No Hope Given

Today I spoke to yet another mother of an ARPKD baby who was given no hope of survival.  This baby unfortunately did not survive. This was my third conversation with a family within the last month that doctors did not give any hope and did not even try to save.  This is so depressing to me and just so stupid! I don’t get it. Why not try and save the baby. Why not?????? This particular family lives in a big city and saw 24 specialists prior to giving birth and not one gave any hope. And these specialists included OBGYN’s, perinatologists, pediatric nephrologists, radiologists, neonatologists…..  The baby died 3 hours after she was born.  Not to mention the doctors refused to even try amniotic infusions and then refused to give the mother a C-Section and she endured 36 long hours of labor before the baby was finally born. And again it brings back so many memories. What would I have done in that situation if 24 doctors, or even just one or two, said to me there was no hope for survival and it will only prolong things and possibly cause the baby pain to even try. Would I have insisted? Would I have forced the doctors to put Gabe on the ventilator when they were telling me there was no hope. Gabe would have died if he had not been put on a ventilator after he was born. He would have died if they took him off of the ventilator after just 3 hours. I am so thankful for the doctors we did have. But I often wonder how different it would have been to have a diagnosis of ARPKD before he was born. Would things have been different. Would the doctors not have tried so hard to save him? How can we educate these doctors in all of these cities all over the world. We live in America in 2008 and doctors are still not even trying to save ARPKD babies. And it is happening all the time.  How can one person like myself educate these people and stop this from happening? How can we convince these doctors that all ARPKD babies deserve all the treatment possible to try to save them from the very minute they are born?

Bliss

There’s nothing like being away at a girl’s weekend to relax and realize how much I miss my boys!  They had a fun boys’ weekend though and it was good all around for me to be away. Three of my girl friends and I drove up to the Norwich Spa on Friday and stopped to shop on the way! Then we went to Mohegan Sun (a gambling resort) for dinner and some blackjack! After an hour and a half at the table with only laying out $40 to begin with I walked away with $85 (a profit of $40). My grandpa Seymour would be proud!  (I come from a family of gamblers)  Then Saturday we slept until 10, went to breakfast, drove around Norwich, and then went to Mystic to do more shopping! Then had massages (oh so nice) and then out to dinner again. Sunday we had facials and then went to lunch and shopping again. There was a theme here: shopping, food, shopping, food, relaxation, fun….  Ahhhhhh

And then back to reality. Of course the reality of it depressed me but it was good to see the boys. Oh are they cute!!  All four of them!

Book Swap

I volunteered to be in charge of a book swap at the boys’ elementary school. It took place tonight during Reading Night and I have to say it was a big success. We asked the students to each bring in at least 2 books to swap before tonight. I then set up the room and put the books out in grade order. Then after Reading Night (they listened to somewhat well known people read books) the children all came in and were able to pick out a book. Originally we were not sure how many books would be donated so we thought each child would only be able to take home one or maybe two. But each child was about to take home at least four books. Granted we did not have as big of a turn out as we would have liked, we received way more books than we could have imagined. It was a really nice feeling and I got a lot of compliments on it.  I have to say I’m pretty proud of myself!  This whole being a mom and being involved in my kids’ school is a lot of fun. Now only if I didn’t have all the other crap in my life to worry about!

Interesting

I went to an interesting service tonight at my temple. Tonight is a holiday called Simchat Torah which is a celebration of the Torah. I really like this service. Nate was also being consecrated today as a new Sunday school student. At the beginning all of the students like Nate were called up front and given a blessing. Then they were each given miniature torah scrolls. Then we danced around the temple seven times to account for the seven days of creation.  Then they unrolled an entire Torah scroll and read the very beginning and the very end.  It always touches me when blessings are done over my boys.  Usually in these blessings we are asking for G-d to grant them peace and happiness in their lives and it makes me somewhat sad. I hope they do find peace when they get older and are happy people. I hope this disease does not bring too much sadness into their lives. I hope by us giving them this religion and giving them happy experiences that they will find happiness and peace.

Frustrating

I just don’t understand why people feel the need to post comments on public places and write in false information. It’s frustrating to me. I also don’t understand why one organization feels the need to bad mouth another at every chance they get. And really why can’t people just be involved in both since they both have the same goal. Although only one organization actually believes that. The other one thinks they are the only one and likes to talk about it ALL THE TIME! Of course this post really doesn’t make since to most of you but it does to me. And it feels good to get it all out. I left the list serve because of all of this and now it is on Facebook too, which is frustrating me because I love Facebook and don’t want all of that negativity there too! I really just want to advocate for my children in the best way I can.

