Posted (Tina) in All Posts on January-15-2008

Ella is stable today – – praise God!

I think she is doing better than yesterday, although it has only been 24 hours since her dose of Lasix via IV. Tomorrow will be more telling (as of recent, she starts to experience respiratory compromise approximately 48 hours after the IV Lasix dose).

Nurse Marla has her today and thinks that she is doing better than she was doing on Sunday, the last time she took care of her. That means a lot too, since Nurse Marla knows Ella so well.

She has been weaned down to 700ml of oxygen as of 5pm tonight which is the lowest it has been in days. Her urine output is higher today than Sunday. This likely means that the increase dosage of Bumex is having a positive effect. It may not end up being the final solution, but it does indicate that maybe administering higher dosages of diuretic work better for Ella.

Another note of praise: she does look better today and she has had 25% of her food as breast milk over the past 24 hours. This means that there is a good chance that the breast milk is not having a negative impact (for those of you who joined us later, breast milk and standard formula have a higher amount of fat which can cause more fluid to flow from the lymphatic system. Portagen has lower fat and was used to help control Ella’s fluid output. Although it has been since mid-October since her last round of chylothorax, they did not want to switch or try breast milk or standard formula until now).

A chest x-ray is ordered for the morning. If the chest x-ray does not show significant fluid accumulation in her pleural cavity, they will increase the breast milk to 50% of her food intake.

We did get some tough news today. The results of Ella’s echocardiogram that we were given last Monday were verbal (the nurse practitioner was standing next to the cardiologist as he was reading the results). If you remember, they shared that news with us at the meeting last week.

Well, the written results of the echocardiogram came back today. Instead of no pulmonary hypertension, like we were previously informed, we were told that she has moderate to severe pulmonary hypertension. I am not sure how a mix-up that different occurs, but the good news is that they realize she has it now and can begin to treat it appropriately. So, starting today they are giving her Sildenafil (Viagra) three times per day. Sildenafil selectively reduces pulmonary vascular resistance and has shown to cause a steady improvement in pulse oxygen saturation over time. Nurse Marla thinks that since this has been identified, this medicine will really help. She has seen it help lots of babies and will hopefully help get oxygen to Ella’s lungs better.

Please continue to pray that her cold will subside, the increase in Bumex will be effective, she will continue to tolerate breast milk, and that the Sildenafil (Viagra) will help increase her pulse oxygen saturation over the next few days. Also, that Dr. Kays and staff will continue to grow in knowledge and wisdom on the next best steps for Ella.

Cherries are adorning her outfit and she is still as sweet as ever. She is hugging her floppy valentine puppy and checking out her sparkly heart garland on her crib. Her joy in the midst of it all is such a clear reminder of His love for us and a call to continue to trust Him and seek Him, in all things.

Psalm 143:8
Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I lift up my soul.

Joel Snyder on January 15th, 2008 at 10:48 pm #

Ella, Keep up the small baby steps forward. You look like you are feeling better. I am praying that your new medicine and food will help you keep moving forward. I will check on you later. Love,Grandpa!!!!!!!!!!!!!

Julie Kirk -Saudi Arabia on January 16th, 2008 at 1:42 am #

for some reason i am not getting email posts and can’t see pictures on Ella’s web page, however, I am still praying for the little pumpkin. julie in saudi

Laura Marold on January 16th, 2008 at 4:10 am #

Praying for this regimen to work –especially the breast milk part of the equasion so she can get stronger and grow better. It does sound like everyonge is on the same page. Please let it work!!! Love, Lauraa M.

The Brittain Family on January 16th, 2008 at 5:36 am #

What a sweetheart! Ella brings joy to our family every day. We’re sad that the test result was the opposite of what you were told a week ago however it’s kind of a relief to know how to treat the problem since she’s definitely been struggling with something. Keep up the good work, Mom and Dad!

Matt, Abby, Austin & Caed on January 16th, 2008 at 5:38 am #

Every day is a gift. We’re praying for Ella’s team to come up with the perfect combination of medicine for her to help her through this. We also are lifting you three up to God every day.

Lizotte Family on January 16th, 2008 at 7:49 am #

Where’s a Viagra joke when you need one? I’m excited to here they found something ailing her, I’ve heard of many uses for Viagra. It’s a fascinating drug for sure in more ways than 1. Lots of prayers to keep UP the good work! Sorry I don’t mean to offend anyone.
big HUGS. and send that Bun lots of Kisses for that cheeky thing

Lisa (Ms. Texas) on January 16th, 2008 at 8:05 am #

Viva Viagra!!! Ella looks so beautiful. I am so glad the breast milk is being tolerated so far!

“Whoever finds wisdom finds life and receives favor from the lord. I find wisdom, and I find life and receive favor from the lord.” Proverbs 8:35

In my daily prayers!!!!

Jessica Singletary on January 16th, 2008 at 10:01 am #

We are praying for Ella as she continues on this journey of CDH.

Singletary Family

Marge (Indiana friend of Keith & Liz Mueller - Chris' parents) on January 16th, 2008 at 2:38 pm #

Praise God for the good news on Ella; may He continue to strengthen her, heal her and bless you all with His goodness and mercy. May you always walk in His light on this journey as we continue to lift you up with our privilege of keeping you all in prayer.

Kara on January 16th, 2008 at 3:29 pm #

Is is wrong that I find it humorous that your baby is on on Viagra? Hey, whatever works, right? I’m praying that they figure out the right cocktail of drugs for her and that she gets over her sniffles. We love you guys a lot!!

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