Dale called to tell me that Izzy's left lung is worse today
despite all of the CPTs to open lung. They have now put her on
high-flow oxygen. Hopefully, they will not have to intubate again.
And, she ate half of her morning feed by bottle this morning.
Unfortunately, they can't have her work too hard because of her
lungs full of gunk, so she couldn't do much more. I'm brining our
own bottles in this morning, so that we can get a faster flow and
hopefully, more food in a shorter period of time. I hate the n-g
tube!!! I hate it mostly because it adds to her GI problems and
exacerbates them, no matter how good it is for her nutrition.
Many people have asked what they can do for us while McKenzie is in the hospital, but the only things we need are not possible for people to give--more time, cloning Dale and I, and a new living room lamp. But now, there is something you can do. Several of the heart moms started a letter writing campaign to ask Oprah to help spread awareness of CHDs. With awareness comes more understanding and more donations for research funding. It is the only way for us to start. Unlike so many diseases that have major organizations raising money for the cause, there is no such organization for CHD. So, it is up to heart families and friends to do all of the work without ad campaigns and celebrity endorsements. So, I'm asking you (some of you a second time) to write a letter regarding your experience with CHD, even if it is just reading the Izzy's carepage. Every aspect of the CHD is important to show the effect on the community at large. At the carepage cp: WhereThereIsLifeThereIsHope, a new post was put up about the project and they started a new website for it http://www.ourlettersofhope.com. They extended the deadline for letters since they didn't get enough. Please write a letter if you can. Deadlines are end of May.
Also, if you haven't done so already, write to your congressperson and senator to ask them to support the Congenital Heart Futures Act.
Thanks,
Melonie
Many people have asked what they can do for us while McKenzie is in the hospital, but the only things we need are not possible for people to give--more time, cloning Dale and I, and a new living room lamp. But now, there is something you can do. Several of the heart moms started a letter writing campaign to ask Oprah to help spread awareness of CHDs. With awareness comes more understanding and more donations for research funding. It is the only way for us to start. Unlike so many diseases that have major organizations raising money for the cause, there is no such organization for CHD. So, it is up to heart families and friends to do all of the work without ad campaigns and celebrity endorsements. So, I'm asking you (some of you a second time) to write a letter regarding your experience with CHD, even if it is just reading the Izzy's carepage. Every aspect of the CHD is important to show the effect on the community at large. At the carepage cp: WhereThereIsLifeThereIsHope, a new post was put up about the project and they started a new website for it http://www.ourlettersofhope.com. They extended the deadline for letters since they didn't get enough. Please write a letter if you can. Deadlines are end of May.
Also, if you haven't done so already, write to your congressperson and senator to ask them to support the Congenital Heart Futures Act.
Thanks,
Melonie
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