I wanted to make sure to write a new post and update everyone on the last two weeks.

Once we checked out Ella’s heart and lungs via echo the day before Thanksgiving, the next theory for her pass out spells was due to reflux. Per the last post, we ended up increasing her dosage of Zantac and adding Children’s Pepto (calcium carbonate, three times per day). We went through Thanksgiving and a few days after without any pass out spells. There were times that she came close, but she did not pass out. Also, I tried to dial back on ingredients in her blenderized diet and go very basic.

Then, the Tuesday following Thanksgiving was her first appointment for therapies to start. From that point, she made it clear that she was not going to tolerate occupational, physical or speech therapy. Normally, I leave the room with the two dogs and let her “play” with her therapists. She does great. Now, I was not allowed to leave the room or be out of sight.

Over the past weeks, she had become increasingly clingy. Even without therapists, she has been extra fussy. I would feed her or change her diaper and need to wash my hands or walk to the kitchen (she can still see me) and she just loses it. I rush and hurry back, fearful of a pass out spell. Or she would finally get distracted by playing with her computer or watching a video, but then there is extra whining in the background. Normally, just holding her helps it to cease, but sometimes not. In other words, she is whining constantly. To me this means that whatever underlying medical condition is present, it was starting to worsen.

Some days we were lucky with no pass out spells. Other times, it would happen a handful of times throughout the day. Because the Zantac and Children’s Pepto did not seem to be curing her of the pass out spells, we went ahead with the upper GI & small bowel series that her doctor wanted her to have completed.

We spent all last Wednesday at the hospital for the test. They asked me to arrive for check-in at 10am with an appt at 10:30am. They were running behind and we did not start until 11am. Initially, they placed 180ml of barium contrast dye via her g-tube and took a bunch of xrays in different positions. Of course, she was not enjoying this process. The good news: her nissen looked intact so it did not appear that reflux was occurring.

Then, we had to go to the reception area and come back for xrays throughout the day. First, it was 15 min, then 20 min, then 35 minutes, then an hour. Normally, it takes about 4 follow-up xrays and 2 hours for a healthy kid to go through this test. Last time in June, it took 4 hours. By the time 6 hours was rolling around, I was getting concerned too. The nurses and xray techs were asking if I had to change her diaper at all. Nope. No barium dye diapers yet. Since it was late in the day and they were pretty sure it had reached her colon, they took one last xray of her upper chest. That seemed strange to me, but then again, nothing is ever too weird when it comes to Ella.

Last Friday, Dec 10th, they called to let me know that they noted something suspicious on the films. To make sure, they asked us to come back for a chest CT scan on Tues, Dec 14th (this morning). They wanted a high density scan which takes 20 minutes, so this meant that she was going to need general anethesia for the scan. We went through the normal process of no food and water and drove to the hospital. They asked us to check in at 10:30am. As usual, they were running behind and did not come out to get Ella until 12 noon. She was finally under anethesia at 12:30pm with the scan starting. By 1:15pm, she was in the recovery area and they came to get me. Unfortunately, they waited a bit too long because Ella was already awake with a nurse trying to hold her to calm her down. The nurse had no idea how much Ella does not like nurses and that she was worsening it by holding her. But I applauded her efforts and as I walked in the room, Ella motioned for me. One thing is for sure: she knows her Mom and she wanted me.

The nurse mentioned that Ella’s heart rate seemed very low – in the 50-60s – so they gave her some Rubidol via IV to help increase her heart rate. I explained that 50-60s is common for her when she is deeply relaxed and asleep. I guess the staff was unsure, so they administered a medicine to help increase her heart rate. I held Ella for about 45 minutes in the recovery area. She was still fussy. Normally when she comes out of anesthesia, some cuddling keeps whining at bay. But today, she was still whining while I was holding her. These are the moments that I wish my daughter had speech, so she could tell me how and what she is feeling. It is just a helpless feeling as a parent to feel like there is nothing you can do to make her feel better. By 3pm, we were home and I was giving her some Pedialyte. She had not been given any fluids or food since the prior evening. As of now, she has had three large boluses of Pedialyte and we will try some food via g-tube before she goes to bed this evening.

Around 5pm I misplaced my cell phone and realized that I left it in the car. Sure enough when I picked it up, there was a voicemail from the hospital. The voicemail confirmed a nightmare: Ella has reherniated and there are loops of bowel above her left diaphragm.

We’re supposed to receive a call tomorrow to let us know the next steps as far as when Ella will be admitted for surgery. They do not consider it emergent in nature, as this has probably been slowly happening and worsening over the past several months. It couldn’t have happened too long ago. She just had bowel surgery in April (and they removed all of her bowel, repaired it and put it back into her cute body). Plus, she had the same two tests in June (upper GI with small bowel series and chest CT scan) and this did not show as an issue. So sometime between July and now, this likely occurred. I wonder if it happened with all her violent retching every day over those months; I guess that is one theory. If nothing else, it probably explains why she has been having the pass out spells, first coming on slowly and then increasing in frequency. It can’t feel good to have bowel in your chest!

Please pray for Ella – that she will remain stable, have a successful surgery and a quick recovery. And please pray for us as her parents. It is so hard to get this news. Our daughter has been through so much and continues to endure so many challenges.

Here is a poem I came across recently from another mom that struck a chord:

I Had Plans

I had plans…
such perfect plans…
of how our life would be…
A perfect job, a perfect home…
a perfect family.

It seemed like it should be that way…
(of course we’d have our trials)
But most days would be sunshine…
Laughter,love, and smiles…

And then, as I held pictures…
of my child, not yet born…
And heard the words “a heart defect”…
My own heart became torn.

First came the “Hows”…
Then came the “Whys”…
Then came the question…
What if my child dies?

Hiding for a little while…
trying so hard just to cope…
Wondering will she be okay?
living each moment with hope…

I thought that perhaps, someday…
I could breathe with a sigh of relief…
And know that she will be okay…
And let go of my grief…

It seems that moment doesn’t come…
As each day starts anew…
I realize I must start each day…
By giving her to You…

Whatever Your plan for her life is…
I trust that it’s written with care…
And You are God no matter what…
(Even when life isn’t fair)

So I will really LOVE today…
So thankful that she’s here…
And give her too many kisses…
And try to let go of my fear…

I’ll try not to be so resentful…
And remember that life is for living…
I’ll smile just knowing, she’s here with us now…
And hold tightly to each day we’re given.

~Stephanie Husted