The Walk

I had an interesting dinner tonight with someone who is possibly interested in being the walk coordinator of the Hudson Valley 09 Walk.  He wanted to meet with me and a few other people to see if we were interested in walking and helping out. I was pretty adamant from the beginning that I will walk but will not be part of the planning process.  It would be sad for the walk to end and not happen in Hudson Valley but right now I cannot commit to helping out with any more walks.  I have so much on my plate and am too stressed out and need a break.  I think this person is going to volunteer to head the walk. We’ll see what happens.

And on the walk subject… we are attending our 2nd Walk for PKD on Saturday in Manhattan. It’s stress free and should be fun. I’ll let you know how it goes.

More “bad” doctors

I did a call tonight to a family who just had a baby with ARPKD and had called in to the Foundation to find out more information. Their baby was born just over 7 days ago with “no hope for survival”. That statement in and of itself really infuriates me. How does a doctor truly know that there is “no hope for survival”. It angers me that these doctors are making these decisions before the baby is even born. What frustrates me more is this is happening everywhere and all the time. Especially in this day and age with the technology we have to save babies. I understand they do not want to try so hard to save a baby and cause pain and stress on the baby and the family if ultimately there is no chance. But ARPKD is not a terminal disease and no one knows the outcome. Every child is so very different.

This family that I spoke with happens to live in a small town. The doctors were not going to even put the baby on a ventilator. They told the parents they would clean the baby up and hand her to her parents and she would die within 5 minutes.  This is how the parents had to go through the last few months of their pregnancy. With no hope and the thought of only holding their newborn to then have the baby die in their arms. Then miraculously this baby came out crying and breathing on her own. Now this really doesn’t happen too often, especially without amniotic fluid for so long. We don’t know how long I didn’t have fluid for but Gabe needed to be put on a ventilator for one week after he was born. If the doctors had not tried to save him he would have died. There are so many babies out there that needed the ventilator and are now doing okay. There are so many families who were told there is no hope for survival yet their children are alive. And then there are so many families out there who were told there is no hope and they shouldn’t even try to save the baby and their babies died. I often wonder how many more babies would there be living with ARPKD if every doctor tried to save them and gave them a fighting chance. How can we educate these doctors about ARPKD? How can we save more babies with ARPKD?

Back to Reality

Matt and I were in DC for the last 5 days without the boys. As much as I did miss them it was really nice to get away.  That is why the blog has been so quiet!!  We really did a ton of fun things while we were there and I plan on posting about them, but not tonight. Right now I have to make the boys lunch for tomorrow, unpack, and go to bed!

So this isn’t a boring post I am going to add my story here that I won the award for on the jewelry site. The site is amypetersstudio.com. The contest was to write in what inspires you and this is what I wrote:

My three boys inspire me. Two years ago two of them were diagnosed with PKD (polycystic kidney disease). My oldest son was six at the time and is now 8 and really takes it all in stride. He takes a pill twice a day and needs to drink extra water and has to urinate a ton. But for the most part he just deals with it. His doctors often comment on how good he is. He has always been a sweet boy but it shines through with this. My middle son who is five is healthy but he also inspires me by his strength and how he worries about his brothers. He helps by giving his little brother his medicine every day. And the baby who is now 2 and not really a baby inspires me as well. He is just a happy go lucky toddler who really doesn’t realize what the road ahead has in store and just lives his life. He takes his medications (all three of them twice a day) without complaining and just has fun. All three of my children inspire me in different ways. I know they always will. I wish I had their strength, energy, youthfulness, creativity, sweetness, naivety, and zest for life. I hope they always have these qualities. 

The Debate

I have to admit I am not watching the debate for various reasons. One is I had a long day and then a PTA meeting from 7 to 8:45. Then I came home and made a carrot souffle for dinner for tomorrow for Kol Nidre (the beginning of Yom Kippur). And now I am in bed with my lap top and my book and exhausted. I need to finish a flyer I am doing for a book swap at the boys school (yes, I know I committed myself to something else) and then I really want to relax in bed and read.  And mainly because I know who I am voting for and why.

But I thought I would post this excerpt my dad emailed me. It’s interesting and not too politically charged on one side or the other as far as Democrat vs Republican. (At least I don’t think it is but I don’t understand all of it and I also am not the best person to talk about politics with. I know the issues I stand for and the ones that upset me but I don’t know much more than that!) But here it is:

545 PEOPLE

By Charlie Reese

Politicians are the only people in the world who create problems and then campaign against them.

