Posted (Tina) in All Posts on May-16-2010

WARNING: Graphic Image in this post

It has been a few days since updating and quite honestly, I’ve just been real tired. It has been a round-the-clock job. Josh has been gone each day taking care of Lola while getting repairs done to the motorhome in anticipation of our trip home. On one positive note, Lola seems to be doing better as of yesterday.

Remember Ella’s prescription that we were trying to get filled? After going back and forth with insurance, it all boiled down to one thing: California. The employer that provides the insurance and puts the provision in place for Ella to have this medicine covered (since normally Viagra is not considered medically necessary) told me that if we were at home getting this filled, we would not be having a problem. It costs $2,500 for a 30 day supply here whereas it costs much less in Denver. So, I called our pulmonologist to have him call in a prescription to our local pharmacy. When we called to talk with them, they know us real well and were amazing at taking care of us. The cost from them: $658 for a 30 day supply plus the cost to send it via FedEx. Everything in CA is more expensive, but I had no idea that the location of where we were trying to get a med filled could make such a difference.

Part of this realization hit me hard: it’s been so nice to be surrounded by family and friends the last several weeks. We miss that part of CA. However between our experience at CHOC and the cost of even just one medicine for Ella made us realize that there is a very good reason we do not live here full time. This is a tough reality because although we like Denver, it has been very lonely for us. We just don’t have the support system in place. Through this whole experience though, God’s still small voice tells us that He has a plan and that He has provided top-notch care for Ella in Denver and that we need to stay there. That is a blessing, but sometimes is hard to accept when your heart and mind feel like it is not what you want. I guess we rest in knowing that we are where He wants us and that is always the best place to be.

Back to Ella updates, we took her to get her labs done in Laguna Niguel on Thursday around 12 noon. The results came back on Friday – not the best. Her potassium had gone from 3.9 to 3.0, her chloride was 89. This was even with a daily potassium chloride supplement of 15mg once per day. It was still doable to make some changes and plan to go back for another stick on Monday. We spoke with her pulmonologist on Friday who recommended giving 2 doses of potassium chloride (15 mg each) each day and seeing what results we get from there.

We decided that Ella’s stools still seemed a bit looser than we would like, so we opted to start giving 1/4 capful of Miralax around 1pm on Thursday. After she was fed with the Miralax, Ella started having diarrhea again. The type where you are changing multiple diapers even within an hour. That was a clear sign to discontinue Miralax. By the time we spoke to the pulmonologist on Friday, we had about 12 hours of it and hoped it would go away with discontinuing the Miralax. This was part of the discussion for doubling her potassium supplement: we do not want her to get too dry and her electrolytes to get to out of whack from the diuretic plus the diarrhea. At this point, we were hopeful it would go away.

Well, it’s been three days and nights of listening, waking up and changing diapers. Each time, trying not to get the watery stools on the clothes and bed. We’ve been successful at that part only a small portion of the time, so lots of baths for Ella too. Thankfully, we’re at my aunt’s house so using the washer/dryer has been a blessing. We’ve lathered on Desitin, but even with that, she started to show signs of a rash yesterday morning and now it has only gotten worse. We’ve had so many diaper changes that her skin has broken down and her butt is so red. I feel so bad because now every time she goes to the bathroom, she starts crying and crying because it is burning.

Clinically, she does not have a fever and seemed to be acting fine so we figured that we would just watch to see what happens. Well we got a shocker last night and now this morning at 5:45am. There is trace amounts of blood in her stool. It is more foul smelling and almost seems like a mucus too.

Josh was still sleeping and was so tired that I went ahead and started coffee, knowing that the day was going to be long. I did some research online and found that CHOC has an after hours line for gastroenterology. Since this is GI related and we are not at home, I had them page the on-call doctor. And I already knew the doctor would give this direction, but I wanted to see if there was something else to try: she told us to take her back to the main campus at CHOC since all of Ella’s records are there and go through the ER (the acronym). Sigh…

So, I’m taking a few moments to update all of you before this Sunday begins. It sounded nice to leave and make our way back to Denver this week, but as always, Ella tells us when she is ready. Please pray for us as a family: this has been such a difficult time. Going back to CHOC is the last place we want to take Ella, not just because it is the hospital, but because she is still battling the illness she received from being there last time and we are not ecstatic about the care at that hospital.

