Posted (Tina) in All Posts on October-1-2008

Ella did better last night.

She was still up a lot of the night, but it seemed like it was due to retching on her own secretions. Thankfully, it was not due to food. She had a continuous feed of Alimentum 20 calorie from 11pm – 2am. They stopped the food at 2am because they scheduled to have her thyroid and adrenal glands tested for hormone levels. One of the pulmonologists on the team thought that if her hormone levels were out of whack in any way, maybe it could be a contributing factor to her higher heart rate.

Speaking of heart rate, the increase in sildenafil has seemed to cushion her high heart rate. It is still higher than her baseline heart rate but not quite as high as a few days ago. Also, her own secretions have been worse the past few days. We are not sure if she is more wet or another possibility: sildenafil can cause phlegm production and that medicine has been increased for a few days too.

The Care Conference went well this afternoon. After discussing everything, this is our new plan of action. We are interested in the procedure that Dr. Fagan discussed last week about opening up her SVC. However, we decided that we want to hold off for right now. We want to try and maximize the use of her medicines; we are trying to achieve just the right balance. And everyone agrees that we have made progress and we are close. If we go through another major procedure, it is going to put us back significantly. On the other hand, if we try to get the perfect balance with meds and are unable to get the results we need, then we might have to proceed with the procedure.

We also decided to leave her sildenafil at the current dose, although we can increase it if we think it will be beneficial. Instead, we decided to increase the captopril to 1.25mg per kilo, three times per day. If you remember, we are convinced that the captopril was a huge factor in her increased heart rate. Since we experienced slightly lower heart rates over the past few days, we are going to increase the captopril. The captopril works in symphony with the sildenafil for effectiveness but also works together with diuretics to increase the effects. We will just need to watch her heart rate and blood pressures to make sure it is a therapeutic dose and works well with the other combination of meds.

And even though captopril has caused a high heart rate, we know it has benefited Ella a lot. Her BUN was 9 this morning. In the past, she would have been experiencing major pulmonary edema and respiratory distress. And for most of the day, she behaved more like herself. She was smiley a lot of the time.

Another factor is assessing her fluid status: they took another chest xray late this afternoon. Surprisingly, it looked the same or maybe even slightly better. Yet she has not had any Bumex or other loop diuretics (e.g. Lasix) since last Sunday. Instead, we increased the Aldaztazide to 1mg/kilo, three times per day. It is a blessing that we have not touched the Bumex for 3 days. We are trying our best to not use it. We realize that we still might have to, but if it is going to be part of Ella’s regimen, maybe it will be the type of med that is only used when we sense that she is fluid overloaded.

Ella has been having lots of food issues. She is not even able to tolerate Alimentum 26 calorie like she was before the nissen surgery 4 weeks ago. At the Care Conference, we decided to try a new formula (sounds like “Aloe-sure”). She is on a continuous feed right now and has been tolerating it.

Everyone at the Care Conference agreed that we simply want to get her meds and clinical signs down to a science whereby we can discuss via phone and titrate the meds, if needed. Yippee – they want to help us get home!

By the end of the day, we did find out that Ella might be having a problem creating enough cortisol (adrenal gland). The normal cortisol range is 5-25 ug/dl. She is at 0.62. The most likely cause: she took prednisolone which is a steroid; steroids can suppress the body’s natural ability to manufacture cortisol even for a time after taking them. The treatment requires an IV line plus a separate poke all within a few minutes. We did not take any action tonight. Yuck, not looking forward to that part.

We will see what the next few days brings as we tweak meds more. I’m hoping that we get closer to the optimum regimen for the Bun.

Also, I’m literally falling asleep as I type this, so I am going to crawl into bed and hope that Ella sleeps tonight!

Chambers Family on October 1st, 2008 at 10:53 pm #

Oh my gosh the piggy tails are so cute! Glad you all had great communication today. Here’s to HOME!

Kelly the Nanny on October 1st, 2008 at 11:00 pm #

She was so adorable today, and she seemed to feel much better than you said she felt yesterday. Praise God!

