Dec
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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

[chorus]
———————————–
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

[chorus]
———————————–
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
———————————–