Tuesday, February 10, 2009


I was just about to update the blog ranting and raving about how frustrated I am that Gracie seems to have so many obstacles and that it seems like nothing can go smoothly for her, but before doing so I read the blog of another heart baby who was suppose to have her Glenn this week and now doesn't seem to be a good candidate for it. Her parents may be faced with one of the hardest decisions that they will ever have to make. Ironically this baby's name is Gracie too...she has had a rough go from the beginning and is seriously a miracle. Please pray for her and her family, they are in need of extra strength, support, and comfort.

As for my Gracie, she is doing well with all things considered. Today was a hard day; not that anything happened, though lots happened. Grace definitely kept her sweet nurse busy---she didn't even get lunch until almost 4pm!!

Around 11am Grace needed to be paralyzed to take down the dressing on her art line, it was oozing blood and we needed to see why. Since we still need the line, she was paralyzed so she wouldn't move and pull it out.

At 1:30pm she had a blow out causing her to get really POed and making her nurse, another nurse and a tech have to spend almost 30 minutes changing her bed, bathing her, and then getting her to calm down and bring her heart rate and blood pressure down. At this same time it was discovered that Gracie has developed a terrible yeast infection under her neck. Within hours it spread from one ear to the other and is even spreading to the top of her incision. Gracie is now on oral anti-fungal meds and hopefully that combined with a special powder will work fast.

Grace was also started on methadone since it seems like the boluses of the pain meds she has been on aren't doing much---it calms her down, but not as much as we need. She really loved the methadone, she slept for most of the day after she got that.

Her lungs haven't improved, right now we are still trying to find the happy medium between drying her out and keeping her electrolytes high. We really are hoping that she will start losing that fluid in her chest and lungs, because now she is pulling fluid from other parts of her body, like her eyes and she really doesn't have it to spare.

Oh how I wish that I could take Gracie's pain and irritation away and allow her to have a healthy heart that is whole and complete. But I am grateful that she is doing so well. I am grateful that she is at Primary's with wonderful nurses and doctors who genuinely care for Grace and want her to excel as much as I do. I am so appreciative that they value my opinions and input about Grace's care and are willing to patiently listen to my concerns and answer my many questions, even if I may have asked the same one over and over again until I understand the answer.


Kimberly said...

Oh D, I am so sorry! Doesn't it seem like when it rains, it pours! I know it is easy to get sucked into all of the negatives of the experience. But I like that you were able to refocus on the blessings that Gracie has received by being in a wonderful hospital, with a great team, having many people praying for her. She is a fighter. She will continue to fight, as will her mommy and daddy! I can't imagine the pain and suffering you guys are going through. But as I was reading your blog, I couldn't help but think of the Savior. I'm sure Heavenly Father wanted to take away his pain and suffering. But he knew that Christ needed to endure those things as part of the plan. I know it is difficult to see your sweet little baby suffering. But through each of these trials or obstacles, she is getting stronger. She is growing. She is being blessed to be surrounded by so many people who love her and are praying for her. Just remember Deanna that you are not alone. There are many who know what you are going through. There are many who are praying in your behalf. There are angels round about you who will strengthen you during your moments of weakness. I love you! Please let me know if there is anything that I can do for your family. Remember that there are many people praying for you, Jason, and especially Grace. Draw from that strength.
Your sister

Melanie said...

We will continue to keep Gracie in our prayers. I know it's not easy...Peyton was in the hospital for 6 weeks after his Glenn with all sorts of things. We wish you all the best and hope that Gracie will continue to get better even if it's a small thing everyday. Also, Peyton was put on Methadone and Ativan after his Glenn and he even came home on both of those because they are so addictive. Let us know if we can help in anyway!

Melanie Page
mom to Peyton - HLHS

Gourley said...

Hi, I am the father of Carter Gourley. He is a HLHS Baby too. We were in the hospital the same time as Jason's brother I believe. Ryker and my son are the same age. Is Jason related to Rkyer? Anyway, i hope that you are doing well. Your Gracie looks wonderful. Our Prayers are with you.

The Simmons Family said...

We're praying for Gracie to start feeling better soon so she can be exubated. It's so hard not to rant and rave because the whole situation is frustrating! Our little babies are going through so much pain and fighting for their lives. It's aweful to watch them suffer. I like to say they were given extra strong spirits to deal with all the pain.

When we were told Owen needed a transplant and the Fontan was not an option... my heart ached and I was angry. Not at anyone or anything... just angry that he had already undergone the Norwood and Glenn and for nothing. He was going to need a new heart regardless. It's not easy.

We are tough women with extra tough kiddos and supportive hubby's. Life is okay. We are blessed!

Prayers from AZ

Michele said...

Thank you for mentioning our Gracie on your blog. That was very thoughtful of you. We heart moms know how painful the ups and downs can be in this whole process. Your Gracie looks a little like mine, she is a cutie. I hope things will improve for her, even though the progress may seem REALLY slow. It always feels slow doesn't it? Baby steps, these cuties take small baby steps towards recovery.