Archive for October, 2008

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?

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October 28, 2008 at 9:53 pm Leave a comment

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!

October 27, 2008 at 9:09 pm 1 comment

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!

October 21, 2008 at 9:16 pm 1 comment

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.

October 20, 2008 at 9:33 pm Leave a comment

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.

October 19, 2008 at 9:49 pm Leave a comment

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.

October 16, 2008 at 9:46 pm Leave a comment

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?

October 15, 2008 at 8:54 pm Leave a comment

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