Posted (Tina) in All Posts on December-11-2008

Ella went to get labs today and see her pulmonologist.

Her labs all turned out fine – her BUN was 19. This is an “ok” range, but a bit on the wet side for Ella, just from a numbers stand point. Clinically, she has still been behaving great, so numbers do not mean everything. However, just 2.5 weeks ago, her BUN was 31. So, she has trended in the wrong direction for the past 2.5 weeks. This likely means that if she stays on the same course, she will get too wet again. In talking with the pulmonologist, it also means that she may need doses of Bumex every so often to keep her stable.

Ella has not gained weight over the past 2 months, so she needs to have an increase in calories. We are almost positive that she will go towards getting too wet and requiring Bumex because she also is going to get an increase in food volume. We want to try and keep her at 100ccs per kilo per day. That means that we need to increase her from 768ccs to 812ccs in a 24 hour period (34ccs/hour x 24 hours). An incremental increase of 48 ccs each day should not be that much, but for Ella even the smallest changes can wreak havoc.

We are still working diligently to work towards full bolus feeds. So far, she has been taking bolus feeds once every 2 hours or so during the day and using a continuous feed via the food pump at night while she is sleeping. Our goal is 5 bolus feeds during the day, once every 3 hours and then the food pump at night. We are pretty close.

Once we can arrive there along with our new volume of food (hopefully over the next 3-5 days), we were told to mix her formula to a stronger density of 26k/cal. She is currently at 24k/cal. We are not sure if she will tolerate it, but we need to try because she is not getting enough calories each day to gain weight.

The pulmonologist asked me if Ella coughs. I noted that she does cough throughout the day. It sounds like a dry cough, versus a wet or junky cough. Based on that info, he decided to add Flovent which is an inhaled steroid with minimal side effects. He thinks that this might help with her cough. He had us use this for about a week before we were admitted to the hospital in late August. Then, because of her hospitalization, the script for it went away. Well, he introduced it back into her regiment today.

Also, her sildenafil (Viagra) script was increased from 3.0ml (7.5mg), 3 times per day to 3.2ml (8mg), 3 times per day. So, just a slight increase but one that is effective for her weight today.

We go back to the pulmonology clinic in about 6 weeks on January 22, 2009. I’m hoping that we can meet our goals for food with the increase of volume and density, so Ella can gain weight.

Breath of Heaven (Mary’s Song) by Amy Grant was playing on the radio this morning. For some reason, the lyrics really hit me. I can not imagine being Mary and being chosen to carry the Savior.

I have traveled
Many moonless night
Cold and Weary
With a babe inside
And I wonder
What I’ve done
Holy Father
You have come
Chosen me now
To carry your son

I am waiting
in a silent prayer
I am frightened
by the load I bear
In a world as cold as stone
Must I walk this path alone
Be with me now
Be with me now

Breath of Heaven
Hold me together
Be forever near me
Breath of Heaven

Breath of Heaven
Lighten my darkness
Pour over me, your holiness
For your holy Breath of Heaven

Do you wonder
As you watch my face
If a wiser one, should of had my place
But I offer-all I am
For the mercy-of your plan
Help me be strong
Help me be
Help me

Breath of Heaven
Hold me together
Be forever near me
Breath of Heaven

Breath of Heaven
Lighten my darkness
Pour over me, your holiness
For your holy Breath of Heaven

Becca Richards (remember me?) on December 12th, 2008 at 6:51 am #

AAAAWWWWWWW!!!!! She is sooooo cute!!!! We are praying for her in student ministry!

Loren L on December 12th, 2008 at 7:25 am #

Never a dull moment with Ella. It’s nice to see that you are doing well

megan on December 12th, 2008 at 8:29 am #

Hey Doodlebug it was so good to see you and mommy yesterday. I was upset that I was sick so I couldn’t give hugs.. I hope that everyone has a fantastic weekend.. Hugs~

Williamsburg on December 12th, 2008 at 8:36 am #

I am struck once again at the perfect pairing of Ella Bun with the absolute right parents. No one but yourselves can really know the depths this journey has taken you to, but the ways in which you have met, risen to and grown beyond the incredible challenges just make me want to glorify God all over again for his choice of Ella’s Mom and Dad. Thanks again for being willing to share the story with us; I know I speak for many many others whose daily connection with Ella is an integral part of their day. Hugs and smooches to all. XOXOXO

Debbie Bennett on December 12th, 2008 at 8:58 am #

I just want to reach through the screen and pinch her little cheeks. Love to all.

Fran Jarrett on December 12th, 2008 at 9:01 am #

Prayers and thoughts are with you always. You are incredible! Hugs and love sent your way.

lisaR on December 12th, 2008 at 10:47 am #

I am just amazed at the caloric intake… it baffles me how she is able to survive off such a low intake…It is a testimony at truly how incredibly marvelous, fragile, yet resiliant the human body is…Again…a testimony to designed and created by God….For only He could make this all work.

If she only knew that someday…brownies, ice cream, hot dogs, pizza…they’re all in her future!
But until then…once precious calorie at a time!


Jennifer Harris on December 12th, 2008 at 10:48 am #

Ella is in our prayers and we will continue to trust in Him for complete healing!

Joel Snyder on December 12th, 2008 at 1:22 pm #

Ella, I am thrilled that you had a good visit with the doctor. Grandpa is saying his prayers that you will continue your journey with the same slow and steady pace. Tina and Josh and Kelly bless you for your patience and steadfast determination to keep Ella on the track to recovery. I am thinking of a year ago and all the progress that has been made and thankful for the results. I guess when they say patience is a virtue they are correct. I will catch you later Ella…..Love,Grandpa!!!!!!!!!!!!!

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