Wednesday, January 20, 2010

A horrible day, then a peaceful day, then a nightmare

God - I'm exhausted. The morning started with the appointment with the genetic counselor based in the office of the doctor we hate. She was taking our blood for the karyotypes on us in case we want to try again. I brought my records with me, which I only had because I asked MY OB's nurse (who is fantastic) to get them for me, since the asshole doctors office hadn't bothered. There were several discrepancies I wanted clarified. The doctor ourtight lied in the report - he said he spent an "extensive amount of time answering the parents questions." BULLSHIT! He dogded every single one. The thing that enraged me was that I specifically asked about the heart and brain defects and there were two very serious ones that he did not even mention, that I had to look up from my records. I then found out this morning that the lab reran my son's tests (I don't know why - I was too shocked to ask) and found that the piece missing was not as big as they thought. This killed me, there are living children out there that have this same deletion. Granted, they don't have all the defects that Aiden had and are all pretty much vegtables - but I just can't believe that I'm just being told this now. I was so enraged that I all but ran to the car and screamed as loud as a could into my jacket. I think I damaged my vocal chords.

After this lovely morning we picked up his ashes at the funeral home and my poor husband just about lost it trying to open the stupid, ugly plastic box they came in. We had some healing because we took some ashes to our favorite beach and had a little ceremony for Aiden. That part was very peaceful and helped clear some of the unbelievable rage. It started raining as we left and I thought that was perfect, the rain would wash his ashes out to sea and he would be part of the ocean I love.

The rest of the day was bad. I had the worst nightmare that something was wrong with my daughter and I couldn't get to her. I couldn't make myself wake up at first and when I did I swore I heard her crying for me, even though she was safe at daycare. It gave me the most bone deep terror until I woke up completely and is still bothering me.

I am wrung out. I wish I could take tomorrow off too.

4 comments:

  1. oh jen. i don't know what to say. it all sounds horrendous.

    one thing at a time. one foot in front of the other. and if you need to stop for a while, i'll sit with you.

    thinking of you, still. xx

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  2. God this sounds horrible. If you can, get your pathology report and go get another set of eyeballs to read through it and explain it and talk to you -- a set of eyeballs attached to someone who cares. Really, there are people out there like that. If you can email me your location, I may be able to find someone who can recommend a doctor.

    Go easy on yourself. I too have had those nightmares about my daughter. And to go through that on the same day as releasing his ashes? You have more strength than I ever will.

    Thinking of you all.

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  3. Oh, Jen. I had to go back to work after just two weeks, too. So hard. And the doctor visit sounds just awful. The what-ifs that run through our heads after having to make such hard decisions for our children are bad enough, but to also feel that you didn't even have all the information...how awful. I second Tash's recommendation to find another doctor to go over your pathology report and karyotypes when you get them. And I can completely relate to the fears for your living child - as well as, like I said on the last post, the impatience with tantrums or crying and the subsequent guilt. So sorry you had such a tough day.

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  4. Thanks all - fortunately the SHARE leader here is a registered nurse that specializes in genetics and my sister is an doctor just starting her OB fellowship. Between the two of them I have good resources for stuff like this. I was just blindsided by the lack of communication about something so damn important. I think I am going to get someone else to request my entire records (maybe my sis) so that I don't have to deal with them anymore.

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