Posted (jooosh) in All Posts on April-16-2010

At the moment the kiddo is resting. She’s been doing a lot of this the last day. AS a matter of fact, since last night around 10pm and it is 5:30pm today and she has not stopped sleeping. I think it’s a combo of her body wanting to rest, plus the bevy of meds that are making her sleepy. I’ll tell you though, I’m happy to have her sleeping considering the alternative. Seeing your kiddo go through narcotic withdrawal symptoms is one of the hardest things I’ve ever had to watch.

She shakes and babbles and doesn’t act like herself plus she is so itchy. It’s really heartbreaking and scary at the same time. There’s also no way to know for sure how much longer it will last either. I mean, the symptoms will go away eventually, but it could last even another week! She has some moments of lucidity when the methadone and ativan hit her just right, but it’s not all the time yet. So keep sleeping sweet girl.

On a more positive note, Ella’s bowels are moving along. She had her first poop last night (yay) which is always a big deal after surgery, let alone bowel surgery. They docs are pushing to switch all meds to PO (by mouth/g-tube for Ella), and so far Ella is processing them in her tummy just fine.

We had an unofficial confirmation of this when she had her echo done. The docs had the NO (nitric oxide) stopped and checked her heart to see if the sildenafil was now working instead for her pulmonary hypertension. Peeking over the tech’s shoulder, he confirmed that her echo looked good compared to the previous one. Yay for Ella’s body moving forward! If Ella keeps this track, the next steps will be introducing food back into her system. The rumor is that a very slow drip of food into her g-tube might happen as quickly as tomorrow.

One small bummer is with all the positive steps forward, there’s a good chance they’ll move us out of the PICU. For Ella it’s a good thing, but for her parents it’s going to present some challenges. The regular rooms are shared, which isn’t an issue, unless some kiddo comes in with some major cold putting Ella at risk. They’re not supposed to put kids like this in a room with Ella, but they do. Plus, no couch/bed to sleep on, so we’ll* probably be catching our winks in a chair. Here’s hoping that somehow we can be discharged right from the PICU, but I have a feeling that won’t happen.

Ella’s Grandma West came for a visit yesterday evening. She made Ella this beautiful blanket and matching cover for her frog pillow. Grandma West got to see Ella during one of her more lucid moments, which was enjoyable for both.

Please continue to pray for our sweet girl as she progresses forward. The support that you all have given to us over the last week has meant so much. It really carries us through these times.

P.S. Lola the pooch is still sick. Hoping her antibiotics kick in soon.

*By “we’ll” I mean my saint of a wife who has been staying next to Ella every night so far. Sleeping on a chair stinks so I may be pushing her to sleep in the rig a couple nights so she can catch up.

Laura Blackwell on April 16th, 2010 at 5:49 pm #

She looks like she’s sleeping peacefully in the pictures. I know that’s a weird though. Praying for your rest and NO ROOMMATE in the future.

Alicia Martin on April 16th, 2010 at 6:10 pm #

Sleep peacefully sweet princess! Continued prayers for you three and your furry kiddos too! God has already seen you through so much I have faith He will continue to provide what you need! Many blessings and sweet dreams!

Tara Hayes on April 16th, 2010 at 6:51 pm #

Sweet dreams! You know you are in our prayers tonight! Much love,

Eve Johnson on April 16th, 2010 at 7:32 pm #

Prayers continue for you all, including the furry members of the family. Hopefully now that Ella’s body is processing again it can process that withdraw along with it!

Rainey Family on April 16th, 2010 at 7:36 pm #

Keeping you guys in our prayers. Would you like a meal? I could bring one by for you if you’d like… homemade even… just let me know. Since you’re in OC and all. I’m gald that Ella seems to be making progress. I hope that you will be able to keep a private room though. Call me if you’d like a meal.

Jim and Char Snyder-Jordan on April 16th, 2010 at 8:17 pm #

She is such a trooper. We shall say a prayer for all of you. Lola too.

Williamsburg on April 16th, 2010 at 9:05 pm #

With all of the challenges you’ve faced not being on your CO home court, I am so blessed that you have family close by for support; nothing like a Grandma in a pinch. Continued love and prayers around the clock. XOXOXO

Eli Brown on April 17th, 2010 at 3:56 am #

Ella you are such a fighter!! Hard to see you in a hospital again, get better soon.

Steve and Joan on April 17th, 2010 at 7:07 am #

He knows your needs and concerns and will supply them for the three of you. So happy she is moving forward a step at a time. Prayers and hugs, Steve and Joan

Barbara Mullins on April 17th, 2010 at 7:28 am #

Haven’t had a chance to check in since the Mullins have been going through some medical drama themselves. However, I caught up today and I’m praising God for Ella’s progress. We will continue praying for Ella’s quick recovery and that y’all can get back to the joy of “normalcy” whatever that is! Keep your focus on the Lord – He is obviously carrying you through all this – to God be the glory!

Barbara Mullins

Joel Snyder on April 17th, 2010 at 9:07 pm #

Ella, Sleep,Sleep,Sleep that will be good for you. I am praying for you and Lola to keep up the good work of healing and getting better. I have been working and keeping up with your progress. Love,Grandpa!!!!!!

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