Thursday, March 8, 2012

Tanner came to the hopsital from work.. it was the first time he had left her, but I called with a not so good update and he came right back. He is such a good daddy and a comfort to her. I just came back from leaving the room for the first time and took a little walk. Wow. I had lots of anxiety about this surgery and knew it was going to be tough but I had no idea. There is no way to prepare yourself to see your child suffer. And the worst part for me is being able to do nothing for her.

To go into a little more detail, now that Tanner is here trying to comfort Bela, she was awake from 3:30 a.m yesterday until about midnight last night. Then she slept very horribly off and on for the next 5 or so hours. Starting at about noon yesterday she started throwing up very forcefully. She got a lot of meds to try to help her but everything seemed to just make it worse. We were told to start a sedation med at 10:30 and I kept waiting for it to kick in. By 1 or so I asked to go up because it wasn't helping. She had periods where it seems like she might have been hallucinating they thought, and then her whole body would shake from pain. And all she wanted was a drink. And I couldn't give it to her. I was told to not give her any liquid because it would've made her throw up, but she was thrwoing up anyway. She would finally doze off then would quickly jerk herself upright all the sudden and scream out. At 5 a.m the nurse came in to check on her and realized the sedation med had never been connected to Bela. She hadn't been receiving it the whole time. I do not blame her.. I actually have no idea how that happened because the tube was clamped so the pump should have been beeping to let us know there was a problem. It never did. It took me a while to be over it, it was a mistake and it's okay, but it caused a lot of unecessary pain for Bela and it's hard to not think about that. When it started to kick in at 5, guess who came knocking.... stinkin xray lady. Who proceded to turn on all the lights, uncover her, lift her up to place the plate underneath her and totally make her upset again. Those are the moments in here where I want to yell at someone. I know they're just doing what they're told, but it is so hard to have been in here all night and watch what she went through and have someone pay that no attention at all. SO finally she slept a little this morning, but it only lasted a couple hours and she has been begging for a drink since about 8. She tries everything...'please, mommy, just a little bit'. I couldn't stand it anymore. I'm so glad Tanner is here now. We are almost to the time to send her to get her PICC line. It's another procedure under anesthesia so it kinda stinks, but she is still on too many meds and needs a more permanent line. We were hoping to have her off these meds but she still needs them. Once she comes back and wakes up we will try giving her small drinks and see if the vomiting will stop. I am so ready for this day to be over. She is the strongest little person I know and one day I hope to be able to tell her how completley amazing she is.

15 comments:

Angie Milne said...

I can't stop the tears as I read this... I wish with all my heart that there was something I could do for her. For you.. I'm so sorry bela has had such a rough 24 hours. Praying that everything goes well with the new line and it gives her what she needs to feel better. Love you so much

Circle of Friends Preschool said...
This comment has been removed by the author.
Miriam Andrus said...

Praying for you and your sweet family!

Christene Horlacher said...

Oh my goodness Avery. My heart aches for you and for Bela. What a tough little lady she is. I am so glad that you have Tanner there with you. I can only imagine how hard this is for you as a mother to see her go through all that she has to go through. But she has proven that she is a fighter and she will continue to fight. I hope and pray that things go as smoothly as possible with her continued healing. Love to you and your family.

Camille Gould said...

I am sooo sorry...that is heart wrenching. My heart breaks for all that Bela is being put through, it's terrible...talk about being pushed to your limits. She is certainly one amazing and special little girl. I can't even comprehend how Tanner and you are making it through right now. We are praying for all of you.

nicciwoffinden said...

Thoughts and prayers to you and Bela and Tanner and your family.

Tice said...

I don't ever know what to say Avery. Just know how much I love that little girl and her mom. My Bella keeps asking how "the other Bela" is. We love you guys.

The Simmons Family said...

I am so so sorry. I know how hard it is to feel helpless. I am all over saying "NO xray now.. come back later." I had them giving Owen torodol IV for pain management, as it worked SO much better than the icky Morphine. I wish Owen had a PICC line instead of just his CJ line in his neck, because when they removed that one, they had no way to draw labs. So since I refused any more sticks.. we had no labs. It is SO much harder emotionally when they are older and for that reason, I am dreading the Fontan. PRAYERS for Bela to find come comfort and rest. Day 2 and 3 post op are the hardest!!!

The Simmons Family said...

Also.. are they giving her potassium? That made Owen SO SO sick to his stomach!!! As soon as we stopped it, he was fine. He did puke off and on for six weeks post TV repair still. Breaking the rules and letting her drink or have a popsicle is fine in my opinion. Why make them suffer any more. I snuck all kinds of things. That may make me a bad mom, but Owen was just a little bit more comfortable.

emcghee said...

Ave I hate this for her. I don't know how you stand it. I cry just reading it.

Jill said...

Oh Avery, I am so sorry. I am grateful for your updates - they bring tears and I just can't imagine it...but I will pray for sweet Bela and her amazing parents! Paige is asking about Bela and it is so sweet to hear her prayers. We are all thinking of her and your family!

Susie and Trent said...

Sweet girl, we are praying for her here in Washington! Thanks for the updates, heart hugs from the north. :)

Melanie said...

This breaks my heart. Sweet little Bela. I am praying that tonight is better for her. I am so so sorry for how painful this has been for all of you. Thank you for the updates- we think about Bela all day and pray for her (and you and Tanner) throughout the day.

S and K said...

I'm so sorry it was such a rough day. I so hope the rest of the day has gone much, much better. Sweet little Bela, I can't believe how strong she is! And so are her parents! Thanks for the updates. Still praying constantly for you all! Love you!

Trish said...

Has anyone told you how "totally amazing" YOU are? Bela is also- your family is beautiful- this post broke my heart- I'm a nurse (NOT PEDS), and when "accidents" like that happen, it's a hard thing to bear- I can't imagine having that happen with a child who is obviously in so much pain... what a terrible, awful, no good, very bad day... being in your position- I'd want to yell at someone too. Your sweet girl remains in my heart, thoughts and prayers. Thank you for the updates, I hope for them, and am so happy when i find them.