enough to ask for a wish but now I am wondering if I should do it. Our cardiologist always seems to bring me back down to reality when I forget how sick he really is. Like I said, before last week he was healthy on the outside with the exception of the occasional cold. The cardiologist always says Benjamin will "probably" be fine until he is 10 yrs old or so. It seems like that age keeps coming down. He used to say until he was a teenager.

If I made a wish for my son, since he can't really express one since he has Down Syndrome, it would be a trip to Sea World because he loves fish. The wish would be as much for our family as it would be for him since my other 2 sons, 10 and 15 yrs, have suffered a lot with dealing with their brother's illness. We have not had a good vacation since he was born.

When is the right time to ask for a wish? I have seen a lot of talk in the past from the group about Make a Wish so I know you all have dealt with the organization. Any info and prayers would be greatly appreciated.

Lori (Ben's Mom)

Re: [PHA_Parents] Jennifer

2007-03-27 20:30:17

dear Jennifer....I liked your story about the playhouse and make a wish...it was beautiful

I don't think I had ever read the details about Joey and the hemoptysis...

my heart was breaking as I read your story and it did bring tears to my eyes...

my daughter has also had several bouts of this and it has to be one of the scariest things.....

I am happy that you somehow survived this and that you have been able to share the happy details of Joeys life as well as the more serious events.....

you are one strong lady.....thanks for staying in the ph parent group....I appreciate all of your posts....much love celeste mother of noel 20 yo pph eisenmenger heart defects...........etc.................................

Make a Wish inquiry

2007-03-27 08:00:01

My son Benjamin, with PH, will be 4 in April and has been fairly healthy until last week. He has been in the hospital since New Year's eve with severe pneumonia. He is in the ICU and continues to get better a little everyday. He hasn't been on any medication before the pneumonia but his cardiologist now mentioned looking into some options like Viagara.

My question though is about the Make a Wish program. I never thought he was sick enough to ask for a wish but now I am wondering if I should do it. Our cardiologist always seems to bring me back down to reality when I forget how sick he really is. Like I said, before last week he was healthy on the outside with the exception of the occasional cold. The cardiologist always says Benjamin will "probably" be fine until he is 10 yrs old or so. It seems like that age keeps coming down. He used to say until he was a teenager.

If I made a wish for my son, since he can't really express one since he has Down Syndrome, it would be a trip to Sea World because he loves fish. The wish would be as much for our family as it would be for him since my other 2 sons, 10 and 15 yrs, have suffered a lot with dealing with their brother's illness. We have not had a good vacation since he was born.

When is the right time to ask for a wish? I have seen a lot of talk in the past from the group about Make a Wish so I know you all have dealt with the organization. Any info and prayers would be greatly appreciated.

Lori (Ben's Mom)

Re: [PHA_Parents] Happy New Year! Not PH related

2007-03-27 05:06:50

Evan:
Congratulations on the new grandchild!! You must be very, very proud. I was glad to hear that all is well with you.
I hope that the New Year brings you all that you wish for.
Connie

Happy New Year! Not PH related

2007-03-27 02:06:06

Hello Everyone,

Happy New Year! I hope each of you had the joy of ringing in this new year of hope and love together with family or friends so that it was memorable. I sure had fun with our family!

I am still without a computer to call my own, but am getting on this machine quickly to write and share good news...

Andrew Phillip Zienowicz made his grand appearance into this world on January 2, 2004 at 8:38 AM. He weighed in at 7 pounds. 7 ounces, and is 20 1/2 inches tall/long. He is the pride and joy of his grandfather Dennis (my hubby). This beautiful young man was born to Kelli and Dean Zienowicz who both had/have the FLU while bringing this gift into the world.

Okay now to explain. Kelli is my husband's daughter, and you would think she was his only child by the way he ooooohed and ahhhhed all over her and the baby. Dennis held Andrew the entire time we were at the hospital, and is sop proud and prideful I thought he was going to burst right there.

That is something I will remember to keep m sanity when all about me is chaos, Dolores!

Barbara, wonder if a fat non Ph'er can get into your challenge of becoming a loser....

God Bless You all, I am spent, I think the flu bug has come here to my stomache....just call it home. Hopefully for jsut a few days though. I love all of you!

Angela, if I can find a camera, I will send you us for your fridge, I have Judah right witht he rest of my "children" I keep all my friends photos together and Judah is right there with all the other dolls! I LOVE your sweet son!

My best wishes for each and everyone of you!

Love,

Evan

ADVOCACY UPDATE: Congressional Action and Organ Donations

2007-03-26 14:28:40

Senate Passes the "Organ Donation and Recovery Improvement Act"
On November 25, 2003, the U.S. Senate unanimously passed S. 573,
the "Organ Donation and Recovery Improvement Act," sponsored by
Senator Bill Frist (R-TN) and Senator Chris Dodd (D-CT). The bill
awaits consideration in the House when Congress reconvenes in
January.
This legislation encourages more people to be donors by: providing
reimbursement of the travel and subsistence costs associated with
donation; providing greater resources to states to expand their
public education and outreach efforts; awarding grants to establish
programs to coordinate organ donation activities of eligible
hospitals and organ procurement organizations. $25 million is
authorized for these purposes in fiscal year 2004.
Representative Bilirakis (R-FL) passed the House Version (H.R. 399)
in March of 2003.
PHA is pleased with the passage of S. 573, because of the desirable
impact it will have on the PH community. PHA's Scientific Leadership
Council states that "lung transplantation is a treatment option for
selected patients with pulmonary hypertension when medical therapy is
no longer effective." (http://www.phassociation.org/Learn/Consensus-
Statements/display.asp?id=3)
Senator Frist performed the first lung transplant at Vanderbilt
University in 1987 on a PH patient. He understands the necessity of
organ transplant advancement:
"Passage of this bipartisan legislation is the most significant
reform to organ donation in a decade. Organ donation is one of the
most critical issues before us today. This bill is a necessary step
to improve and encourage organ donation so that more patients and
families can benefit from life-saving transplants. Public awareness
is key to improving organ donation, and I applaud my colleagues for
supporting this comprehensive, innovative approach."
To view the full text of the bill, please visit
http://capwiz.com/phassociation/issues/bills/?bill=4602521.

Happy New Year / Louise's Update

2007-03-26 09:07:21

Dear Parents
Best wishes for 2004!
For more info on Louise, click here:
http://homepage.ntlworld.com/als.king/
Love Louise & Family xxxx

Re: [PHA_Parents] Merry Christmas/Happy New Year

2007-03-26 02:23:49

Dear Evan,

I am so glad to hear from you! I am sorry about your hand - sounds really uncomfortable. Thank you for the good wishes. I hope they come to pass for all of us. I am mostly hoping for a better year for Becky's health and for fewer crises.

Take care.

Pam (Becky's mom)

Lady Evanne <ladyevanne@...

Hi Everyone,

This will be short and sweet, as my hand is back in a brace from doing whatever....

I hope your Christmas was full of the light of HIs love, and that Light shines within for the year ahead. May this new year bring peace, joy, and prosperity to each of you, and may the wealth of health continue to keep us all going. God bless each of you for your love and encouragement this past year, and in the year to come.

My hand is already failing, so I have to close for now. Don't fret, it is a flare up of an old injury- just one dead hand and one good one. Hard to type, without the brace. Hugs to all my family here, I love you all.

Love,

Evan

Merry Christmas/Happy New Year

2007-03-26 02:17:18

Hi Everyone,

This will be short and sweet, as my hand is back in a brace from doing whatever....

I hope your Christmas was full of the light of HIs love, and that Light shines within for the year ahead. May this new year bring peace, joy, and prosperity to each of you, and may the wealth of health continue to keep us all going. God bless each of you for your love and encouragement this past year, and in the year to come.

My hand is already failing, so I have to close for now. Don't fret, it is a flare up of an old injury- just one dead hand and one good one. Hard to type, without the brace. Hugs to all my family here, I love you all.

Love,

Evan

Re: [PHA_Parents] Ability to Bounce Back

2007-03-25 20:20:37

Pam,

Sometimes I think being a cargiver to a PH child is like having an extra 10 pound weight on your shoulder. I know with my local friends they don't understand. They will take me out to "get me out of the house" or take a break. Of course it is enjoyable but always in the back of my mind runs: Is it ice change time, is it getting close to mixing time, blood draw time etc. These things don't go away for us. So I think sometimes we are worn out and things might hit us harder. Also for me I have enough Stress in my life without changing Pastors too!!. My favorite is when people tell me to go on a nice family vacation. Oh yes...Lets set up dry ice, oxygen for the trip, Oxygen for vacation, tons of back up medicine, IV kit, Broviac repair kit, pulse ox, Phone book of Doctors, A fridge for flolan, look on internet for a decent hospital incase anything happens. And this is before we even get out the door. Some things get better. Like our family knows where to get Dry Ice in 15
different states. Are you impressed? The best place is in Hot Springs Arkansas. There are 15 places to get Dry Ice. We probally don't even want to know what those good ole boys are using that dry ice for now do we??