2 Peter 1: 5-8
“For this very reason, make every effort to add to your faith goodness; and to goodness, knowledge; and to knowledge, self-control; and to self-control, godliness; and to godliness, brotherly kindness; and to brotherly kindness, love. For if you possess these qualities in increasing measure, they will keep you from being ineffective and unproductive in your knowledge of the Lord Jesus Christ.”

Uncertain or otherwise extraordinary times (circumstances) require extraordinary wisdom, vision, boldness, flexibility, dedication, willingness to adapt and a renewed commitment to Biblical principles that never change. The secret, of course, is adapting to our situations without altering God’s truth. I’m so glad to see you two, every day, with a vision of the future, rather than just for the now. Instead of the temporary fix (the diuretics, surgery, etc) you’re thinking long term, even if you/we have to sacrifice our time (and comfortable beds in exchange for air mattresses and hospital food) to do the right thing, and focus on that end result.

In total Awe! Can’t wait to see you tomorrow Ella! Sleep tight everyone 🙂

Joel Snyder on October 2nd, 2008 at 1:36 am #

Ella, I am so pleased that your care conference went well. I am praying that you keep up the steady progress and will be going home soon. I will check on you tomorrow. Love,Grandpa!!!!!!!!!!!!!!!!

Debbie Bennett on October 2nd, 2008 at 5:24 am #

When I am on the computer I like to turn on my tunes. My favorite group is Third Day and as I was reading and looking at the pics, Cry Out to Jesus started playing. It feels as if the Lord is talking to me. I continually pray for little Ella, but today seems a little different for some reason that I can’t explain.
So, I “Cry Out to Jesus” for complete healing of Ella. Her parents have been more faithful that anyone I’ve ever known and I claim their victory on this journey and pray for a balance to come. The West’s have been through a lot and will continue to be steadfast with your plan. Please guide the docs to find a cocktail that will get Ella on the path to full recovery. Amen.
Tina and Josh: We love y’all so much. This CDH journey that we are on is the biggest, craziest rollercoaster ever. We never know what’s around the bend. Several of my friends keep reminding me that God only gives these precious children to parents that He knows can handle it. Our CDH journey began 3 years before your’s and yet I have learned so much from you. I get a little overwhelmed at times, but find so much inspiration in the two of you. Thanks so much!

Mark Williams on October 2nd, 2008 at 5:45 am #

Dr. Tina,
One of the first things I do in the morning is check on Dr. Tina blog and start the day in prayer for the West”s. I will be free tonite to move the two dressers, two small dressers and the small desk. I will need instructions to get into the house.
Mark W.

Steve and Joan Odell on October 2nd, 2008 at 6:21 am #

So glad things went well with the conference and Ella is feeling better. Prayers continue and hugs – Steve and Joan

John & Estela Williams on October 2nd, 2008 at 6:30 am #

Cute hair Ella. You look so precious and happy, pray that they figure your med’s and food intake quickly so that you and your parents can go home. Love ya

megan on October 2nd, 2008 at 8:04 am #

Goodmorning pumpkin. I saw your Daddy after the care conference and his spirit seemed high! I know there is not much any of us can do right now but I have fiqured out a way I can help. I am sharing your story to anyone I can. I have found that by doing this the spirits of families in other medical situations are lifted. And I have found that your family’s faith in God is really touching some unexpected hearts. So I am bringing in as many prayers as possible. Love the pictures that mommy and daddy put up!

Jennifer Harris on October 2nd, 2008 at 8:50 am #

She looks so precious and the pig-tails are darling. We are praising the Lord for a ‘breakthrough’!!!
jennifer & chelsea

sherry martinez on October 2nd, 2008 at 1:53 pm #

I pray for you all to go home soon you have been in the hospital way to long. i know how hard it can be and as always if you need a friend you can call or drop me an email. hugs to you all sherry

kristin on October 2nd, 2008 at 7:27 pm #

Ella—I love those piggy tales! Soon you will graduate to a “pony”. I’m so glad that the conference went well today and taht there are good things on the horizon. I pray for you and your parents and the docs every day. I pray for your deep rest and restoration of your precious body. I love you all.


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