Have you ever wondered why, if both the Democrats and the

Republicans are against deficits,  WHY do we have deficits?

Have you ever wondered why, if all the politicians are against inflation and high taxes, WHY do we have inflation and high taxes ?

You and I don’t propose a federal budget.   The president does.

You and I don’t have the Constitutional authority to vote on appropriations.   The House of Representatives does.

You and I don’t write the tax code, Congress does.

You and I don’t set fiscal policy, Congress does.

You and I don’t control monetary policy, the Federal Reserve Bank does.

One hundred senators, 435 congressmen, one president, and nine Supreme Court justices 545 human beings out of the 300 million are directly, legally, morally, and individually responsible for the domestic problems that plague this country.

I excluded the members of the Federal Reserve Board because that problem was created by the Congress.   In 1913, Congress delegated its Constitutional duty to provide a sound currency to a federally chartered, but private, central bank.

I excluded all the special interests and lobbyists for a sound reason.   They have no legal authority.   They have no ability to coerce a senator, a congressman, or a president to do one cotton-picking thing.   I don’t care if they offer a politician $1 million dollars in cash.   The politician has the power to accept or reject it.   No matter what the lobbyist promises, it is the legislator’s responsibility to determine how he votes.

Those 545 human beings spend much of their energy convincing you that what they did is not their fault. 

They cooperate in this common con regardless of party.

What separates a politician from a normal human being is an xcessive amount of gall.  No normal human being would have the gall of a Speaker, who stood up and criticized the President for creating deficits.   The president can only propose a budget.   He cannot force the Congress to accept it.

The Constitution, which is the supreme law of the land, gives sole responsibility to the House of Representatives for originating and approving appropriations and taxes.  Who is the speaker of the House?   She is the leader of the majority party.   She and fellow House members, not the president, can approve any budget they want.   If the president vetoes it, they can pass it over his veto if they agree to.

 It seems inconceivable to me that a nation of 300 million can not replace 545 people who stand convicted — by present facts — of incompetence and irresponsibility.   Ican’t think of a single domestic problem that is not traceable directly to those 545 people.   When you fully grasp the plain truth that 545 people exercise the power of the federal government, then it must follow that what exists is what they want to exist.

 If the tax code is unfair, it’s because they want it unfair.

 If the b udget is in the red, it’s because they want it in the red.

 If the Army & Marines are in IRAQ , it’s because they want them in IRAQ .

 If they do not receive social security but are on an elite retirement plan not available to the people, it’s because they want it that way.

There are no insoluble government problems.

 Do not let these 545 people shift the blame to bureaucrats, whom they hire and whose jobs they can abolish; to lobbyists, whose gifts and advice they can reject; to regulators, to whom they give the power to regulate and from whom they can take this power.  Above all, do not let them con you into the belief that there exists disembodied mystical forces like ‘the economy,’ ‘inflation,’ or ‘politics’ that prevent them from doing what they take an oath to do.

Those 545 people, and they alone, are responsible.

They, and they alone, have the power.

They, and they alone, should be held accountable by the people who are their bosses provided the voters have the gumption to manage their own employees.

We should vote all of them out of office and clean up their mess!

Charlie Reese is a former columnist of the Orlando Sentinel Newspaper.

 What you do with this article now that you have read it is up to you, though you appear to have several choices.

1.     You can send this to everyone in your address book, and hope they do something about it.

2.     You can agree to vote against everyone that is currently in office, knowing that the process will take several years.

3.     You can decide to run for office yourself and agree to do the job properly.

4.     Lastly, you can sit back and do nothing, or re-elect the current bunch.

 

 

YOU DECIDE, BUT AT LEAST SEND IT TO EVERYONE IN YOUR ADDRESS BOOK, MAYBE SOMEONE IN THERE WILL DO SOMETHING ABOUT IT

Pulled in many directions

That is how I feel most days. Or actually on all days. I feel like I have a hundred things to do and never enough time to do it. And one thing that is hard these days is that Matt and my parents are on my case constantly about cutting back and relaxing more. But, I want to be one of those moms who does it all and with ease!  I know that is not realistic but I wish it were. I want to be a great mom, work part time, be involved with the PTA, and have time for me too. Now that’s in my dream world. But since PKD is part of my life I also want to be very involved with the PKD Foundation.  It’s just hard to do all of these things and then hear about it from Matt. He keeps telling me to simplify my life.  I would like to simplify my life by getting rid of my Meniere’s Disease and the boys’ ARPKD. Other than that I like the other things I do.  If only I needed less sleep and there were a few extra hours a day to do things. It’s fun to dream, huh.