Take care

Sunnie
Pam Adams <pcadams_2000@...

Hi everyone,

I guess everyone is busy with Christmas these days. No one seems to post very much.

I know I have done a lot of either having problems or complaining lately. However, I do need to know something so I will know if I am crazier than the average PPH parent (what a thought).

I just found out today when I went to church that our senior pastor (whom I think a great deal of) is leaving our church to be the pastor of another church in another Texas town. I was not personally close to him, but I seem to have just gone into a decline over this feeling sad and more depressed than the situation would seem to warrant. I was listening to a Christmas song on the way to work and started to cry. I am guessing it is this occurrence combined with all the events having to do with Becky.

What disturbs me is that I would think that I would eventually recover my emotional ability to bounce back if something sad happens? I used to be a strong person emotionally, and that part of me seems to have left for an awfully long time.

Thanks for listening.

Pam (Becky's mom)

Ability to Bounce Back

2007-03-25 17:31:05

Hi everyone,

I guess everyone is busy with Christmas these days. No one seems to post very much.

I know I have done a lot of either having problems or complaining lately. However, I do need to know something so I will know if I am crazier than the average PPH parent (what a thought).

I just found out today when I went to church that our senior pastor (whom I think a great deal of) is leaving our church to be the pastor of another church in another Texas town. I was not personally close to him, but I seem to have just gone into a decline over this feeling sad and more depressed than the situation would seem to warrant. I was listening to a Christmas song on the way to work and started to cry. I am guessing it is this occurrence combined with all the events having to do with Becky.

What disturbs me is that I would think that I would eventually recover my emotional ability to bounce back if something sad happens? I used to be a strong person emotionally, and that part of me seems to have left for an awfully long time.

Thanks for listening.

Pam (Becky's mom)

PHA Membership

2007-03-25 05:17:32

Hello Everyone. It is a busy time of year and I know many of you are busy with holiday

preparations. PHA is busy preparing for the end of the year as well. It is at this time each

year that they ask members of the community to renew their commitment to the cause by

joining or renewing their membership in PHA. For those who are able, it is also a perfect

time to make a special donation to the organization.

My husband Mark and I are excited to be playing a role in PHA's end of the year

membership campaign. We donated to a matching fund - which will double the dollars contributed by members, up to $41,000. So if you join PHA for $15, your donation is actually worth $30 to PHA!

PHA sent its annual report and membership materials out earlier this month. If you haven't received a copy, you can view it online at http://www.phassociation.org/Help/EOY/index.asp

You can join or renew your membership directly on-line at https://www.phassociation.org/help/member.htm

As a family who has a child with PH I am so thankful for the many services and resources

that PHA provides. Thank you all for your continued support of PHA.

Laurie Jeter, PHA Parent Coordinator

Re: [PHA_Parents]help changing email address

2007-03-25 02:58:18

Good morning...I would like to change my email address
to.....adkflowerchild@....
thank you for anyone who can help....

Re: [PHA_Parents] Flolan - Central Line Problems

2007-03-24 14:56:14

Pam,
How do you tape your central line? We always made a loop with Joey's
extension tubing and taped it to his skin. The theory is that if you
yank the line, you will tear off the loop of tubing taped to the skin
first before it puts pressure on the line itself. Presumably the person
should feel the tape ripping off his skin and slow down if the line
gets jerked.
Because Joey was so small, we draped the line under his arm and taped
the loop of extension tubing onto his back. Joey was allergic to tape
so we used a piece of tegraderm to secure it. He was fairly good about
telling us if his loop ripped off his skin, but he wasn't always good
about telling us if his central line dressing was loose. Sometimes he
would scratch his central line dressing off.
We actually kept Joey's pump harnessed to him and we protected the
tubing in plastic conduit designed to protect automobile wiring. The
conduit is flexible and has a slit down the middle so the tubing could
be easily inserted or removed. We took silk tape and taped the top of
tubing, then pinned the tape to Joey's harness with a diaper pin. Then
we velcroed the conduit with the tubing to the straps which connected
Joey's pump to his harness.
It was a lot of getup, but we knew Joey wasn't going to be careful with
his line. He was still 2 years old when started on flolan.
We were fairly successful with the line but we couldn't talk Joey out
of standing on his pump. Joey was so short he used to stand on his pump
to get extra height. Once or twice he stopped the pump that way. And it
was not unusual for him to accidentally clamp his central line while
playing. We had to have someone listening for Joey's pump alarm every
minute.
Fortunately, our older children helped out.
Several times Joey ran off and hid from me while in a public place,
like the library or Sears. He thought it was funny but it about gave me
a heart attack.
I think it depends on the extent of damage to the central line as to
how many times they can be repaired.
Joey's line eventually had to be replaced because it began falling out.
I don't have much advice for you, but I can sympathize. These are kids
who are ill but they are still kids. They are still going to act like
kids, and they are going to make mistakes. Most kids Becky's age have
enough trouble remembering where they left their jackets.
Hang in there.
Jennifer (mother to Joey, deceased at age 4, PPH)

Flolan - Central Line Problems

2007-03-24 09:59:28

Hello everyone,

I hope everyone is still out there. People haven't posted very much lately. Maybe it's the busyness of getting ready for Christmas.

Can someone who has experience with Flolan tell me if you have any idea how many times a Flolan line can break and be repaired without having to get a new one? Becky's line got a leak in it several months ago - in the summer I think, and it was repaired at Texas Children's Hosp. Then a few days ago, on Thursday afternoon, Becky got it hung around a chair, then thought she had it unlooped, and continued walking, and it just snapped.

This time it not only had to be repaired, but somehow had gotten a blood clot in it, which it took several different methods and lots of hours for them to get it out. We got home at 5:30 a.m!

Sometimes I absolutely hate this disease and all the trouble and anguish it causes! Now my husband is hyper about Becky's line and wants her to be more careful to keep it tucked in (which I understand). On the other line, Becky feels like he is picking on her, and she says she hates Flolan, which I can also understand.

Right now I just wish I could run away somewhere.

If you got this far, thanks for listening.

Pam (Becky's mom)

I got this thru another PH message board

2007-03-24 09:23:49

I got this thru another PH message board, please read....Love to you all, Evan
recall
notice for the ComfortGel Nasal Masks by Respironics, Inc. Murrysville,
PA.
These masks are used on patients being treated for obstructive sleep
apnea
or for respiratory failure and are used in conjunction with CPAP
devices.
These devices work by exhausting all of the exhaled CO2 out of an
exhalation
port built into the mask. The user instructions inform the patient that
the
mask contains an exhalation port and does not require the use of a
separate
exhalation device. However, the product was distributed without the
exhalation port. Without the port in the breathing circuit, it is
likely
that the patient will experience increased CO2 re-breathing and
associated
oxygen deficiency. In some cases, suffocation may result.
recall
notice, at:
http://www.fda.gov/medwatch/SAFETY/2003/safety03.htm#comfortgel

Evan White (pronounced Eve-anne)
Mother of Sean the flolan addict
DX 10/18/02, PPH
Peace to everyone who reads these words
Working to help find a cure to this silent killer

