Aug
09
    
Posted (Tina) in All Posts on August-9-2008


Man, this hospital is nice…and the views aren’t bad. A nice touch when you are pondering things and going through something heavy.

We left the hospital about 2pm today. Yippee! It is good to be writing this post from home this evening.

Ella did incredibly well last night. She slept solid the entire night. I thought the steroids would keep her up for a 4th night in a row, but I was pleasantly surprised. She slept from 9pm – 9am; I am sure she was exhausted from her lack of sleep these days too. I slept from 11pm – 6am, but those 7 hours felt like a dream!

Wow, I am not sure what happened. But Ella’s heart rate last night and this morning while she was relaxed and asleep were the lowest numbers I had ever seen. The only time the numbers have been even remotely close is mid-January in the NICU after they introduced sildenafil for the first time. This morning, I had to take a video so I can prove it to Josh. Her heart rate was fluctuating between 85-105. I have never seen them dance in the 80s before, ever. I knew that meant that she was very relaxed and had to be feeling better.

About 9pm last night, I weaned her oxygen down to 1 liter. She usually saturates incredible while she is sleeping – – it is always the awake time that is more dicey. But this morning, she was saturating well on 1 liter while awake too. Some might have argued to keep weaning, but I think the key with Ella is slow. So, we will likely stay on a liter for another 2-3 days. I want her to be rested and ready. Because we have not established a true baseline for oxygen requirement in the altitude and we want to be more on top of it, we may have to use a pulse oximeter during the daytime too so we can monitor and adjust accordingly.

We ordered a DVD from Shands to upload all of Ella’s medical records into the system at the Children’s Hospital in Denver. Unfortunately, they were having a tough time loading the images into their system. Josh tried viewing the images on my computer and it worked. Since I had the images handy, I thought I would show everyone some images that relate to this recent hospital stay.

This is a picture of Ella’s lungs back in mid-May right before we left Gainesville. She was more “dry” during the time of this xray.

Below is Ella’s chest xray from Monday, August 5th when she was admitted to the Children’s Hospital. You can see that the film is hazy. This is what Ella’s lungs look like when she retains fluid and is more “wet”.

Also, below is a picture of Ella’s hiatal hernia. So you can see her stomach filled with the barum fluid that radiology uses for contrast. Above and to the left, the round ball shape is the nissen fundoplication or nissen wrap (where Dr. Kays tied the lower part of her esophagus to the upper part of her stomach), to prevent the reflux back into her esophagus and prevent aspiration. While the wrap still looks intact, it has herniated above into her chest through the hiatus (the natural opening in the diaphragm where the esophagus lies). So now it is above her diaphragm area resting in her chest against the side of the esophagus. This is why they think that she might be gagging and retching more than normal.

Speaking of retching, she has not retched a single time today! Again, she is more dried out and I don’t hear her wrestling with any secretions, which is a nice change. I would love it if we could keep her dry enough to not have to battle constant secretions.

Ella is sure feeling more like herself today. It’s so nice to see those smiles!

Another day has gone by without hearing from Dr. Kays. All I can think is that he is super busy. I’m hoping to hear his thoughts soon.

Our neighbor showed our house for rent this evening (and continues to mow the lawn for us – they’re saints!). We’re still praying for the right tenant to occupy our home. We know that He has a plan…we’re trying to be patient and trust.

Finally, thanks for all the prayers. The support means so much during times like this past week.

James 5:11
As you know, we consider blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.



Tammy on August 9th, 2008 at 7:28 pm #

Ella looks much happier! I’m glad all is going well. Rest well……you all deserve it.
God Bless,
Tammy

Kelli Billman on August 9th, 2008 at 9:16 pm #

This is great news! Ella is clearly going for the gold in her own form of the Olympics!

Jim and Char Jordan on August 9th, 2008 at 9:57 pm #

WOW, she looks so sweet and pleasant. What a beautiful child. LOL

Joel Snyder on August 9th, 2008 at 10:20 pm #

Ella, I was so happy to help get you and Mom home today. You look great and I know you are feeling much better. I hope you have a great week and I will be checking on you later. Love,Grandpa!!!!!!!!!!!!!

The Laz Fam on August 9th, 2008 at 11:07 pm #

Amazing pics; beautiful girl! Thanks for all the info!

Roxie (Adrienne's friend) on August 10th, 2008 at 12:25 am #

So happy to hear you are home. Will continue to pray for His guidance in your lives and learning to balance Ella’s needs as she grows. Much love for your family, Roxie

Kathy on August 10th, 2008 at 6:44 am #

PRAISE GOD! I am so glad she is home, and she looks SOOO much better! I will continue to keep ya’ll in my prayers!

Vicki/CO on August 10th, 2008 at 8:20 am #

Oh, Ella, I could look at your beautiful smile all day long! You look so happy to be back home! Well, of course you are! We are so happy you are feeling so much better, precious one!

And Josh and Tina, I am continually amazed at the wonderful way you care for your precious Ella and the strength and stamina you have. You are wonderful parents, doing everything you can to take care of Ella, and persevering in the journey! God will continue to give you strength and courage for this walk, because He knew what was ahead when He blessed you with this precious, beautiful child. It feels like a miracle happened when Ella had such a good night on Friday, and then she had those low heart rates like you hadn’t even seen before! Praise God!

I wish I could express to you in mere words how much it means for you to post your journey for us to follow and to allow us the privilege of praying for you and praising with you! You have given us all a gift in the midst of your hard journey! I wish there were more I could do, but I will continue to lift you up to our precious Lord…that I CAN and WILL do! God bless you, all three!

Lizotte Family on August 10th, 2008 at 9:44 am #

Whoah! those pictures are amazing. It’s wild to see all the development that Ella has done this year. I will pray for Ella to dry up and get beter for you pronto. She is just so precious.
God Bless you and big xoxoxo
LL

Anne on August 10th, 2008 at 12:02 pm #

Thanks for including the x-ray pictures! Those were very interesting! Ella looks wonderful! You can tell she’s VERY happy to be home! Enjoy your Sunday!

Laura Marold on August 10th, 2008 at 8:47 pm #

Praying for another good night of sleep and a relaxing day tomorrow. It’s wonderful that you were able to share your images with the hospital staff. Also hoping and praying for the renters to be the right ones for you. Your neighbors sound terrific. Ella, you are so pretty with your rosy cheeks and beautiful smile. Love, Laura M.

kristin on August 11th, 2008 at 10:32 pm #

Techie Tina! You are forever amazing me on so many different levels! I am so grateful that you and Ella feel restored! Rest is so important.

The X-rays are amazing!! Ella–you look beautiful!! Glad you are feeling better—it shows well on your face.

Love you all,

Kristin

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