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.

Felix on August 29th, 2007 at 7:01 pm #

Josh & Tina, praise God that Ella is geting stronger. Ella is beautiful! We continue to ask God to send His angels to surround you and the family. Love, the Lin family (Annie & Felix).

Joan and Steve Odell on August 29th, 2007 at 7:06 pm #

Dear Ones – She is so beautiful and so are the two of you. We are glad she could tolerate your milk Tina but sorry that the superior vena cava is having some issues. Will pray that the meds can resolve this with no more invasive procedures and that all the meds and treatments she is taking will sustain her so she continues to grow stronger with each day. We thank God for Angie, her stamina, strength, expertise and dedication to those she serves and sweet Ella. I pray that the two of you are able to find solace, peace and rest through each other and our loving Lord. It is our joy and honor to share this beautiful burden/journey with you. Hugs and love – Steve and Joan

Laura Blackwell on August 29th, 2007 at 8:00 pm #

It’s beautiful melon head with a sweet face! Continually upholding you and your precious girl in prayers.

Kristen on August 29th, 2007 at 8:33 pm #

Ella is the sweetest “melon” there is. Oh, we continue to pray for her and for your family. What a gift she is! Blessings as you sleep tonight.

Char Snyder Jordan on August 29th, 2007 at 9:03 pm #

Hi, I think of you often during the day and know that this is rough but you are holding onto faith and the Lord Jesus Christ. He is the one. I wish we could be with you and help support Ella and you too. We wish you a good nights sleep and wonderful dreams. Sleep, Sleep, a love watch we’ll keep to protect you through the night. Love, Aunt Char and JIm

Joel Snyder on August 29th, 2007 at 9:26 pm #

Ella, Glad to hear that you are progressing along and that maybe your new medicine will help. Taco,Manny, and Grandpa are saying prayers for you. Tina and Josh it is always nice to hear you after a session with Dr. Kays. Keep up the battle and be positive. I Love You!!!!!!! Grandpa

kristin on August 29th, 2007 at 10:02 pm #

Ella, did you know that Melon Head is a common term that parents use for the children? It’s true!!! We called Marques (my son) Big Head and Melon Head to this day and he 18 years old!!

Keep on resting and repairing West Family. Glad Dr. Kays has given an extra dose of calmness to all of you. Happy thoughts and prayers to you all. Continue to count the blessings and they will multiply!
I love you! Kristin

Laura Marold on August 29th, 2007 at 10:33 pm #

Josh, I’m so glad that talking to Dr. Kays has reassured you. He must be a wonderful person to be so dedicated to these very ill babies. To look at her picture with her CUTE little nose, beautiful brow and pretty eyelashes it is hard to believe she is so ill. I’ll keep the three of you in my prayers tonight as well as the devoted staff and the wonderful doctors. What a beautiful little miracle baby she is!

Williamsburg on August 30th, 2007 at 6:57 am #

Every time I log on or even think of you thruout the day I am amazed anew at the absolutely incredible journey you all have been thru from Day One – Miss Ella, your little body has been thru more than most adults will ever see in their lifetimes and you continue to progress and move forward – what a miracle. J&T we wish we could take the burden away completely from you but rejoice at what God is doing in and thru the very real challenges. Thanks again for allowing us to share the journey with you and to stand with you in prayer and love. Major hugs all around. XOXOXO

Christe Mitchell on August 30th, 2007 at 7:13 am #

Josh,Tina,& Ella, just wanted to let you guys know I was thinking of you today and Praying for you guys! Below is a little poem someone sent to me this morning and I thought I would share it with you. Have a blessed day.

Whatever your cross,
whatever your pain,
there will always be sunshine,
after the rain ….
Perhaps you may stumble,
perhaps even fall,
But God’s always ready,
To answer your call …
He knows every heartache,
sees every tear,
A word from His lips,
can calm every fear …
Your sorrows may linger,
throughout the night,
But suddenly vanish,
in dawn’s early light …
The Savior is waiting,
somewhere above,
To give you His grace,
and send you His love ..
Whatever your cross,
whatever your pain,
“God always sends rainbows ….
after the rain … “

George Starks on August 30th, 2007 at 8:04 am #

Josh and Tina,

I am sitting in my hospital bed thinking of you. I have a lot of empathy for your little girl right now with all the tubes, needles and yes, even a brand new scar across my belly! I think I may know what she is feeling to a small degree and I am quite sure that all of your love and support is radiating through her and giving her the stength that she needs to pull through. From the pictures you can see that she is quite a special little girl and you are special parents. Never stop believing. God bless you.

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