Medicare Update

2007-03-24 01:57:35

ADVOCACY UPDATE: Passage of Medicare Reform Legislation
On November 25, 2003, the Senate gave final approval to H.R. 1,
the "Medicare Prescription Drug and Modernization Act" by a vote of
55-44. This followed a long-standing debate in the House of
Representatives on November 22nd ending with a vote of 220-215.
This report will summarize what is a very complicated bill, and will
highlight the potential benefits for the PH community. Many of you
have written letters to Congress, urging them to keep our priorities
in mind as they worked out this historic piece of legislation. PHA is
pleased that several of those priorities are reflected in this bill.
As always, PHA will strive to keep you up-to-date on the issues that
are important to you.
Summary of H.R. 1:
Establish a prescription drug benefit for Medicare
beneficiaries beginning in 2006. In the interim, seniors will be
offered a discount card for prescriptions that will provide a savings
of approximately 10-15 percent. (This means coverage for oral
medications, including Tracleer.)
Eliminate a 4.5% cut in provider reimbursements in 2004 and
an additional cut in 2005. Instead, physicians would receive a 1.5%
increase in 2004 and 2005.
Increase payments for outpatient services and hospital care.
Increase payments to rural hospitals and doctors by $25
billion.
Establish new benefits for preventive care services.
Establish tax deferred Health Savings Accounts for medical
expenses.
Speed generic drugs to market by limiting the ability of
pharmaceutical companies to block cheaper alternatives.
Facilitate greater competition between traditional Medicare
fee for service and private PPO's.
Increase Part B premiums for beneficiaries making over
$80,000.
Provides expanded payment for inhalation drugs and biologics
furnished through covered durable medical equipment.
Language in bill which covers durable medical equipment:
Payment for Inhalation Drugs and Certain Other Drugs (Section 305 of
the Conference Agreement, Section 602 (c) of the House Bill, and
Section 432(b)(7) of the Senate Bill).
Present Law
Medicare will cover outpatient prescription drugs and biologicals if
they are necessary for the effective use of covered durable medical
equipment (DME), including those drugs that must be put directly into
the equipment such respiratory drugs given through a nebulizer
(inhalation drugs).
House Bill
GAO would be required to conduct a study to examine the adequacy of
current reimbursements for inhalation therapy under the Medicare
program and submit the results of the study in a report to Congress
no later than May 1, 2004.
Senate Bill
The Secretary would be able to increase payments for covered DME
associated with inhalation drugs and biologicals and make separate
payments for such drugs and biologicals furnished through covered DME
on our after January 1, 2004, if such payments are determined to be
appropriate. The associated spending attributed to the increased and
separate payments for the covered DME and inhalation drugs and
biologicals in the year would not exceed the 10% of the difference
between the savings in the total spending for these drug and
biologicals attributed to the prescription drug pricing changes
enacted in this legislation. The provision would be effective upon
enactment.
Conference Agreement
Inhalation drugs or biologicals furnished through covered durable
medical equipment that is not described in subparagraph (A) (iv) will
be paid at 85% of AWP in 2004. In 2005, it will be the amount
provided under the average sales price methodology.
GAO is required to conduct a study to examine the adequacy of current
reimbursements for inhalation therapy under the Medicare program and
submit the results of the study in a report to Congress no later than
1 year from the enactment date of this legislation.

Re: [PHA_Parents] flu- to celeste

2007-03-23 13:04:30

Dear Celeste...

tell the teacher to bite herself in her butt....

I mean it too, you know what Noel needs. Make a comprimise- order take out or thai- thai has low sodium so you can eat at home.

it the weather would hurt her then by no means let that young woman out of the house- or just tell the teacher you are in control and she can jump off- I am sorry but it is one thing to allow activities once they are medically cleared, but to go behind your backs? Pull her aside and let her know she is NOT in control here, she is the teacher. Explain to her why it is NOT going to happen and then comprimise. Tell her they can go out once the weather and health issues permit. Other that that tell this young lady to jump off a short pier.

oops. I am now off my soapbox. Or you are too sweet, just show her my letter and tell her you are too nice to tell her this....

My love to you all,

Evan

Re: [PHA_Parents] flu

2007-03-23 09:55:00

Hello....

I am wondering how you are all dealing with the flu situation....

Noel has gotten her flu shot every year and the pneumonia shot every 5 years...but once again I am feeling anxious about this flu situation...

we live in upstate NY and our local news is telling us that the flu is here and quite a few children are sick with it.....

noel is on homebound instruction...but the teachers young ones always seem to be sick....now the teacher wants to take her out to lunch at a chinese buffet of all things tommorrow for her birthday....I have told her no...of course she asked Noel first before asking me....my husband also says no....but the teacher trys to be insistant and I get the impression she thinks that I don't take noel out much because of other reasons instead of the health related ones.....

we usually go out more in the summer

less diseases and the weather is better...this summer we didn't get to because Noel had possible gout at least 3 times in a row.....her legs were so big and red and extremely painful it lasted all summer....so our travel time was ripped but at least she was well enough to go the ph support group lake cruise and she was very happy

I guess I am feeling really nervous about taking Noel out....it is one thing to be here in the house with Noel...but another to have to be with her when she is sick...she usually gets very sick and it in the past it has lasted for quite a long time....her sats are only around 70....

well....I better run....I feel like this letter sounds stupid...but I know it isn't...

much love.....celeste

another thing.....I said to her....what about the sodium in the chinese food....and the fact that the weather is in the low 20's and they tell me not to take Noel out when it is below 30.....ugh! love me

RE: [PHA_Parents] Thanksgiving, ice hockey and other things

2007-03-23 08:03:16

Dear Jennifer,
I'm thinking of you and your sweet baby boy, I'm sure your thoughts are
bitter sweet today. I remember hearing the news of Joey's passing and crying
all that evening. I don't know you, I didn't know Joey, but I know how a
mother feels and I know what it is like to care for an earth angel, which I
think these kids are because they teach us things that many people on this
earth don't learn. I hope you feel comfort and peace on this day. God bless!
Lori and Maddie Heaton