But He has a plan for everything. There is no detail that goes unchecked or without intent. Please pray that Ella’s GI scare can be resolved quickly and that her parents can rely on Him for only the strength that He provides as we head into this next chapter.

2 Peter 1:3 (NLT)
By his divine power, God has given us everything we need for living a godly life. We have received all of this by coming to know him, the one who called us to himself by means of his marvelous glory and excellence.

UPDATE by Tina @ 2:25pm:
I wanted to thank everyone for the prayers and give a quick update. Once Ella woke up, Josh and I decided to go against the advice of the After Hours GI doctor – we did not go to CHOC.

We packed up everything and figured that we should be ready to go, but started to really discuss what we think that the hospital staff could do for us at this point. Unfortunately, not a lot. It would be a lot of torment for all of us and yet, what would they do? What would be gain from going? Also, we discussed what things concerned us about Ella’s condition. Does she seem like she is in a critical state? Both of us felt like things have not been great for her, but she is not in a critical place. The more we talked about it and looked at the clock, it was getting close to 10am. Ella was still sleeping. The last time she had diarrhea was 5:45am. That was a good sign. As of midnight, her diapers had significantly reduced overnight as it became further and further away from the last time she had formula. Even the GI doctor did not seem too overly concerned about the blood since it was such a small amount and she is not having any other signs of distress. When I researched online, it could just simply be anal fissures or sores that are still healing or may have opened up with the bout of diarrhea. Or she did pass a brick earlier this week and it might be from that too. The reason the GI doc advised us to go to the ER is because of the dehydration component. It’s tough to manage her diuretics, her fluid status and her hydration needs. But based on our experience the last time we were at CHOC, we decided that we know Ella way better and are more equipped to handle her needs.

We’re using only Pedialyte for the rest of today and give her intestines and gut a break. Once we gave her the fluid and she woke up at 10am, she was in a great mood. She is not displaying any other signs of concern: cramping, abdominal pain, retching/vomiting, fever, etc. Also, the last bout of diarrhea was early this morning @ 5:45am. She has given us solid pee diapers this morning which tells us that she is not in a place of being too dry. Since we were not changing a diaper every hour, her bottom has had a chance to heal from the diaper rash. Thank Goodness!

Things could change at any point. We’re just watching her closely and looking for any signs that might indicate that we need to go to the hospital. We’re hoping that things just settle for her the remainder of the day as we keep her hydrated. Pray that we can stay away from CHOC!

UPDATE by Tina @ 8:55pm:
We’ve successfully stayed away from CHOC today – Praise God! Plus, Ella’s diaper rash is gone. Why? She has not had diarrhea all day! As a matter of fact, the Pedialyte solution has been great. It’s kept her hydrated but not uncomfortable. She has peed a bunch which is a good sign and no scary diapers, no stool at all (she hasn’t had anything to stool). She acted more like herself today than we have seen in a long time. So, we’re hoping for a restful night and a decent day tomorrow once we introduce food again. At this point, we’d still like to try and leave in a few days to head back home. Please pray that we will be able to make that happen!

The Williams on May 16th, 2010 at 8:39 am #

Good Morning The West Family… may God continue to give you guidance and direction on what to do with Ella’s care. She is such a precious child of God and praying that everything is resolved and that you both are at peace with coming home… may you have a safe trip back to Denver. Love ya!

Dana and Lauren on May 16th, 2010 at 8:41 am #

So sorry to hear this Tina… It has got to be so tough to function on little sleep and have unresolve about Ella.

Amber Riley on May 16th, 2010 at 9:35 am #

Praying for you…

Anne on May 16th, 2010 at 9:42 am #

Prayers are coming to you from Gainesville.

