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Tuesday, August 6, 2013

JOYFUL

Pin It I said I wouldn't be back on today.... But sometimes things change. And I didn't want to keep anyone hanging when here we are just sitting in front of Little Einstein's. Ivy with both eyes closed, for the moment, exhausted from this long day. Me with huge wide eyes, living on caffeine today! Filled with joy and relief to be passed this procedure and one day closer to having my family together again!
I finally got my eyes and hands on little peanut at about 1:30 this afternoon. She had blood coming out of her mouth as she tried calling out for me. It looks like they must have cut her somewhere when they intubated or extubated her. I have not found the source yet but it continues to cause bleeding. She wanted to sit up... you can't do that for 4-6 hours so we had some, "Somebody help me! Get me outta here! Help!!" Going on. Once she understood what we were waiting for and why, she calmed down and being very loopy from the meds still she started calling out to all the nurses! "Hi friend! You doing ok? Ya? You are? Ok! 
Then moves on to the next nurse. Hilarious! Had the nurses in tears laughing!
Then she suddenly started bleeding from every place they attempted to put an IV this morning. Oozing blood everywhere.  They attempted IV's in each foot, each arm, one hand, one foot. All were bleeding. They finally got an EJ in her neck (So uncomfortable!) and that was bleeding too. Her mouth, her nose, lots of blood. They decided to turn off the heparin drip early and put her back on her coumadin tonight. Then she ended up needing a blood transfusion so we are actually in the process of that right now. They ran labs to check INR and she was 8.5! No wonder she's oozing everywhere! 
She ate a few cheetos, drank a lot of water and seems to be uncomfortable and anxious. She is on oxygen for her sats right now. When we take her off she drops to the high 60's so she clearly has some recovery to do tonight, the cath was long and took a toll on the little peanut. Any way, the end of this update is the part I'm so excited to share!
Ivy's nurse from the transplant team came in to see me tonight. While she did not speak of her overall right or left side function or the future as far as Ivy's heart goes, they are saving that for our appointment with the whole team on Thursday. She came to visit us tonight because she could not wait to tell me that Ivy's pressures are NEAR NORMAL! Her pulmonary hypertension has dropped more drastically than they ever experienced in just 3 months and they are ecstatic! She will no longer require oxygen!!! Did you hear that.... coming home with NOTHING hooked to her! She will stay on Sildenofil until her next cath (no date for that as of yet but guessing 3 months from today) and then wean off right before that cath to measure true pressures with no assistance from the medication. This crazy expensive medication is not covered by our insurance so as absolutely out of control happy happy happy as I am for baby girl, I have to be honest and tell you what a financial relief that will also be to Bryan and I. 
The news on her coronary artery is that there is a suit has scar tissue growing all around it and the scar tissue has basically pushed the coronary artery to a nearly closed surgical clip right next to her RCA. Scar tissue grows around foreign objects and this scar tissue that has grown has caused her coronary to be nearly closed in one area. It is not the area with the holes. It is lower and it was successfully ballooned today. Since she is so young they felt that a stint was not an option but it will likely need to be ballooned again during her next cath. The great news is that after it was ballooned, it showed better flow! 
Alright, back to cuddling my little peanut! She is waking up and she has a tummy ache :(

Romans 12:12
Rejoice in hope, be patient in tribulation, be constant in prayer. Pin It

19 comments:

April Carpenter said...

Awesome! We serve such a mighty God! Praying for you and the little peanut!

Anonymous said...

Thanks This post makes me so happy I'll sleep with a smile now hi I'm Mike Elble from Atlanta and I've been following you guys for awhile now ivy looks so much like my Leila and we went through a spinal surgery when she was three. So I can kinda relate to what you're going through and I know how alone one can feel Be strong

Anonymous said...

Praise The Lord for his goodness!

likeschocolate said...

What wonderful new! Praise the Lord!

Betty said...

Bless you little miracle girl! You are one tough kid with a lot of living and loving to do - oh - and Cheetos to eat!

bytheriver said...

wonderful news!

Georgea's Mommy said...

So thankful for good news!! Love to all!
Amy

Melody Lietzau said...

This is wonderful news. Sildenaphil has been a miracle drug for Hannah. She has been on it for three years now. Mary there is a company called caring bridges that covers our co payment for it. You should look into that. love you and sending big hugs your way.

Sarah Lynn said...

Lovely to wake up to this news, and looking forward to hearing she is feeling better.

dawn said...

She really is a rockstar. Go Ivy Go...just like you always do but now you do it faster and better. So happy for you Mary. Hugs.

DiJo said...

For some reason the words, "His love endures forever" comes to mind.. I continue to be in awe of God's faithfulness and protection over Ivy Joy... What a blessing to hear of the miracles that He continues to do in her body!!!! Praying that her little body heals quickly so you can be home soon!!!!

Hugs,
Di

Paige said...

Thrilled to hear this!!!! Praying for you all and so happy for your deep sigh of relief!!!

Jo said...

Rejoicing with you as I read this news....She is a fighter!! You go girl....Hugs,
Jo and Leah

Jo said...

Rejoicing with you Mary as I read this post. Ivy is one fighter...You keep um going girl.
Hugs,
Jo and Leah

Anonymous said...

Mary - this sounds like such good news. Those pressures are the big thing!! I have faith that God will cause collateral vessels to grow and help out the RCA. Ivy is young and her heart is still growing. It all sounds like such a miracle!!! I'm am just overjoyed for you. Sorry the little peanut has to be uncomfortable. Beth

Big Happy Family said...

Mary, lots of prayers for Ivy. I hope tomorrows meeting goes well. You are in my thoughts constantly.

Anonymous said...

Continued prayers for precious Ivy Joy. ~Holly

Aus said...

Thanks for the updates - what a little angel / trooper you have on your hands!! Why is it that our kids just seem to "understand" that this is necessary and so they just have to "deal with it"? Wow -

prayers continues - great joy for the news -

hugs - aus and co.

Shay Ankerich said...

Blessings and love to you both and SO thankful for this amazing news!!! XOXO

 
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