Thanksgiving, ice hockey and other things

2007-03-22 22:26:06

Dear friends,
This is a family emailing I wrote about our Thanksgiving. I thought I'd
go ahead and post it here, sometimes the site is so quiet and sometimes
we need a little distraction from all this medical stuff.
I hope everyone had a good Thanksgiving and had something to be
thankful for.
Pam, I hope the insurance stuff gets straightened out. That can be so
frustrating, and it isn't as if you don't have enough to worry about.
Here is my account of our Thanksgiving weekend:
When Emily came home from the hospital, it was cause enough for
thanksgiving. We were so thankful her appendicitis had been detected
while it was still in the early stages. We were so thankful her loss of
consciousness did not herald anything more serious. And we were really
glad that it didn't happen while she was overseas.
I was still worn out and weakened from my asthma attack earlier in the
week, but once she was at home, I felt like I could relax.
The following day was my birthday, but we really didn't do anything
much. Emily gave me a cake, and Bill gave me his present, a necklace he
had purchased at an antique store. The kids saved their presents for
the big celebration, the one following my parents arrival for
Thanksgiving.
My birthday is always in the same week as Thanksgiving. When I worked a
weekend shift, which I did for many years, Thanksgiving was the one
holiday I was sure to have off. So my parents began visiting me at
Thanksgiving, and my older brother at Christmas. They always celebrate
my birthday when they are here, as well.
This year I told my parents I wanted to go to see the Predators,
Nashville's ice hockey team, play for my birthday. I met the Predators
once in the playroom at Vanderbilt, when the team was giving a
Christmas party for hospitalized children. Up until that point, I had
never considered attending an ice hockey game, and I knew little about
the sport. But my interests changed. Up close, without the pads and
the helmets, these guys were a bunch of studs. Not too big, not too
tall, but extremely athletic looking. I like to ice skate and thought
I'd like to see what kind of moves these guys could perform on ice.
When Joey was alive, we really didn't have the time or money to pursue
such interests. But now that he is no longer with us, I set a personal
goal of viewing an ice hockey game this winter.
Our opportunity came when our family received free tickets to attend a
hockey game in Vanderbilt's private box, as a reward for Bill's and my
service on a committee composed of parents of sick children, which
advocates for families and serves to advise the hospital on various
matters. Bill, Emily, Forrester, Forrester's best friend, Brendan and I
all attended our first game.
Bill and Emily, being a little more social, enjoyed meeting and talking
with the other people in the box. Forrester and Brendan enjoyed the
ample quantities of free food. But I got hooked on the game.
What a game! Ice hockey moves faster than basketball. Ice hockey moves
faster than soccer, but has all of that non-stop intensity. And its got
the thrill of a demolition derby, as the players move about and crash
into and check one another. I loved it, probably for the same
inexplicable reason I love demolition derbies. And Emily hated it,
probably for the same reason she hates demolition derbies, but she did
enjoy the social aspect of seeing the game in the private box.
I was glad Emily was available to be sociable for me, because I learned
how to watch sports from my father. I don't watch that much sports, but
I am serious about what I view. Don't talk to me about anything except
the game while the game is in play. Yelling is essential to being a
committed fan, whether it occurs in the stadium or is directed at the
t.v. (But I do not yell obscenities, a girl has to have some standards.)
Ironically, I learned to watch sports as an only girl child growing up
with brothers, starting with those football games in my preschool years
in West Texas, where the high school football team was the only form of
entertainment in our small desert town. My husband, on the other hand,
is the less competitive of the two of us, and grew up as the only male
child among sisters. He didn't watch much in the way of sports growing
up, he claims he spent weekends attending horse shows with his sisters.
He grew up with no love lost for horse shows, and I grew up with more
knowledge of football.
I was surprised when my first ice hockey game ended after three periods
and the Predators had lost. I thought everything had four quarters, and
I still wanted more.
So I began campaigning to get Bill to take me to another game. The only
problem was, it is obvious in my house who the bigger sports fan is.
Bill spends his free time building miniature buildings and modeling an
HO scale world, an activity which is tedious and time consuming but
which brings him great pleasure. Why would he want to leave his
miniature world for a hockey game? What does ice hockey have to do with
model railroading?
Finally I realized I was aiming at the wrong target. Why not go back to
the person who taught me how to view sports? I asked my dad to take me
to an ice hockey game for my birthday.
Dad not only told me he would, he insisted we purchase the best seats
available, and he would reimburse us. So Bill did, and we made plans to
go to the game the Saturday after Thanksgiving.
Work became more difficult as Thanksgiving approached. I was
anticipating the visit from my parents, and, for personal reasons,
needed a break from Vanderbilt. Thanksgiving was the last holiday we
had together with Joey. Thanksgiving was also the time of his initial
respiratory arrest, the time I performed CPR on Joey in a restaurant
parking lot in the rain. Vanderbilt is my workplace but it is also the
place where my son died.
The last two days before Thanksgiving were the hardest. I had two
patients who had had neurosurgery and developed complications requiring
extended hospital stays and repeat surgery. The parents were
emotionally drained and demanding. Nevertheless, the children both had
excellent long term prognoses. I wanted to tell those mothers, "look,
at least your child has something they can fix!'. But it would not be
therapeutic to say, either for me or for them. And they did have cause
and reason to be anxious. But I found myself wishing they could find
another outlet for their emotions besides ringing that call light.
As soon as I had left the city traffic behind Wednesday night, I called
BIll from my cell phone while traveling the interstate. I couldn't wait
to see if my parents were already at home, and I wanted to make sure
they had arrived safely.
"No, they are not here," Bill replied, " and there is a story behind
that I need to tell you." My Dad had reached over to pick up an object
he had dropped just hours before they were to leave home. He had pulled
his back and pinched the nerve that leads to his leg. He was in a lot
of pain and not able to stand up straight. My parents had decided to
stay home, so Dad could rest and recover.
I began to cry. I was so disappointed. Ear;lier, Bill had told me our
friend Mack wasn't coming this year. I couldn't remember a Thanksgiving
without guests, and I really wanted my family to be with me, so we
could remember the last holiday we celebrated with Joey. And I wanted
to go to an ice hockey game with my Dad. How else would I celebrate my
birthday?
"I'm sorry," Bill said. "I knew that would be hard on you. I will miss
them, too."
I knew I should be glad my folks hadn't been killed in a plane crash or
something, but, at that moment, it was a great letdown.
Thanksgiving wouldn't be the same. And we had three extra hockey
tickets, three because we had purchased one for Mack, as well. I began
to think about finding a home for the tickets.
I remembered they were having a service followed by a potluck dinner at
church the next day. Often various church members do this so people who
are alone at Thanksgiving or away from their families can come and
celebrate with their church family. The service was at 10 a.m. and the
meal was to follow. Perhaps I could go to church and enjoy some
fellowship and a meal while Bill was cooking the turkey for our evening
meal. Maybe I could find a home for those hockey tickets.
So off I went to church the next morning. We hadn't cooked anything
yet, so I grabbed a bottle of wine for our contribution to the potluck.
The kids were sleeping in, and Bill was just starting to cook, so I
went alone.
And that is where Thanksgiving happened for me. The crowd that gathered
afterwards for the meal was small, but I knew most everyone. Both
Father Mickey and our new assistant priest, Dorothy, were there, with
their families. A new mother with her infant and parents, her husband
is serving in Iraq. Bob and Elizabeth, who organized the meal. Eunice,
the woman who stopped me one day at the columbarium to tell me about
all of the many relatives she had who had passed on. Don and Tia, who
arranged to have JOEY in large letters printed on the plaque over
Joey's spot in the columbarium. Even a mentally ill street person who
I've seen hanging around the church came to the service and ate. Her
name, I learned, is Theresa. I spoke to Theresa for a little while, but
her eyes kept darting nervously about the room, as if she felt she was
being spied upon. So I left Theresa alone and just let her eat. My
younger brother is mentally ill and it would be a major achievement to
get him into a public eating area, he always believes he is being
watched, and refuses to eat in a restaurant. So I decided to leave
Theresa alone and just be glad she was there.
Kerry Hudson and her seven year old son, Jonah, were there, along with
her mother in law who was visiting from out of town. Kerry worked with
Joey and his peers in the children's chapel, and I frequently saw Jonah
carry Joey's backpack when Kerry brought Joey into the "big" church for
communion. Kerry's husband,Jonah's Dad, Derrick, is an EMT serving
overseas in Mosul, Iraq.
Kerry told me recently that she and Jonah used to pray every night for
Joey. She would always pray that Joey would be cured but Jonah would
pray that someday Joey wouldn't need his backpack. She said the
backpack worried Jonah, and Jonah felt that there were a lot of things
Joey couldn't do because he had to carry that backpack around with him
all of the time. When she brought Jonah to the visitation before Joey's
funeral he saw the display of all of the backpacks Joey had worn out.
"Look, Mom," he told her excitedly, "our prayers have been answered!
Joey doesn't need those backpacks anymore." Kids see things a little
differently than adults.
I asked Kerry if she had heard from Derrick, and she said he had not
been having a good holiday thus far. His unit had been ambushed and was
forced to counter attack. Five American soldiers had been killed.
Worse, an Iraqi family had been caught in the crossfire and a child the
age of Jonah had been killed. Derrick had been at the scene as an EMT.
I was sorry Derrick had to deal with the death of an innocent child. It
is bad enough to have to deal with being fired upon. This put some of
my problems in perspective. At least no one was trying to kill me.
I told Kerry about my parents being unable to spend Thanksgiving with
us, and the extra hockey tickets. She told me that Jonah loved ice
hockey, having been to a Predator game with his cub scouts. So we made
a date for Kerry, Jonah and Kerry's mother in law to go with Bill,
Forrester and I to the game on Saturday, and I hoped that the news of
Jonah going to a hockey game could reach Derrick and brighten his
Thanksgiving a little, as well.
When we saw Kerry on Saturday she had been able to communicate with
Derrick on instant messenger later on Thanksgiving day. She told me
that he was excited about Jonah going to the game, and she had brought
a digital camera along so she could send photos of us at the game to
Iraq.
Jonah could barely sit still, and we had to endure one bathroom stop
and several "are we there yet"'s on the way to Nashville.
The game was great! We all yelled and cheered as the Predators skated
to victory, beating the Buffalo team 4-0. At one point, a predator T
shirt was thrown out into the crowd as part of a promotion. Forrester
grabbed for it and tipped it, but Jonah got it! The next thing I knew,
he was dancing around in that T shirt, which was way too large for him,
and his delighted mother was taking a snapshot to send to Dad. Then, as
the predators scored their next goal, the camera guy at the arena
focused on Forrester cheering the team on, and we saw his face
projected on the large screen hanging over the arena in front of
thousands of fans. So Forrester has had his 10 seconds of fame.
One of the Predators scored three goals during the game, which I am
told is called a hat trick. It was a career first for him.
So Jonah got a t shirt, Forrester got 10 seconds of fame, and all of
the fans got a hat trick. But, according to Forrester, the best was yet
to come.
All of us adults decided it would be a good idea to make a bathroom
stop before leaving for Clarksville, so we wouldn't have to stop on the
way. When Forrester emerged from the men's bathroom, he had approached
the urinals at the same time as our state governor, Phil Bredesen, and
he and Forrester had urinated at the same time in adjacent urinals.
"Hey, I peeed with the governor!" he exclaimed. "Is that cool or what?
I need a Tshirt or something!"
O.k., I'm a nurse. I had to ask.
"Did he wash his hands?"
"He did." Forrester assured me.
That's good. I'm not saying I voted for him, but I cannot imagine
myself ever voting for someone who doesn't wash their hands after using
the bathroom.
Hopefully our pictures are being viewed by now in Iraq.
There will be a service of evening prayer held in Joey's memory
tonight, Tuesday, December 2, at 6p.m. at Trinity Episcopal Church at
317 Franklin Street, Clarksville, TN. A group of women Forrester
refers to as my "fluffy friends" are providing us with food and plenty
of time for fellowship in the parish hall following the service. It is
not a funeral, it is not formal, it is just a time for us to get
together and commemorate the first anniversary of his death, which is
on Wednesday, December 3. For all of my friends on the PH parents
website, I think of you constantly, and invite you to remember us in
your prayers, as well. And please don't forget our soldiers overseas.
Jennifer

