Posted (jooosh) in All Posts on April-17-2010

Last night was hard. The medicines to help treat the narcotic withdrawal symptoms plus the itchy symptoms were being administered once every 3 hours. It seems like Ella has already built up a tolerance because at 4am, she could not stop itching and wiggling around the bed. Unfortunately, they could not give her anything to help with the relief. She was wiggling and upset till 6am, when they gave her more meds.

This behavior was shared with the doctors. With this in mind they decided to give a half dose of morphine in between the other meds to possibly help with the withdrawal symptoms. The nurse gave the first dose this morning, and unfortunately, it did nothing for her. One of the docs came by and saw Ella having another episode in the afternoon. They decided to up the dose of morphine hoping it would help. We haven’t use it yet, but there’s a good chance we will have to later.

Tina and I are upset that they have to pump Ella so full of these other meds just to help her recover from the withdrawal symptoms. Even once the symptoms calm down, we’ll have to wean her off these other meds. Granted, we won’t need to be in the hospital to do this, but it could still take up to 6 weeks to titrate the methdone and ativan! Uhhhh…such a bummer.

Ella had a echo done yesterday, but we didn’t hear the definitive results until today. It looked the same as when she was on the NO (nitric oxide) showing mild pulmonary hypertension. This means that the current dose of sildenafil isn’t working like it normally does for her. Our guess is that it’s being absorbed in the stomach but not in the small intestine, minimizing the impact. The docs ordered an increased dose for now until her small intestines are back in line. Hopefully this is all it takes to get her pulmonary hypertension back under control.

Tina also reminded the docs during rounds that Ella was on a regular dose of Miralax at home. They admitted forgetting this fact and wrote an order for her to be put back on it. As of this time, there’s no set date on when we get to start feeding her. The surgery team came by and confirmed that we should still hold off on the food for now. The head surgeon listened to her bowels and, just by the sound, was able to tell that she’s still too distended and not ready. He also affirmed that all the other meds we’re giving to minimize Ella’s withdrawal symptoms will slow down her motility as well. So for now the kiddo is on a steady diet of TPN and lipids via her IV.

With all the complications still in the way, it doens’t look like we’ll be moving out of the PICU for a bit. I guess we’ll consider that a silver lining.

Thanks to all of you who have brought us dinner, sent cards, delivered gift baskets, and visited. The greatest blessing of being in California during this time is the fact that family and friends can support us with their physical presence. Your amazing love, support, and prayers keeps us sane. We also appreciate all the virtual love and support from our friends and family across the country. Thanks for being here with us!

Please continue to pray for our sweet girl…that her withdrawal symptoms will subside, her body will heal, and the Lords work will be done through the circumstances he’s having us go through.

Thank you Lord for bringing us here and for carrying us through this incredibly challenging time. We know you’re in control, and we trust in you, but it is hard to see your child go through this. We know you, Father, can relate. Jesus, we ask that you comfort our child and reduce her withdrawal symtoms. Heal her body, and make her whole again. We praise you Lord for the precious child you’ve blessed us with. Thank you for her. We love her so much. Amen

Steve and Joan Odell on April 17th, 2010 at 7:46 pm #

Dear little heart….we are praying for your comfort and healing to regain the balance your little body needs in the coming hours and days. We pray the docs will feel the Lord’s guidance and for your momma and daddy as they walk this journey with you. Thank you Father for this special child and what you have taught us through her. Give the West family, rest, peace and healing. Amen. Hugs, Steve and Joan

Kristen on April 17th, 2010 at 8:14 pm #

Ella, we serve the God of miracles. . . He can work this out. . . praying for you sweet girl!

Julie on April 17th, 2010 at 8:46 pm #

I am wondering…since they were surprised that she is going through such withdrawal and since it seems her reaction is fairly severe, are they sure this is withdrawal and not something new and different?

Praying for you guys!

Krista Chiefa on April 17th, 2010 at 9:41 pm #

Praying for the Bun constantly to heal herself with her warrior spirit. Colorado is not the same without you all. Praying for Miss Lola, too. Love to all of you.

Tara Hayes on April 18th, 2010 at 12:20 am #

Ella, you are in our prayers! So sorry you are struggling…
And I am wondering too, are they certain it is narcotic withdrawals and not a new allergic reaction to some med they are giving her repeatedly?

Alicia Martin on April 18th, 2010 at 7:19 am #

Praying that this gets easier…..

Fran on April 18th, 2010 at 12:07 pm #

I am not a doctor so have no suggestions. My prayers are to the Lord for Ella, you both, the doctors, and the nurses.

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

Josh and Tina I am so happy to hear all the love and support going out to you!

Joel snyder on April 18th, 2010 at 11:57 pm #

Ella, I am sorry to hear that this drug business is not going very well. I am saying my prayers for you Mom and Dad and hoping that it will get better soon. Love,Grandpa!!!!!!

Post a comment

Name:  (required)
Email:  (required)