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.