AWARENESS MONTH

2007-03-22 16:28:08

To all PH Advocates,
Thank you for your tireless efforts to make this year's Awareness
Month a tremendous success! I am eager to share with you the many
victories and stories of inspiration that have made history here at
PHA.
If you haven't done so already, please email me with your awareness
month victory story. Share with the PH community how you helped to
raise awareness throughout the month, and in this way you will
inspire others to become PH advocates.
Sincerely,
Cara Ugolini
cara@...
(301) 565-3004 x113

Re: [PHA_Parents] Nervous Wreck

2007-03-22 05:46:56

Pam:
I am so sorry that you're having such a difficult time! I wish I was there in
Texas to help out in some way. Hopefully everything will get all straightened
out today. It gets terribly frustrating fighting with all of these companies
all the time to get what our children need! I hope that the new oxygen company
is better at getting you the things that you need. I go through a national
company called Lincare and don't have any problems at all with them.
If there is anything at all that I can do from here to help, please just let me
know. Know that you and your family are in my thoughts and prayers and I'm
sending you a big {{{{{hug}}}}}!
Connie

Nervous Wreck

2007-03-22 05:19:44

Hello everyone,

No one seems to be posting much lately. Maybe it is the time of year with the holidays and all. I do think about you Jennifer with the anniversary of Joey's death approaching. I can only begin to imagine how hard that must be.

I am beginning to feel overwhelmed again, and like I am fighting an uphill battle. About a week ago, Debbie Bingaman in Dr. Ivy's office had ordered a pulse oximeter for us to use to try to determine if Becky's sats drop when she is having these more frequent breathless spells. Would you believe we still do not have the oximeter because our home health care company is Texas Childrens Home Health, and they can only take orders from a Texas dr., not a Colorado dr. They have tried to get our cardiologist here to sign the orders they need, and he continually puts it off.

Dr. Ivy had taken Becky off Vasotec which she was taking for the leak in her mitral valve because her blood pressure was too low with that and the Flolan. Then this past Monday when we went to the cardiologist he said that the echo shows that the mitral valve leak has gotten worse, and she probably needs to go back on the Vasotec. I'll talk to Dr. Ivy first before I do anything.

Finally, the day before Thanksgiving TCH's home health care called me and told me that if I used another home health care company that is national (which my oxygen company is) that they can accept orders from a Colorado doctor. So, they gave the referral to American Home Patient. But of course since it was the day before a holiday, they didn't have enough time to verify my insurance, talk to Dr. Ivy's office, etc.

Meanwhile, of course, Becky continues to look pale, and when I ask her how she feels, she will say "o.k.," but her tone of voice seems that she is not o.k. She is still having more frequent breathless occurrences. I have notified Dr. Ivy's office of all of this mess, so hopefully when they come back to work tomorrow they can put some pressure on this new company to get us the pulse oximeter.

Perhaps I would not be so upset but this reminds me so much of when Dr. S (our previous PPH specialist) kept putting off doing anything about getting Becky approval for Viagra, until finally she ended up in the hospital in a crisis, and came close to dying, and then was put on Flolan.

Please forgive me for complaining, but I get so tired of feeling like I spend a large part of my life fighting for something Becky needs.

I am taking antidepressants and anti-anxiety meds. so I can't say I am not receiving any help to cope. I am just finding it awfully difficult.

Thanks for listening (if you made it this far).

Pam (mom to Becky - 14 - severe PPH, congenital heart disease, scoliosis, polysplenia, ADD, etc.; Johnny - 12 - healthy; and Laura - 8 - healthy)

Re: [PHA_Parents] Trip to Denver

2007-03-21 19:36:36

Connie,

I just now noticed that Tony has ADHD and dextrocardia. Becky has both of those things, too, except for she has ADD, combined type, rather than straight ADHD. Guess we have more in common than I realized.

Pam

iwrite4court <kroert2@...

The trip to Denver went pretty well. It was a pretty fast trip,
though. We left Wednesday morning and got back Friday night.
Dr. Abman said that Tony's lung tissue looks really good. He has had
so many problems with his lungs that he expected them to be in worse
shape than they are. Dr. Ivy said that Tony's heart is in really,
really bad shape, which I knew anyway.
They are keeping Tony on the Tracleer, they took him off his
Nifedipine (they didn't think it was doing him any good) and put him
on Viagra. They don't necessarily think that this will extend Tony's
life expectancy, but it should make Tony more comfortable, should it
work for him. We are going to follow up with our cardiologist here
in three months (Dr. Abman and Dr. Ivy are going to talk with him)
and then we will go back out to Denver in six months.
I was so impressed with all of the staff out there. They are
absolutely wonderful people! So helpful, so compassionate, so
caring. This has to be a very difficult job for them sometimes
knowing the condition of some of these kids that they see. Everybody
was so good to Tony and so good to me and Tony's step-mother (who
went with me).
The important thing for me right now, and what is best for Tony, is
just making sure that he is as comfortable as he can be. I want to
make whatever time he has left the best for him. I now know that I
have done everything possible for Tony and what has been the best for
him. He was really a little trooper while we were out there
considering he was in a strange environment and he had to be sedated
for some of his procedures. He is such a great kid!!
Connie (mother to Tony, 13, pph, ADHD, autism, dextrocardia and
Samantha, 15)
To unsubscribe from this group, send an email to:

Trip to Denver

2007-03-21 16:43:14

The trip to Denver went pretty well. It was a pretty fast trip,
though. We left Wednesday morning and got back Friday night.
Dr. Abman said that Tony's lung tissue looks really good. He has had
so many problems with his lungs that he expected them to be in worse
shape than they are. Dr. Ivy said that Tony's heart is in really,
really bad shape, which I knew anyway.
They are keeping Tony on the Tracleer, they took him off his
Nifedipine (they didn't think it was doing him any good) and put him
on Viagra. They don't necessarily think that this will extend Tony's
life expectancy, but it should make Tony more comfortable, should it
work for him. We are going to follow up with our cardiologist here
in three months (Dr. Abman and Dr. Ivy are going to talk with him)
and then we will go back out to Denver in six months.
I was so impressed with all of the staff out there. They are
absolutely wonderful people! So helpful, so compassionate, so
caring. This has to be a very difficult job for them sometimes
knowing the condition of some of these kids that they see. Everybody
was so good to Tony and so good to me and Tony's step-mother (who
went with me).
The important thing for me right now, and what is best for Tony, is
just making sure that he is as comfortable as he can be. I want to
make whatever time he has left the best for him. I now know that I
have done everything possible for Tony and what has been the best for
him. He was really a little trooper while we were out there
considering he was in a strange environment and he had to be sedated
for some of his procedures. He is such a great kid!!
Connie (mother to Tony, 13, pph, ADHD, autism, dextrocardia and
Samantha, 15)

To Pam and Becky

2007-03-21 11:11:08

Jennifer,

Thanks for your suggestions about enjoying the here and now.

Becky's is kind of an odd situation. She has had this awful disease since she was 6 and now she is 14. When I was first told about it, I cried off and on for about 3 weeks. My husband, John was about at the end of his rope as to what to do with me. Finally, somehow God graced me (normally a worrier) with the ability to just pretend that everything was normal except for when we had dr. visits. Otherwise Becky was pretty stable for a long time - no Flolan, nothing else much to speak of except Coumadin, and then eventually Tracleer before the Flolan came.

Then this past year has been a real nightmare with her suddenly starting downhill, needing Flolan, and now on Flolan she is improved from when she was in the hospital in May, but it is very evident to me now as it wasn't when she was doing better, that there are not any guarantees with this disease as to what will work for how long and what the future will look like.

I do believe that Becky is in the best hands possible - Dr. Ivy and his staff. There are lots of people praying for her. I am just fearful - I don't want to hear again that she is getting worse (if she is).

However, I can see that staying within one day at a time would allow me to be more peaceful. I just don't know right now if I can do that.

But thanks for caring, Jennifer. It means a lot.

Pam (Becky's mom)
Jennifer Nelson <jennifern@...

