Posted (jooosh) in All Posts on May-1-2010

Last Thursday evening Ella had very watery stools for about three hours after her 8pm feed. We decided to hold off on giving any more food and with that she slept through the entire night. That was the first time she slept solid since we introduced food again. After some brainstorming and looking through previous blog entries, we came to the conclusion that the issue was mostly likely caused by too much food volume too fast. The docs tried to get her to take full feeds (250ccs) within a few days. It was just too quick, so the idea was to start over with smaller amounts and see if we saw the same reaction from Ella’s gut.

Yesterday morning Ella still had her central line in. We had thought that if she could move away from needing any IV access that we could just pull it and be done. But, with all the loose stools, unbalanced electrolytes, and not knowing the exact cause, we opted to get a PICC line placed. The fact that Ella hadn’t had anything to eat since 8pm the prior night meant she could go right to radiology have the line put in. But, the team that placed the PICC line was backlogged, it was on a Friday, and PICC lines aren’t done over the weekend! Well, nice that the Chief Medical Director happened to be in the PICU that morning. He was able to get us slipped in front of the queue!

With the successful placement of the PICC line, they were able to remove her central line later in the afternoon. After this line was pulled, we felt a little more relaxed with letting Ella be a crazy monkey in her bed. She just keeps spinning around, sitting up, tangling all her wires, which requires me to keep reminding myself that it’s a privilege to keep untangling them. =)

We started her food back up as well yesterday at 80ccs. Then bumped to 120ccs, then 160ccs. Unfortunately, she still had a very loose stool that evening and even another time in the middle of the night. This time, we’ve considered discontinuing her dose of Reglan, thinking that it may be contributing to the loose stools. So today is the first day without the Reglan. We had a feed at 8am (120ccs) and 12pm (160ccs) and so far, no diarrhea. If we could manage to discontinue Reglan, that would be great. The strange thing too: when we discontinued Reglan last May, we did have a couple of months where Ella seemed fine without it. But then we were hospitalized for a night due to feeding intolerance and the small bowel series indicated that she was not having gastric emptying, we started using Reglan again. Maybe that is when the bowel obstruction was starting and so she needed Reglan to help push things through? And maybe that is why she has required Miralax the past couple of months since we were hospitalized in Denver for a partial bowel obstruction? It was just the medicine she needed to move her system along. But now that she has had surgery, it would be great if we didn’t need to use either one of these medicines.

Ella’s lab numbers have all stabilized out, and she hasn’t really been that agitated either. The only side effects we are still experiencing relates to the Ativan which is keeping her in a perpetual drunken state. It can be funny to see sometimes but very nerve racking when she’s zooming around the crib and looks to do a face plant into the metal rails…oye. For this reason, we have to be vigilant in being right next to her when she’s active.

At this point, we don’t even have to work up to full feeds (1,375ccs per day). Even if we can get enough food and water into Ella to keep her minimally hydrated and nourished (1,000ccs), and her body can process it properly, we can look to head out of the hospital and work up on the remainder of the feeds on our own. Please pray she tolerates our feeding plan for the next couple days with no diarrhea!

Thank you again and again for all of you who have come by to visit, bring meals and/or have sent your support with cards and gift baskets. It has been one of the greatest gifts to us this time: feeling like there has been so much support in-person during our stay along with our virtual support on the blog.

When coming through all that we have, I find myself being reminded about the privilege that started over three years ago…

Being told by doctors in your home state of Colorado that your kiddo has a 20% chance of survival, BUT finding a surgeon in Florida who has a passion for saving these kids: a privilege.

Temporarily uprooting your life, moving to Florida, expecting to stay three months, staying eleven, multiple surgeries later, many heart wrenching days, lots of love shown by nurses, connecting with other amazing CDH families and friends, our precious daughter saved: a privilege.

Moving back to Colorado, watching your child grow, get strong, go through therapy, finding an amazing pulmonologist and pediatrician, going back into the hospital for reherniation surgery, connecting with more nurses and families: a privilege.

