Posted (jooosh) in All Posts on August-29-2007

Once again, I’m feeling better about Ella’s condition now that I’ve talked to Dr. Kays.

The good news: Ella did not have any trouble digesting the small amount of Tina’s milk, however it did increase her fluid output (the opposite effect of what we want). So for now, the feedings have been eliminated.

Also, he is not overly concerned with the swelling in her head. He feels it does not pose any risk of brain damage or other major issues in the short term, but it does need to be treated.

The bummer news is that it does look like her superior vena cava has collapsed again (SVC syndrome). We had anticipated that this might occur; this means that we might need the procedure done again.

At this time though, Dr. Kays wants to hold off on another invasive procedure, and instead will try using a drug regiment made up of octreotide. This will focus on the overall fluid retention in her body (the medical term for this condition is called chylothorax). Studies indicate that this drug works 50% of the time, and usually starts having an effect after 3 days of use.

Please pray that this drug will work for Ella. There may be other treatments, but this one has very few side affects and is the least invasive.

Other than the SVC syndrome and chylothorax, Ella is doing well considering the severity of her sickness. Dr. Kays is positive about how her lungs are progressing, despite the large amount of fluid in her chest.

Praise God that her lungs are working as they should, and are getting a little better every day.

Thank you all for the continued thoughts and prayers. This burden is lighter when it is carried by so many.

Posted (jooosh) in All Posts on August-29-2007

Other than the swelling in her head, Ella had a pretty good night. Her O2 saturations have been looking good, usually pegging the 100% mark, and her pO2 numbers have been in the 90’s and 100’s, good for where she is right now (pO2 = total amount of O2 in her blood stream). Her cO2 has been elevated though, probably due to the secretions in her lungs, so they’re tweaking the ventilator to get that to come down.

Tina and I are feeling better this morning, once we heard that nurse Angie is taking care of our baby girl today. Angie said she would try and extend her hours a little more today if she could get her sister to watch her kids. Heck, I’d watch her kids every day if she would watch our baby girl! Angie confirmed that I didn’t know what I’d be getting into, but I just figured I be so worn out after taking care of 2 boys and a girl, that I’d just sleep better at night. =)

Angie confirmed that Ella has been more engaging this morning compared to what we saw last night. She’s watching Angie as she works, and Ramona the monkey hanging from her “vine” has caught her attention too.

We’re also waiting to talk to Dr. Kays about his thoughts on Ella’s swelling. Her head is just so much bigger then before. I just hope that it’s only getting a little worse before it gets a lot better.

I woke up at 5:15am, thinking of my baby girl. I was feeling anxious about the swelling in her head, and couldn’t go back to sleep, so I spent some time praying and reading the Word. I flipped open my Bible right to Psalm 3, and verse 5 spoke to me in that moment: “I lay down and slept, yet I woke up in safety, for the LORD was watching over me.” The life application notes expanded on this:

Sleep does not come easily during a crisis. … David cried out to the Lord, and the Lord heard him. The assurance of answered prayer brings peace. It is easier to sleep well when we have full assurance that God is in control of circumstances. If you are lying awake at night worrying about what you can’t change, pour out your heart to God, and thank him that he is in control. Then sleep will come.

Wow…how much does God rock! I then came across Psalm 5:1-3 (NLT):

1 O Lord, hear me as I pray;
pay attention to my groaning.
2 Listen to my cry for help, my King and my God,
for I pray to no one but you.
3 Listen to my voice in the morning, Lord.
Each morning I bring my requests to you and wait expectantly.

This is the reason why it’s called the “Living” Word of God. It amazes me how God speaks to us so clearly though His Word. I found myself reading a few more passages and then proceeded to fall back asleep. =)

Psalm 13 is my prayer for today:

1 O Lord, how long will you forget me? Forever?
How long will you look the other way?
2 How long must I struggle with anguish in my soul,
with sorrow in my heart every day?
How long will my enemy have the upper hand?
3 Turn and answer me, O Lord my God!
Restore the sparkle to my eyes, or I will die.
4 Don’t let my enemies gloat, saying, “We have defeated him!”
Don’t let them rejoice at my downfall.

5 But I trust in your unfailing love.
I will rejoice because you have rescued me.
6 I will sing to the Lord
because he is good to me.

Praise you Lord! Amen.