Felix on May 16th, 2010 at 9:45 am #

Hang in there guys. We have you in our thoughts and prayers.

julie kirk on May 16th, 2010 at 9:46 am #

i am so glad you have family around you right now, the support from family is like a daily blood transfusion. Rest in Him sweet West family as the rest of us lift you up. Love julie

mollie rosing on May 16th, 2010 at 10:43 am #

praying for all of you (always)…keep up the good fight. love, mollie and family.

Dawn Franck on May 16th, 2010 at 10:54 am #

Oh Tina, I hope they can resolve Ella’s newest issues without admitting her to the hospital again. I also hope that she becomes well enough for you guys to head back to Denver soon. Please keep us posted as usual. Take care, Dawn

Ellie Brown on May 16th, 2010 at 10:57 am #

So sorry things aren’t working out as you had hoped. I pray that Ella will feel better soon so you can start heading home.

Debbie Bennett on May 16th, 2010 at 11:44 am #

Sounds like C-Diff. John had it once from being on antibiotics for an extended time. I’ll be praying that they find out quickly and get her settled so that you can get back home! May God Bless you West Family!

Jim and Char Snyder-Jordan on May 16th, 2010 at 12:33 pm #

We pray daily for your stength and patience as well as Josh. We are continually praying that you can get what you need for Ella and for her recovery. We love you all.

Adrienne (Melissa's sister) on May 16th, 2010 at 3:21 pm #

Hang in there — sounds like you guys could use some BOUDREUX’S BUTT PASTE! You have heard about that magical formula haven’t you??? Great for diaper rash! Wish I was there to give you some myself — along with some chicken noodle soup and warm chocolate chip cookies.. somehow that just makes everything seem a little brighter. Hang in there Sweet Family….

sherry martinez on May 16th, 2010 at 3:50 pm #

good for you keeping her out of the hospital is always best. hugs baby cayden and sherry

Fran on May 16th, 2010 at 5:30 pm #

Prayers for continued strength sent your way. It is good to hear that because of your knowledge you have been able to avoid returning to CHOC. Anxiously awaiting your return to CO.

Todd Katler on May 16th, 2010 at 5:48 pm #

I’m sorry guys. I hope everyone is doing better soon.

Lee Ann on May 16th, 2010 at 7:28 pm #

Hang in there Ella & family! Lots of people praying for you guys.

Loren Lizotte on May 17th, 2010 at 6:32 am #

Thank god things are improving. When I saw the post yesterday my heart sank. I think you are doing a fantastic job. Keep up the good work Josh and Tina, you guys clearly can provide all the best for Ella.
God be with you

Jennifer Harris on May 17th, 2010 at 8:36 am #

You are an amazing family! GOD is guiding you through this journey and we thank you, again, for sharing. Know that your family is in our prayers.

The Brittain Family on May 17th, 2010 at 9:48 am #

Good job, Parents. God does give us wisdom when we ask. Praising Him with you for the insight He gave you for the day. We keep trusting with you! Glad she’s doing better.

Jen Knab on May 17th, 2010 at 10:42 am #

Thank you for sharing your journey with Ella. I am sure you are exhausted and your stamina is amazing. It sounds like the detour from CHOC was a good idea. You made some really amazing points about being /living where God wants you to be although it’s challenging. Stay strong and you’re in our prayers.

Steve and Joan Odell on May 17th, 2010 at 10:52 am #

My computer crashed so I wasn’t able to read the news till just now. We are so sorry for the trials Ella is going through which in turn become anguish for the two of you. Prayers continuing for healing and safely return home. Hugs and Lord Bless, Steve and Joan

Mark Martinez on May 18th, 2010 at 1:43 pm #

Josh, let me know if there is anything else that you guys are needing. Hope to somehow see you once more prior to your return to beautiful CO. And, yes, CA is ridiculously expensive!

Joel snyder on July 5th, 2010 at 5:21 am #

Ella, I am praying that you will feel better soon. Love,Grandpa!!!!!

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