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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Wednesday, December 19, 2007

We've hit the wall!!!!

I am done, I don't know how to work this anymore... I thought we would be scheduled for surgery the first or second week of January but we aren't going until the *17th...don't wipe off your glasses that is the date I was told.. I tried oh so hard not to hurt any one's feelings as I rambled.. The but but but but.....It wasn't the schedulers fault, she didn't need the melt down... So I hung up the phone and burst into tears and called Jeff.... We both fumed, me more than him... then we decided to be proactive. While he called the cardiologist I talked with the Ped (thanks Dr. Mashkuri) and the social worker (thanks Laura) and Jennylin (thanks).. Bawling the whole way through some of the conversations.... I guess our thing is... We thought they said he couldn't wait any longer, he needs it soon... He needs it while is doing good.. Now there are so many things that can happen....I want to be able to love every minute with him, but those minutes are terrifying if he NEEDS this and I can't help. He will be nine months if we wait until then... This surgery was supposed to be done between 4 and 6 months.... Anyway.. I am expecting many phone calls.. Hopefully we can sort this out... I just hate having Alex be labeled as ANOTHER patient... I am never like this. I usually can see the light at the end... But I don't have anymore patients...grrrrrrrr.....Am I being unfair???????

5 comments:

Angie said...

Brynn! You are not being unfair at all! You are just being the best mommy you know how to be. You are looking out for Alex, and that is what you should do! This is a really hard time for you. If you need anything, please PLEASE let me know! I would love to help out in any way possible!

P.S. I am sure you were a lot nicer than I could be!

The Curtis Family said...

Brynn,

Good for you for being proactive and making some phone calls. Even if it doesn't change anything, you will at least have the comfort knowing that you tried and didn't just sit by twiddeling your thumbs. Also, we received your Christmas card today.... SO CUTE! I need to be better about sending out cards. Good luck. I will keep you guys in our prayers. I am sure something will work out.

---Allison

berrymom said...

Brynn,

You are not being unfair. I think you did exactly the right thing. As a mom, you have feeling about your baby that the doctors can't have and you are right in letting them know what you feel. I love you and will keep you in my prayers.

Jen

Mindurs said...

Brynn,

I am sorry!!! I can see why you are so frustrated, especially since this surgery has been rescheduled a bizillion times. I hope your calls did you some good and the surgery will be pushed up sooner. We will continue praying for little Alex and your whole family.

Anonymous said...

Brynn and Jeff,
Hang in there, you are NOT being unfair. Sometimes an "in your face attitude" is all it takes, even if its uncomfortable. Peace will come. Love Jason and Mindy Brown