Apr
18
    
Posted (Josh) in All Posts on April-18-2010


We’ll give a quick update, but with all the not so fun times we’re experiencing now, we figured a photo break escape for you Ella fans would be good. But first…

Ella’s hanging in there, but the parents are exhausted. Her withdrawal symptoms have lessened a little bit, but she still very spacey and itchy. She slept through the night and had a good morning. She was awake for about 2 hours last night and then has been for most of today although she is still sedated. We have tried not to give any additional doses of morphine and have been able to avoid it thus far. One surprise today: she actually tried to sit up in the bed even though she didn’t have the balance or strength to sit on her own! That is her fighting spirit trying to work through the withdrawal meds!

Surgery came by to take a look at her: they still wanted to hold off on food. Once we heard the news, the PICU team thought it might be good to try her withdrawal meds via her g-tube versus IV. A small change, but one in the right direction (since we will have to wean the withdrawal meds at home too). However, they gave methadone via g-tube and within 10 minutes, she was writhing in pain. Apparently, her tummy really hurt. We vented her belly as much as possible and after 15 minutes, she was content again. So, they had to order the withdrawal medicines via IV again.

Ella’s hand looked puffy at the IV site and although it was still flushing, it had been active for 10 days. So, we were able to take it off today to give her hand a break. We checked the central line to make sure that we could still draw labs and it appeared that there were clots in the line. They ordered a TPA (tissue plasminogen activator) to clean up the catheter and eliminate clots. Fortunately, it worked and they are now able to draw off of two more lumens. Thank goodness!

We had asked the docs as well if they were sure that she’s experiencing withdrawal symptoms and not something else. With all the symptoms Ella is presenting though, we’re confident that we’re treating withdrawal. They have a Finnigan scale where they score her each day to see where she ranks on the scale. Ella is presenting most of the signs of true narcotic withdrawal. It’s so difficult seeing your kiddo deal with this when just a few weeks ago we were all enjoying our time together.

One more concern: this afternoon, she seems like her respiratory rate is higher, heart rate a bit higher and saturations not as good. Knowing Ella, it might be fluid related. She has been positive for urine output the past few days. Maybe the net effect is accumulating and we’re seeing signs of fluid retention. On a similar note, they increased her dosage of sildenafil because the echo showed that it was not all being absorbed through her g-tube. Maybe her diuretic is doing the same thing? If she continues this way overnight, we’ll likely be requesting a chest xray in the morning, just to eliminate that possibility.

Please continue to pray for the Bun’s healing and forward progress.

Below are some pictures of our trip since we hit California back in March. Enjoy…

Lovin’ on Grandma West

Ella’s dad and his asistant

Contortionist Pooch

Ahhhh…the Pacific Coast

Waiting in line

Nothing like a beautiful sunset to inspire black water dumping

The Rig

Rockstars!

Unnecessary extreme closeup self portrait

“Yay! Dad’s dumping the black water”

Don’t ask, Don’t tell

Even the pooch enjoys a good sunset

I’m givin’ it all I can captain…I think she’s gonna blow!!!

Ummm…semi-fresh water spray?

I have me some mad dumping hose cleaning skillz (ummm…are you wearing flip flops???)

How cute can you get?

Even cuter!

EVEN CUTER!

Standin’ up baby

Yeah…pretty stinkin’ cute!

Out in the stroller

A pooch and her Kong

Ella, “Can I have the Kong?”

Lola, “Yeah…no…I don’t think so!”

Pooch refill

Restin’ on poppa

Diva dog pose

PCH in Laguna Beach

The beach in Laguna

Face to face with cousins for the first time!

Richard and Megan

Richard and Megan again

The whole crew

What’s goin’ on outside?

Excuse me sir, do you have tickets to the gun show?

Megan and Aunt Tina

A sleeping Lo

Cousins Claire and Ryan!

Sleepin’ Bun

Great Grandma and the pooch

Ella’s Great Grandparents

Silly Bun

Nap time

The Rig in front of the Great Grandparent’s house

O2 Pickup at Apria

Pooch walkin’ at Doheney State Beach

The parking spot

Lola enjoying the view…and…well…enjoying being a dog

Silly Dad

Cute Patoot

The smiles melt your heart

The melting continues

More cuteness

Just darling

Woah!!!

What’s this!!!!

Look Ma…no cannulas!!

West Family Self Portrait



Heidi Ham on April 18th, 2010 at 7:16 pm #

Such sweet pictures…thanks for sharing =)

Ellie Brown on April 18th, 2010 at 7:22 pm #

Such great family pictures. You can see everyone was having a great time.

Elizabeth Norman on April 18th, 2010 at 7:36 pm #

Loved your photos. Ella looked so adorable and happy. It’s so sad to see what’s happened to her since. We here in Temecula will just keep praying for her to feel better so you can get on the road back home. And also that you two can catch up on sleep. Hope Josh washed his feet before getting back into the RV. So sorry that we didn’t get to meet you.

Julie on April 18th, 2010 at 7:37 pm #

Wow! Looking at these pictures shows how far she’s come this year! Able to meet her cousins in person…without total freak-outs! Letting Grandma hold her. Sitting and pulling up. Let’s hope she gets to do all this again soon. Prayers for you guys!

Alicia Martin on April 18th, 2010 at 7:39 pm #

Love, love, love the pics! What a little blessing sweet Ella is (you to Lola!). We can’t wait for your safe and healthy arrival back in Colorado!

Fran on April 18th, 2010 at 7:44 pm #

Always smile looking at your pictures. Love each one of you.

Rainey Family on April 18th, 2010 at 8:08 pm #

Such adorable pictures! Thanks for sharing them! We are praying!!!

Lisa Richmond on April 18th, 2010 at 9:24 pm #

wow….what a journey you’ve had this spring…I just caught up…OhMyGoodness. Josh & Tina…my heart pours out to you…what an incredible journey you have been on. Ella…what a princess…She is one tough cookie. I will continue to pray for wisdom for your doctors treating her this time and for you two to find the strength each day to make the right decisions for her w/ regards to her care.

Jan Costas on April 18th, 2010 at 10:14 pm #

Wonderful pictures! I pray you’re back to times like that again soon.

Joel snyder on April 19th, 2010 at 12:08 am #

Ella, What a terrific bunch of pictures and what a great time all the family had getting to meet you. I really needed this upbeat posting and hope that you are feeling a little better each day. I also hope that Lola is starting to do better with the medicine she is getting. Catch you later. Love,Grandpa!!!!!!!

The Williams on April 19th, 2010 at 7:07 am #

Love the photos…. miss you guys!

Jim and Char Snyder-Jordan on April 19th, 2010 at 7:33 am #

That was lovely. You sure do adjust,adapt and overcome for Ella. She is such a beautiful child. Our love and prayers to you.

Marge (A Friend in Indiana) on April 19th, 2010 at 9:35 am #

Great photos………Love you sweet Ella……sending prayers that you will be out enjoying the sunshine again really soon. God Bless all of you.

monika clark on April 19th, 2010 at 8:44 pm #

come back to doheny-i am home-let’s have a picnic with our victorious ella baby, and photos to share of our madison baby. GOD BLESS AND KEEP YOU. hope to see you soon. xomonika

Kara Snyder on April 20th, 2010 at 10:32 am #

We have an amazing children’s hospital here in Austin if you ever want to visit our neck of the woods. Ella has some more cousins that would like to meet her. Especially her little birthday buddy.

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