Dear Pam,
I hope that you find some answers for Becky's breathlessness, and I
hope it is a problem that can be fixed.
I can identify with your worry. We went through a lot with Joey, as
well.
Joey's PPH was rapidly progressive, despite doing all of the right
things. After his death, the autopsy revealed no heart or lung defects
other than the PPH. But the pathology report, to his physician's
surprise, revealed some changes in his lungs which one would normally
associate with someone who had had PPH for at least 6-10 years. Joey
was not yet five years old.
We don't know why he was so young at time of diagnosis, why his PPH was
so severe and progressive. He was a rare case in a rare disease.
But we were blessed to have two more years with him after starting
flolan, two years in which the good days well outnumbered the bad.
I found myself getting worried about him frequently, but sometimes that
worry got to the point where I could not even enjoy the present. And
sometimes if I got real worried Joey would misinterpret me and think I
was mad at him. He knew his prognosis, but he was too young to worry
about it much. He just wanted to play, and he wanted us to play with
him.
So I used to repeat that Bible verse to myself about how the wedding
guests do not fast when the bridegroom is still among them. You can
spend so much time worrying about what is to come that you fail to make
use of the time you have. And the kids pick up on your worry and that
makes things worse for them.
Bill would remind me to slow down and just thank God for every day that
we had with Joey. Everything after his initial arrest was really a
bonus, because he should have died right there.
I found it easier to take things one day at a time. Just concentrate on
every day and try not to look too much at the big picture, because the
big picture for this disease is not always very pretty.
There is always the hope of new treatments on the horizon. Just take it
one day at a time, and know that you and Becky are in our prayers.
The anniversary of Joey's death is approaching. He suffered his
pulmonary hemorrhage on Dec.2 of last year and died Dec. 3. My "fluffy
friends", as Forrester calls them, a group of women I was involved in a
prayer group with, are planning a little memorial service at our church
and supper.
I also have this temptation to go back to the convent on the mountain.
If I can arrange to be the only one staying there overnight, perhaps,
now that I am not exhausted from the worry and cares of having a sick
child, perhaps I'll have the energy to run naked through the halls. But
if I'm not the only one there,and if it's not a real foggy night, I'll
have to pray with my clothes on. And if the weather is bad or my asthma
flares up I guess I'll just be stuck at home. I still hate to think I
could have missed a lifetime opportunity.
Please don't tell anyone you know who is Episcopalian.
Jennifer

To Pam and Becky

2007-03-21 08:04:35

Hi everyone,
Jennifer, I'm glad it was just appendicitis, something fixable! hope Emily
feels better. sometimes I believe that Maddie became ill to teach me some
much needed lessons. Since Maddie became ill, things that used to be hard
are not. I've learned to take comfort in doing all I can do for her and put
in rest in God's hands. and I have learned to take one day at a time and be
grateful for how well she does. I feel very honored to be her mother and
caregiver. Pam, I know these things are easy to say when things are going
well but when your child is suffering, you're scared and you just want to
fix it. I hope you figure out Becky's breathlessness and her flolan dosage,
it took months for us to balance the side effects with the benefits of
flolan. Maddie has had laryngitis for about 1 month, Dr. Ivy thinks it may
be from her chronic nasal congestion. He thinks the nasal congestion is
secondary to the Tracleer, so we decreased her evening dosage, but she
developed a headache and desaturated so we bumped her back up. I've ahd her
out of school for a month, she feels well but there is some much sickness
being passed around in school I'm not anxious to let her go back. She has a
tutor come every day to keep her caught up with her work so it's ok. Take
care Lori Heaton

To Pam and Becky

2007-03-21 03:57:24

Dear Pam,
I hope that you find some answers for Becky's breathlessness, and I
hope it is a problem that can be fixed.
I can identify with your worry. We went through a lot with Joey, as
well.
Joey's PPH was rapidly progressive, despite doing all of the right
things. After his death, the autopsy revealed no heart or lung defects
other than the PPH. But the pathology report, to his physician's
surprise, revealed some changes in his lungs which one would normally
associate with someone who had had PPH for at least 6-10 years. Joey
was not yet five years old.
We don't know why he was so young at time of diagnosis, why his PPH was
so severe and progressive. He was a rare case in a rare disease.
But we were blessed to have two more years with him after starting
flolan, two years in which the good days well outnumbered the bad.
I found myself getting worried about him frequently, but sometimes that
worry got to the point where I could not even enjoy the present. And
sometimes if I got real worried Joey would misinterpret me and think I
was mad at him. He knew his prognosis, but he was too young to worry
about it much. He just wanted to play, and he wanted us to play with
him.
So I used to repeat that Bible verse to myself about how the wedding
guests do not fast when the bridegroom is still among them. You can
spend so much time worrying about what is to come that you fail to make
use of the time you have. And the kids pick up on your worry and that
makes things worse for them.
Bill would remind me to slow down and just thank God for every day that
we had with Joey. Everything after his initial arrest was really a
bonus, because he should have died right there.
I found it easier to take things one day at a time. Just concentrate on
every day and try not to look too much at the big picture, because the
big picture for this disease is not always very pretty.
There is always the hope of new treatments on the horizon. Just take it
one day at a time, and know that you and Becky are in our prayers.
The anniversary of Joey's death is approaching. He suffered his
pulmonary hemorrhage on Dec.2 of last year and died Dec. 3. My "fluffy
friends", as Forrester calls them, a group of women I was involved in a
prayer group with, are planning a little memorial service at our church
and supper.
I also have this temptation to go back to the convent on the mountain.
If I can arrange to be the only one staying there overnight, perhaps,
now that I am not exhausted from the worry and cares of having a sick
child, perhaps I'll have the energy to run naked through the halls. But
if I'm not the only one there,and if it's not a real foggy night, I'll
have to pray with my clothes on. And if the weather is bad or my asthma
flares up I guess I'll just be stuck at home. I still hate to think I
could have missed a lifetime opportunity.
Please don't tell anyone you know who is Episcopalian.
Jennifer

Re: [PHA_Parents] Re:Emily is in the hospital-to Jennifer

2007-03-20 15:43:12

Hello everyone,
Emily is HOME!!!
She went through the surgery with grace, dignity and humor. I am very
proud of her. It's also great to be involved with a medical condition
for which there is a cure. No more worries about appendicitis.
I am very glad she did not become ill while she was overseas studying.
She had already finished this semester, having started in the summer.
the school year is apparently different in Europe. So she is living at
home and has a job at a department store wrapping gifts for the
Christmas Season. Her boss is very understanding, and it is a blessing
she doesn't have to worry about final exams or papers right now.
Why did Sean have his central line removed again? I hope they didn't
rip it out like they did the last time.
Love to everyone and thanks for your prayers.
Jennifer

Re:Emily is in the hospital-to Jennifer

2007-03-20 09:18:05

Dear Jennifer,

At least she has her sense of humor still ! I a, glad to hear you and Emily BOTH are well NOW, and that the only remaining "scars" are the one on her abdomen! I pray you will continue to be alright with your asthma. I get to see the doctor today for the lab results for this stomache of mine....

Sean had his central line removed AGAIN yesterday! We will be discussing oral medication next week at the doctor's office. Other than that, Dennis and I survived the granddaughter here this past 10 days with her little scratching fingernails (I never ealized 13 month old children had SUCH a grip!) with minr scratches and grabby marks. It was wonderful to chase a baby for the time. It is also wonderful to have a quiet house now. Ah the perks of age, I suppose!

Keep everyone posted on Emily's recouperation. What a thing to come home to after being in England!

Sending Love,

Evan

Re: [PHA_Parents] Emily is in the hospital

2007-03-20 07:35:34

Dear Jennifer and family,
We are so sorry to hear about Emily's appendicitis and surgery! And your asthma attack. Hope you are both recuperating well. You are in special prayer not only for the current situations but also in consideration of the upcoming anniversary. We are praying for a special blessing for all of you in the week ahead.
Our love to you,
The Macdonalds

Emily is in the hospital

2007-03-20 01:36:19

Hello Friends!
I was just about ready to leave to work this morning, and Bill had
fixed my morning tea when Emily came downstairs, complaining that she
had right sided abdominal pain and she wanted me to check her before I
went to work. As she was walking back to lay down on the sofa she
suddenly passed out in the kitchen, hitting her head and neck on a
chair on the way down. But she was still breathing, so thankfully we
didn't have to do any CPR. When she regained consciousness she said she
thought it hurt worse when she walked. After phone calls , a trip to
the E.R., labwork , a CT scan and surgery she is minus her appendix,
but still retains a bruised head from the fall on the way down. She is
in the recovery room now at Gateway Hospital in Clarksville, and will
be assigned a room. Bill is in the waiting area and I have come back
home breifly before leaving to pick Forrester up from school.
Earler this week, Bill and Emily had to come rescue me from work when I
had an asthma attack and felt unable to drive home.
As Emily said before her surgery, "It's just like old times, two
medical emergencies in one week."
I told the surgeon he had better not leave a bigger scar on Emily than
her brother has. Forrester had an appendectomy at age 11 and i am
sure they will be comparing notes.
Jennifer, mother of Joey,deceased, age 4, PPH, and Emily, 20 and
Forrester, 15

Re: [PHA_Parents] STARBRIGHT World

2007-03-19 14:27:48

Even though I haven't been a contributor to PHA Parents, I look forward to the posts and I've learned so much from all of you. But, it's been a while since I've gotten anything. Has everyone just been busy or am I not receiving posts?

