Posted (Tina) in All Posts on September-19-2008

Ella slept better last night. It was nice to get 5 hours of solid sleep.

As I would wake and look at her numbers, her heart rate was still fast 160ish (the lowest was 140) and I could hear her breathing 60-70 breaths per minute. This was while she was asleep.

Everything went well until I had to feed her in the morning. We were set to do 70ccs of formula and 30ccs of Pedialyte. She barely tolerated the food, but we managed through it.

By the time she woke up, she did not look good. She was behaving like she was fluid overloaded. The fussy behavior along with lower saturations, high heart rate and increased work of breathing were all the clinical signs.

When we went to weigh her, she had significant weight gain – 7.9 kilos to 8.18 kilos overnight. It seems that the “bolus test” of Pedialyte fluid yesterday afternoon (168ccs of extra fluid) pushed her over the edge. While she was on the scale, she was crying and not consolable. All of a sudden, she let out a bunch of diarrhea on the scale. Her tummy was hurting. The docs think she had too much Pedialyte and it gave her the runs. Thankfully, it was only once this morning.

When the docs did rounds, they caught Ella at the height of her misery. This was good for them to see her in this condition. Sometimes you try and explain all the clinical signs, and yet when they examine her, she looks better. That can be frustrating.

When Josh and I brainstormed on what might be causing the high heart rate, we looked online. We found that an “uncommon” side effect of Captopril is a rapid heart beat. Gee, leave it to Ella to be in the 1% category for side effects! In any case, we thought about it more and Ella did start having this problem when they gave her the Captopril. And actually, it has gotten worse as they have increased her dosage. The bummer: the Captopril is having such a positive impact in that she is not requiring as much diuretic and her blood pressure is lower. Her recent echo shows improvement. But now, we think the Captopril might be the reason that her heart is racing.

To be honest, the docs this morning look puzzled and don’t really know what to do with Ella. They gave her a one time dose of Bumex to help get the fluid off of her this morning. Once the dose hit her, she urinated 520 grams in a 4 hour timeframe. That is a lot! Within that time frame, her color looked better and she was feeling more comfortable. Also, they reduced her Captopril to 1.0mg per kilo this evening and left her aldactazide the same. Her heart rate is still high, but she was breathing a bit easier. Right now, she is asleep and her heart rate is 165 (should be 105-115).

Since the docs are scratching their heads, they invited Dr. Steve Abman to rounds tomorrow morning. Technically, that is Ella’s pulmonologist. But he is consulted mostly when the other docs can’t figure something out. He is an amazing doctor. I’m hoping that he will have more insight. I’m preparing my heart and mind for the worst news: they might have to perform a cardiac catheterization. This is a procedure to examine blood flow to the heart and test how well the heart is pumping. We have avoided it thus far because it is invasive. And they figured if they could try the Captopril and it worked, then there would be no need for the cardiac catheterization. But since the Captopril is not turning out to be the magic bullet, I would not be surprised if Dr. Abman recommends the cardiac catheterization, so that he has more information to analyze.

Josh is working late, so Grandpa came to have dinner with me and hang out. During shift change, I was holding Ella and talking to the nurses. Grandpa was getting ready to go downstairs to get us some sodas, saw the commotion and smoke was coming off his tennis shoes as he headed down the hallway. Ella’s g-tube fell out. That was fun. NOT! The nurses we were assigned to tonight (one regular nurse and one student) didn’t really know what to do. I stepped in and got the g-tube back into Ella. It’s not hard to do, just not fun.

I gave Ella a bath tonight and changed her cannulas. The tape we tried earlier this week broke out her face. Her poor skin is raw. So we are going back to the good ol’ Medipore tape that seems to work best.

She looks less puffy tonight which is good. I’m hoping for another successful 5 hours of sleep tonight. The sleep is happening only because we are not pushing food in her belly overnight. We are just doing one bolus feed before she goes to sleep and one in the early morning.

We’re blessed to have such an amazing little girl. Thank you for all the support and prayer coverage. It really makes a difference to know that there are lots of people out there that love Ella and lift the three of us up in prayer.

Tara Hayes on September 19th, 2008 at 10:32 pm #

and that is what I am doing right now…praying for the three of you!
sweet dreams,

Shalena Millward on September 19th, 2008 at 11:07 pm #

My heart is with this wonderful child. She does not know me yet but I love her just the same. I know that if God brings us to it, he can bring us through it. I wish that I could be there for her mommy and daddy. Here is a big hug and kiss for you dear little one.

Laura Blackwell on September 20th, 2008 at 12:00 am #

Prayers for rest and Ella’s comfort.

Kathy on September 20th, 2008 at 6:04 am #

Ohhh goodness, I am so sorry she is struggling again. I will be praying for her and ya’ll and for the doctors to figure out what is going on!

Just remember: He will do exceedingly above all that we can ask or think. Ephesians 3:20

Thank you for that scripture you posted yesterday. It was something **I** needed!

Tracy Mitchell on September 20th, 2008 at 7:29 am #

Praying Ella’s doc can figure out the right combo. Praying for you guys constantly!

Elizabeth Norman on September 20th, 2008 at 8:36 am #

As my husband and I and our mini-schnauzer, Sweetie Pie, were walking down the hill this am to get our once weekly coffee treat, I was thinking of you guys and precious Ella. I pray that one day soon you will be able to have her out enjoying the beauty of Colorado.

Joel Snyder on September 20th, 2008 at 8:58 am #

Ella, I had a great time visiting with you last night. You sure looked and felt much better than the day time. I am so glad to hear that Dr. Abman is going to visit and I will be praying that he and his team can find the answers so that you can continue to progress. I will check on you later. Love,Grandpa!!!!!!!!!!!!!!

Williamsburg on September 20th, 2008 at 5:03 pm #

You have to wonder if everything that Ella is teaching these doctors shouldn’t be worth a discount on fees and services… Probably not, I guess, but her clinical file should be worth a gold mine, I’d think. You all are worth even more than that to us, however, as you are to God. Sleep well tonight, sweet Ella (and Mom and Dad). Love, healing, blessings and peace. XOXOXO

Tammy on September 20th, 2008 at 6:51 pm #

Tina and Josh… have earned your medical degrees and then some!
I am always amazed at what the patient, parents and family members can tell the medical professionals to help screw in the light bulb just a little bit tighter.
The lord has his purpose, it’s just tough sometimes hanging in there until you learn what that might be.
Sweet Ella…I pray that the lord will cuddle you and bring you comfort.


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