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message 1: by L & D (new)

L & D A year ago on August 3rd, my 4 month old niece sustained a severe brain injury due to lack of oxygen. they call it a near SIDS incident; she stopped breathing for almost 20 minutes and her heart stopped beating. Needless to say it was a tough couple of months at the offset. I spent every other night at the hospital with my sister, praying for recovery, praying for death, praying for it to end, cursing God and this baby for causing my sister so much pain. Baby A (my sister doesn't like her name to be out there in cyberworld without her knowledge) is now at home, on a trach (breathing through a tube in her neck) and being fed through a tube. She has made some progress, though very little. She cannot smile, swallow, crawl, walk, talk, roll over (you get the picture). My sister was a trooper for the past 10 months, she quit her job (she is a nurse) and stays home with A full time. A requires 24 hour supervision, so they have rotating nurses most nights and 3 days. My sister had hope.

Now, I am terrified. My sister seems to have lost hope saying things like, "she's not getting better" and "if she makes it through the summer." A has started to cry inconsolably (tears and muscle tightening) and her heartrate skyrockets to 190. They don't know why this is happening and tests are being run, but no answers as of 1.5 weeks of testing. Part of me (don't think ill of me), wishes A would pass on becaause it would end her own pain and my sister's. Yes, it would be terrible at first, but everyone would heal to some degree and life could go on. Life is not moving forward as of now. A is like an newbown who can't even take a breast or a bottle, sho doesn't coo or smile. The doctors are playing the we will see game, because there is no way to know if A will ever recover. She will never be normal, we know that, but will she ever swallow? smile? talk? sit up? Ne don't know. we are stuck waiting it out because she lives. But is she living? If she is cognitive, what kind of life is that in a body that cannot communicate? If she is not cognitive, is that a life at all?

Anyway, please don't think badly of me. I need some comfort and prayers so that I can be there for my sister and her family.

message 2: by Literary (new)

Literary I want to say that I hope I can be of any help to you in the way of support. We must all be there for each other in this world. It seems sometimes cruel and the deeper meaning for situations as this is hidden and difficult to understand and accept. My heart goes out to you and your family and you will be included in my prayers and thoughts. Stay strong as best you can.

message 3: by L & D (new)

L & D Thanks Margaret. Just getting to air it out there, without fear of judgement is extremely helpful. Planning a movie trip with my sister and friends to get her out of the house. Hopefully it will help us both.

message 4: by Shea (new)

Shea | 346 comments Lansing,
You, your sister, A and your whole family will be in my prayers. I completely understand how you are feeling and do not think bad of you at all. Being in healthcare I often wonder if all our great medical advances really are for the best. Many years ago, poor A would not have been "saved" in the first place and perhaps that is better. Let us know if there is anything else we can do for you.

message 5: by L & D (new)

L & D Thanks Shea. Yeah, my sister was a PICU nurse before going coporate as a nurse manager for a non profit and we had had this discussion many times before it happened to her. She had said she would not want her child to live like this, and then it happened to her. The doctors, when giving then thier "options" basically said they would not help her die comfortably. A would basically drown in her own spit. On top of that, her in laws kept talking miracles and such. I don't know what I would have done. But I believe in my heart that it would have been better if A had just passed on peacefully in her sleep taht August morning.

message 6: by Sherry (new)

Sherry Lansing, what a terrible situation for you and your family to bear. I have to agree with Shea and sometimes wonder if all the medical advances are always to our advantage, you and your family will be in my thoughts...

message 7: by L & D (new)

L & D Thanks Sherry.

message 8: by Sera (new)

Sera Lansing, I, too, will you keep you and yours in my prayers.

message 9: by Lilo1 (new)

Lilo1 Gurule (goodreadscomlilo1) | 11 comments I will also keep u and your family in my prayers
i couldnt imagine going through something like that i know it must be hard but just stay strong for u and your sister at times like this thats when u gotta stick together the most.

message 10: by L & D (new)

L & D Thanks Sera and Lil.

message 11: by Literary (new)

Literary How are you doing L & D?

message 12: by L & D (new)

L & D Hanging in there. Baby A can now swallow about 1/2 teaspoon at a time. Its a start. My sister seemed to be a bit better when we went to the movies.

Thanks for asking.

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