I ran across information about the Starbright Organization, which has an outreach program called Starbright World. According to their website STARBRIGHT World is a private online community connecting over 30,000 teens and kids living with chronic and serious illness. I immediately thought of Pam and Becky. I wrote notes to that effect on the PHA message boards, but haven't heard anything, so thought I'd try here. The link is: http://www.starbright.org/projects/sbw/index.html

Please let me know whether it is of interest.

Thanks, Martha, mother to 17 year old daughter, Carson, PPH/PVOD and listed for a double lung transplant,

Martha Emmons & Hutch Smith
BIKEWORLD, INC.
848 Joe Clifton Dr.
Paducah, KY 42001
(270) 442-0751
(270) 442-4425 fax
info@...
www.bikeworldky.com

Re: [PHA_Parents] Trying to Find Houston PPH Children

2007-03-19 10:04:56

Pam, I have not given up trying to find someone for Becky. I will let you know as soon as I do.

Thank you for your patience.

Michelle L. Rintamaki
Kids With Heart National Assn for
Children's Heart Disorders, Inc.
1578 Careful Dr.
Green Bay WI 54304-2941
920-498-0058 phone/fax
1-800-538-5390 phone/ fax (inside the U.S.)
www.kidswithheart.org
michelle@...

Looking for books on congenital heart defects?
Check us out at http://www.kidswithheart.org/book_order.html

Want to connect to another family with your child's defect?
Register at http://www.kidswithheart.org/registration.html

CONFIDENTIALITY NOTICE: This message, including any attachments, is for the sole use of the intended recipient(s) and may contain confidential and privileged information. Any unauthorized review, use, disclosure or distribution is prohibited. If you are not the intended recipient, please contact the sender by reply e-mail and destroy all copies of the original message.

Trying to Find Houston PPH Children

2007-03-19 04:50:52

Hi everyone,

I know this topic won't pertain to most of you. But I am trying to use every possible avenue to locate PPH children or teens that live in Houston. My thought is that my daughter, Becky, could e-mail them first and if they seem to be mutually interested, I could get them together to meet.

This may sound nuts to some of you, but with getting homebound schooling, Becky is really lonely and wanting to find some other kids who have been through some of the stuff she has and can relate to her experiences. Also, she has always tended to be a bit different than "normal" kids her age, as she has always had medical problems from birth (congenital heart disease) and then she also has ADD, so for quite awhile she tended to be interested in younger kid interests than most kids her age.

Anyway, all this makes it more complicated, so I am trying to find her some sort of teen or child group for kids with some sort of medical problem, whether it is PPH or not.

Thanks.

Pam

Re: [PHA_Parents] support groups

2007-03-19 00:46:06

Sunny,

Thanks for all the suggestions. I am going to try them out and see if I can find something. Becky is really preoccupied right now with feeling lonely and wanting other kids nearby that she can talk to and occasionally do things with.

I'm glad you said what you did about the PHA conference. I have considered going before, but it would be a real hassle for me even without the money issue, which is an issue. I'd have to get off work, etc., etc. From what you said, it sounds like it isn't worth the effort. I can always get cassette tapes of the sessions that cover topics I want to know about.

Take care.

Pam (Becky's mom)
sunny scott <waterfallsbyme@...

Hey Pam,

When we were in Houston we went to Make A Wish stuff. Cool Christmas Party! There is a very strong Cystic Fibrosis group. The nice thing about PH people is they don't have to worry about the disease that CF kids give each other. We sometimes went to the PH support group but it was all adults. right before we left we were trying to get a PH camp set up. I had contacted the "Camp for all" and they said we can reserve a week. Jana and Stephanie, the pharmacist, volunteered to help staff it as did two cardiology nurses. But we moved. I was hoping that the Stibbs would do something. I know they are busy though. What about the CHIN or Cardiac Kids network. Sometimes they have older kids stuff. I think Child Life@ TCH would know how to get ahold of them. We did participate in the transplant support group for a while and that was helpful for me. Trey has been listed for a TX for 7 years. I know what you mean about feeling like your on your own. I wish that there was something for
the kids and parents of these kids. Although I went to the conference and saw alot of old friends from Texas I was very disappointed. As much money as it was I didn't get my money's worth. Good Luck. I guess it was my turn to vent or maybe I took someone else's turn oops!

Sunnie and Trey
Pam Adams <pcadams_2000@...

Sunny,

I wonder if there is another way to get acquainted with some of the cancer children's groups? We don't have an active Starlight here - I checked a few months ago. But Becky seems much more in need than before of having some kids her age who understand something of what she goes through.

Do you suppose the American Cancer Society would know about any groups like that?

It's just that Becky worries me some - she has started playing an internet game called Tibia. The game itself is harmless - like a video game, but the people playing the game talk to each other, and she has met a couple of boys on there who claim they are her age, but how does she know? We've all heard stories about the internet. So I have just reminded her she can't give out her address and phone number, and let her know why I am concerned.

She understands, I think, but at the same time she has a really strong need to connect with kids her age and she is lonely from being homebound schooled. There are some small group bible studies during the week at our church for high school kids, but I'm not sure that will satisfy her, because these are "normal" kids. I'm not sure how well she'll connect with them right now.

Anyway, sorry for going on so. This stupid disease does seem to present you with all sorts of problems you never even thought about.

Pam (Becky's mom)
sunny scott <waterfallsbyme@...

Connie,

So sorry. Having a chronically sick child is so tough no matter what the circumstances. Sometimes when we have felt like we are in left field and no one understands we hang out with the cancer kids. We met a group of them through Starlight. For us it is workable as they pretty much are in the same boat. With the pump and broviac and serious disease. If there is a Starlight near you join it. Most of them do other stuff besides wish granting. They have parties for the kids and monthly dinners where everyone gets together to eat and lean on one another. It is all free. The restuarant picks up the tab. My son loves going because no one stares at him because he is different. They stare because he is the same! they want to see what his pump looks like compared to theirs. Or what backpack he shows up with this month. He has 19 flolan backpacks. Also siblings are invited to everything and it was good for my other kids to see and talk to other siblings. I know I called the American
Cancer Society and they told me we are always welcome at their support groups. Also call your local united way and American Lung Association. They have a lot of support groups for grief management and stuff. Our little local hospital has a support group for caregivers. Try the childlife specialist at the childrens hospital you go to or the social worker. Or call Make-A-Wish. Some of the branches have monthly meetings and fun stuff to do. We wish you the best and remember this group of people are here for you.

Sunnie and Trey
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Fireworks!

2007-03-18 17:26:25

Dear Friends
Please follow this link for some fireworks!
http://homepage.ntlworld.com/als.king/
Love from Louise xxx

Re: [PHA_Parents] Visit to Dr. Ivy

2007-03-18 13:05:09

Connie,

Are you going to fly? If so, Debbie Bingaman can help you get approved to use Miracle Flights or one of the airline services for children who are in need of medical attention.

If you do fly, when you get to the Denver airport, if you take the Super Shuttle (it is blue), and get a receipt, Debbie Bingaman will have the social worker at the hospital reimburse you for the cost. The shuttle costs somewhere between $28 and $36 for two people.

Also, she will give you some vouchers for eating in the hospital cafeteria. They have pretty good food for a hospital cafeteria. That will help you with about two meals for both of you. If you need more, you could tell her that financially it is difficult for you, and it wuld help to have more meal vouchers.

Lastly, I always stay at St. Christopher House. It is a place for hospital patients and their families that is run by the Episcopal Church. They have nice clean rooms, a small kitchen on the first floor that everyone has access to and a refrigerator - you can buy things and put them in there like for breakfast so you don't have to eat out all the time, a laundromat there, vending machines, a few games for kids that you can borrow.

It costs about $39.00 per night for two of you - be sure and ask for a room with two beds. I did that this last time and got that for only $39.00. This place is about two or three blocks from The Children's Hospital where Dr. Ivy is, so you can walk from there. Since Becky has trouble walking very far, I brought our wheelchair from home which we rent, checked it on the plane, and that way I could wheel her from St. Christopher's House to the hospital once we were there.