Still more therapy, multiple setbacks relating to food, drama with a nanny, the loss of a son, the doctor and many people who helped us get through it: a privilege.

Ella in the heart cath lab, SVC opened up, connecting with more doctors and nurses, Ella getting stronger, sitting, standing, babbling, crawling for the first time, back to the hospital in Denver for a partial bowel obstruction: a privilege.

Being able to travel with Ella in an RV all the way to California, seeing friends and family on the way, being close to CHOC when your kiddo has a major bowel obstruction, emergency surgery, four days of intubation, massive withdrawl symptoms, staying in the PICU for over three weeks, connecting with a single mom taking care of her precious son in the PICU, untangling all of Ella’s wires over and over again because she’s feeling better and acting more like herself, having a CHOC nurse be bold in asking to pray with us this morning: a privilege.

When we were in Florida, and Dr. Kays was talking about the plan for Ella and the potential future events, he raised the possibility of a reherniation. What was profound is what he called it if he would ever have to operate again: a privilege.

You see, having a kiddo that has been through all Ella has, all the complications, all the challenges, all the exhaustion, all the anxiety, all the tender sweet moments, experiencing Ella’s strength, her personality, her cuteness…all of this: a privilege.

Being able to share her story and have so many lives impacted for the Kingdom: a privilege.

Heavenly Father: Thank you for the privilege of being Ella’s parents. While it has to be the most challeinging and difficult thing we’ve ever experienced in our lives, the reward and privilege of having her with us is greater than words can truly express. Praise you Jesus for bringing her through the last few weeks, and all the many weeks before. Thank you Lord for letting us have her in this lifetime. Thank you for her amazing life. Thank you for her testimony of your Grace, Love, Mercy and Strength! May she continue to be a blessing to you as she has been to so many others. Amen

The Brittain Family on May 1st, 2010 at 2:33 pm #

We feel privileged to share this journey with you. Thank you for the reminders of all God’s many, many blessings!

Tara Hayes on May 1st, 2010 at 3:37 pm #

you are all so very precious to me! It is my privilege to pray for you and walk with you on this journey. I hope we get the chance to meet someday this side of heaven. much love.

Eve Johnson on May 1st, 2010 at 4:54 pm #

Amen and a thousand times, Amen.

The Williams on May 2nd, 2010 at 9:55 am #

Amen, Amen…

Alicia Martin on May 2nd, 2010 at 10:15 am #

Knowing your family and being able to “share” your journey- a privilege. You all are such a blessing.

Williamsburg on May 2nd, 2010 at 10:15 am #

It is, truly, the only way to understand St James’ exhortation to ‘consider it pure joy’ when we encounter circumstances that seem so incredibly difficult – each and every one is a privilege, meaning that we are worth His love and care to grow us up into the likeness of His Son. It is a blessing to be on this journey with you. All our love, always. XOXOXO

Steve and Joan Odell on May 2nd, 2010 at 1:58 pm #

Thank you Lord for all the ‘privileges’ you give us. Hugs and prayers continue. Steve and Joan

Kelli Billman on May 3rd, 2010 at 9:15 am #

Well said West family, well said.

Julie's friend Lynn on May 3rd, 2010 at 9:52 am #

I don’t know you, but I love you!

Rainey Family on May 3rd, 2010 at 11:25 am #

Wow, the strength you two have always amazes me. I have tears in my eyes right now. You have been through so much, but what a blessing little Miss Ella is. Please give her a hug for me!

Dotty on May 3rd, 2010 at 3:05 pm #

your blog has moved me to tears many times and this time is no different, Ella is amazing thank you for all your sharing. our prayers are always with you. its our privlege!

Joel Snyder on May 27th, 2010 at 11:31 pm #

Ella, Your are such a lucky girl that you have a Mommy and Daddy that are so committed to your care. I am also one of the people so inspired by the way they have fought for your life. It is my privilege just to be part of the family that cares so much for you. Love,Grandpa!!!!!!!!!!!!!!

Baby Cloth on August 31st, 2010 at 2:52 am #

i’m highly impressed…your blog always moved me to tears so many time…my prayers are always with you…

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