Wednesday, August 15, 2007


We were told last night that Gabi would not be getting a trach today, they didn't have room on the schedule. We were frustrated, I cried (like I always do), and then we vented to a few nurses. We completely understand that all the doctors have their own opinion and we respect and appreciate that, but we just wish we could find more consistency. It's like no one will allow trying something for longer than a week because they want to try their way. Every week a doc comes on, in case you didn't know that. So every week it is something new. She needs longer than a week to try something, she needs more time obviously with everything so why would they think she could change in 7 days when it is new every 7 days...can you sense my frustration???

It only gets the ENT resident came in, he said they had a slot they could fit Gabi in today for the trach, he just needed to check with Dr. Tieves to be sure she was stable enough. She gave her thumbs up and I signed the consent form...Yipee we were finally gonna make a change and make things a bit easier on my poor baby! Jason had left early this morning since they told us it was a no go. I had been on the computer with him, so I gave him the green light...Get up here NOW!! The nurses and I were scrambling around her room taking all her babies off her bed, she had her pooh blankey and she was ready to go! Then the ENT attending doc came in...oh, I don't think we can proceed with the procedure...she is too puffy and she needs a custom trach. The custom trach provides more flexibility and with her being as puffy as she is she needs the custom trach for more comfort or her skin will break down from rubbing so much and we already know she has issues with that.

So you want to talk about being disappointed. Luckily I got ahold of Jason before he left, so he is working hard and will be up later this afternoon. I say it's time for me to take a break, I am gonna leave for a bit. After all she is sleeping so not a whole lot I can do. She needs to rest and hopefully push off some of these fluids. Keep saying prayers for my angel and hopefully I get the news we want on friday!!!


Nicole said...

Praying for your beautiful Gabi!
HUGS, Nicole

Shannon said...

Oh the yo-yoing of your emotions is awful. I often wish docs would get together with each other and decide before they tell you conflicting thing and toy with your emotions! So sorry, sweetie!

Also, I started on your button, but haven't finished it yet! I'm going through a bit here, too! But you just worry about your sweet girl there. You've got more than enough on your plate!

Anonymous said...

I can feel your frustration and know you are hurting for Gabi. I know you are tired of being told to "hang in there". So don't. Go outside and kick a can, scream, pull you hair, cry, but get it out! It will do both you and Gabi some good.

All of you,and especially Gabi, are in my prayers. Wish so much I could come up there to see you.


kaden's mommy said...

Micah, I definately understand where you are coming from. We had the same issues with the doctor's there. It seems like they do not communicate and that they are kind of competing to see who is right. I don't know if you have been told about the patient advocate, but that may be a good person to vent to. You could probably ask your nurses about that. Or maybe, if you have a social worker up there, and I think you should (we all know you have been there long enough)talk to her and maybe they could set up a meeting and you can let them know how frustrated you are that they aren't sticking to a plan. I feel for you, because we were in the same spot. Be strong and voice your opinion, as you know you, you and Jason know that angel better than anyone and if you disagree with how they are going about things tell them. Always thinking of you's a little early but sweet dreams Gabi. "Kaden's mommy"

Anonymous said...

Micah & Jason,
I am so sorry to hear you had a rough morning. I know it's frustrating still being in the hospital, but Gabbie is strong, just like her parents. She is an amazing little girl. Tell Lil' Miss Gabber I said she better pick up the pace with this recovery. I hope the rest of the week improves for all of you.
Nurse Zabrina

Anonymous said...

Gabi,you hang in there little girl. Hopefully Friday is your big day. I am as frustrated as your mommy & daddy with all the changes, but I do know you are in really good hands and for the most part you have had some really special nurses taking care of you. Its comforting to know they really care about you little angel, but who could not love you!! You stay strong and soon Mimi will get to hold you...I can't wait!!! I love you baby!!!
Love, Mimi T.