There are also a few eating places within walking/wheelchair distance. There is a place called Hotcakes that has really good breakfast at pretty reasonable prices. They also service other food at night. There are also some places that will deliver.

If you have any more questions, just let me know.

Pam

iwrite4court <kroert2@...

I took some advice that I got about getting a second opinion for
Tony. With Pam's help (thank you so much) I have been in contact
with Debbie Bingaman today. I have sent some of the information that
I had on Tony to her and she sent me a list of other information that
they would like. I'll contact my doctors and hopefully won't get any
hassle about getting the information. Dr. Abman said that he would
like to see Tony as soon as possible. So it looks like we may be off
to Denver soon. Any advice for a first-time visitor to the
hospital? I can't thank all of you enough for your advice and
support on seeking a second opinion for Tony. Maybe there's some
hope. But my philosophy now is that if this doesn't help him, maybe
it can help somebody else. Debbie told me today that they are doing
some research on congenital diaphragmatic hernias, which was Tony's
original problem that he was born with. Thank you again, so much, to
everybody! This really means so much to me.
Connie (Mother to Tony, 13, PPH, etc... and Samantha, 15)
To unsubscribe from this group, send an email to:

Visit to Dr. Ivy

2007-03-18 01:48:58

I took some advice that I got about getting a second opinion for
Tony. With Pam's help (thank you so much) I have been in contact
with Debbie Bingaman today. I have sent some of the information that
I had on Tony to her and she sent me a list of other information that
they would like. I'll contact my doctors and hopefully won't get any
hassle about getting the information. Dr. Abman said that he would
like to see Tony as soon as possible. So it looks like we may be off
to Denver soon. Any advice for a first-time visitor to the
hospital? I can't thank all of you enough for your advice and
support on seeking a second opinion for Tony. Maybe there's some
hope. But my philosophy now is that if this doesn't help him, maybe
it can help somebody else. Debbie told me today that they are doing
some research on congenital diaphragmatic hernias, which was Tony's
original problem that he was born with. Thank you again, so much, to
everybody! This really means so much to me.
Connie (Mother to Tony, 13, PPH, etc... and Samantha, 15)

support groups

2007-03-18 01:44:15

Hey Pam,

When we were in Houston we went to Make A Wish stuff. Cool Christmas Party! There is a very strong Cystic Fibrosis group. The nice thing about PH people is they don't have to worry about the disease that CF kids give each other. We sometimes went to the PH support group but it was all adults. right before we left we were trying to get a PH camp set up. I had contacted the "Camp for all" and they said we can reserve a week. Jana and Stephanie, the pharmacist, volunteered to help staff it as did two cardiology nurses. But we moved. I was hoping that the Stibbs would do something. I know they are busy though. What about the CHIN or Cardiac Kids network. Sometimes they have older kids stuff. I think Child Life@ TCH would know how to get ahold of them. We did participate in the transplant support group for a while and that was helpful for me. Trey has been listed for a TX for 7 years. I know what you mean about feeling like your on your own. I wish that there was something for
the kids and parents of these kids. Although I went to the conference and saw alot of old friends from Texas I was very disappointed. As much money as it was I didn't get my money's worth. Good Luck. I guess it was my turn to vent or maybe I took someone else's turn oops!

Sunnie and Trey
Pam Adams <pcadams_2000@...

Sunny,

I wonder if there is another way to get acquainted with some of the cancer children's groups? We don't have an active Starlight here - I checked a few months ago. But Becky seems much more in need than before of having some kids her age who understand something of what she goes through.

Do you suppose the American Cancer Society would know about any groups like that?

It's just that Becky worries me some - she has started playing an internet game called Tibia. The game itself is harmless - like a video game, but the people playing the game talk to each other, and she has met a couple of boys on there who claim they are her age, but how does she know? We've all heard stories about the internet. So I have just reminded her she can't give out her address and phone number, and let her know why I am concerned.

She understands, I think, but at the same time she has a really strong need to connect with kids her age and she is lonely from being homebound schooled. There are some small group bible studies during the week at our church for high school kids, but I'm not sure that will satisfy her, because these are "normal" kids. I'm not sure how well she'll connect with them right now.

Anyway, sorry for going on so. This stupid disease does seem to present you with all sorts of problems you never even thought about.

Pam (Becky's mom)
sunny scott <waterfallsbyme@...

Connie,

So sorry. Having a chronically sick child is so tough no matter what the circumstances. Sometimes when we have felt like we are in left field and no one understands we hang out with the cancer kids. We met a group of them through Starlight. For us it is workable as they pretty much are in the same boat. With the pump and broviac and serious disease. If there is a Starlight near you join it. Most of them do other stuff besides wish granting. They have parties for the kids and monthly dinners where everyone gets together to eat and lean on one another. It is all free. The restuarant picks up the tab. My son loves going because no one stares at him because he is different. They stare because he is the same! they want to see what his pump looks like compared to theirs. Or what backpack he shows up with this month. He has 19 flolan backpacks. Also siblings are invited to everything and it was good for my other kids to see and talk to other siblings. I know I called the American
Cancer Society and they told me we are always welcome at their support groups. Also call your local united way and American Lung Association. They have a lot of support groups for grief management and stuff. Our little local hospital has a support group for caregivers. Try the childlife specialist at the childrens hospital you go to or the social worker. Or call Make-A-Wish. Some of the branches have monthly meetings and fun stuff to do. We wish you the best and remember this group of people are here for you.

Sunnie and Trey
To unsubscribe from this group, send an email to:

Awareness Month is Nearly Here!

2007-03-17 15:04:53

Awareness Month is Nearly Here!
With just days before what is anticipated to be PHA's most successful
Awareness Month in its history, there is still work to be done! PHA
staff has been busy sending action kits, pamphlets, brochures,
posters, CD's, press kits and other educational materials in response
to the hundreds of requests that have been pouring in.
As the Advocacy and Awareness Manager, I am amazed by the
overwhelming number of people who want to have an impact in this
year's awareness month. I am eager to see the fruit of everyone's
labor. I have a feeling that this will be an incredible month.
Now is the time to let PHA know what activities you are planning for
the month. A list of events will be updated as PHA is made aware of
them at: http://www.phassociation.org/Awareness/Awareness_Month.asp.
Please contact Cara Ugolini at cara@... or (301) 565-
3004 x113 to have your event posted. Thank you.

Bad News

2007-03-17 11:03:38

Connie,

I have been thinking a lot about you and your saying that you were wondering if you should seek a second opinion. I happened to think of what I did a few years ago that was pretty helpful.

Back in 2000, Dr. Ivy in Denver, who is one of the few pediatric experts in the U.S. in PH, agreed to review my daughter, Becky's medical records first without actually seeing her and giving me an opinion regarding the treatment being given, and whether he would recommend any different plan of treatment based upon it. I had the current dr. send him copies of the most recent echo, EKG, chest x-ray, cardiac cath records, etc. and he gave me an opinion. I was not charged anything for it other than the cost of sending the records by mail.

It seems to me that this might be a good place for you to start without having to spend a lot of money or make any big decisions about travelling to somewhere out of state. If you think you would be interested, I can give you his nurse practitioner's e-mail and telephone number and you could contact her regarding how to go about this.

I hope I don't seem too bossy - I am just concerned. Take care.

Pam (Becky's mom)

Re: [PHA_Parents] Bad News

2007-03-17 09:23:43

Pam:
Don't think that you are seeming bossy at all. I think it can help so much to
get input from somebody who has been through a similar situation and get other
ideas about what to do.
I am really struggling with what to do. There is a part of me that wants to
just try and enjoy whatever time I have left with Tony and not put him through
anymore surgeries or treatments. But there is the other part of me that, as his
mother, I have to do everything that I can to help my child.
I think it would be good to possibly have Dr. Ivy look at Tony's records and see
what he thinks. It would be a good place to start. So if you could send me his
nurse practitioner's email and phone number I will contact her to see if he
would be interested in looking at Tony's records.
Thank you so much for your input! Like I've said before, I feel so alone in all
of this and just really don't know what to do.
I hope that Becky is doing well! My thoughts and prayers go out to you and
Becky and the rest of your family!
Connie

Report on Trip to Dr. Ivy - Becky

2007-03-16 23:19:09

Hi again everyone,

Well, I thought I'd try to give a brief rundown on what happened on our trip to see Dr. Ivy last week. We went up on Monday, had tests and saw him and his staff on Tuesday, and came back home Wednesday evening.

Basically, Dr. Ivy's conclusion seemed to be "cautiously optimistic". He sai