The Plan

We saw the new GI doc yesterday.  Here is the new plan:

*add pedialyte to each feeding.  This stuff isn't cheap if you've ever bought it.  We use such a small amount and the label says to discard within 48 hours of opening it.  Doing a little research to see what we can do to make this more affordable.   I really don't like dumping it down the drain!  BUT...she has been getting a good amount of it the past 2 weeks and going to the bathroom...forget it...I've tried to be ladylike in the past...I'm tired...she's been poopooing!  We cheer for it around here!

*add Zantac to her Prilosec...one dose.  

wait 2 weeks

add another dose

wait 2 weeks

subtract the Prilosec

wait 2 weeks

subtract a dose of Zantac

wait 2 weeks

subtract the other dose of Zantac

so...she should be off all reflux meds

*somewhere in those 2 week time periods we should be getting back with the doc

*we are also probably going to change her formula again...to something more like real food.  I've looked into the idea of doing a blenderized diet for her...basically cooking raw foods and blenderizing them for her.  It's a lot of work and something I know NOTHING about.  In fact, I had to take Nutrition in college and it was awful and boring.  My brain just doesn't work that way.  BUT we will figure it out if we need to.

So...thank you all for your prayers.  It wasn't a quick fix like I was so hoping for.  God is obviously thinking I need to work on my patience lately.  

Battley's respiratory infection is all cleared up.  If you don't believe in the power of prayer, then let me just tell you that we held a lifeless body only 2 weeks ago a few times.  She is back to smiling now.  God is good and answers prayer.

She is still struggling with her stomach.  The daytime seems to be going better with the new meds we started last week...erythromicin.  The night is a whole different story.  She has been screaming in pain most all night for a long time.  It's so exhausting to try everything you know and nothing helps.  Please continue to pray for her...pray this new plan produces a resolution to her pain.  Thank you!

C

Monday Update

I have some good news, some disappointing news, and a major prayer request.  

Good news:
I made it Friday without all day help!  I had some good help, but not all day long...and it was okay. 

Battley had awful bile Thursday and Friday.  We tried a new med starting Friday night.  Erythromycin.  It helped immediately.  She was able to have her milk Saturday and Sunday with no bile, no screaming, and no bubbles!  

Because of that she got good rest and we were able to wean some oxygen settings.  She is now down at a reasonable level and I can leave the house with her if needed!

Not so good news:
The bubbles, bile, and screaming were back last night.  Because of that she didn't get good rest and her breathing isn't as good this morning.  Her sats haven't been amazing.  

Prayer request:
We are seeing a new GI doc on Wednesday.  Please pray that he will take time to fully understand what has been going on for the past year, have some answers for us, and we will see immediate results from our decisions.  

Battley is one tough girl.  It's so hard to see her in pain and not be able to help much.  Her respiratory infection seems to be much better.  She just needs more rest.  

I could NOT have done last week without help.  We had meals, help with chauffeuring H, a house cleaner, a laundry helper, a few baby rockers, a wal-mart runner, an errand runner, and daytime helpers.  

My friend Sam stayed a day, my mom stayed a day, and my Aunt stayed 2 days!!!  

Then on top of all that, you guys are praying for us.  Thank you!  We are so blessed and humbled by your love for us. 

C

Thursday Night Update

Battley rested very well today.  I wasn't able to wean any oxygen settings, but we didn't have to make any increases either.  She is having major stomach issues.  Every few hours she will scream and have bile that needs to come out...yuck, but also painful for her.  I am working hard to calm her tummy so we can get back to regular feedings.  Right now she is just on Pedialyte to rest the tummy.

Hmmm...what else?  Tomorrow I will attempt to do this on my own for longer than a few minutes.  I have a few people coming to help, but there are gaps.  Hoping those gaps are peaceful.

Please continue to pray for Battley's stomach and her breathing.  Thank you!

C

Wednesday

Adam and I took Battley to see our #1 doc on Monday.  We had some tough conversation.  We did 2 things after that appt.  We started her on decadron (a steroid) for 5 days and added a humidifier to her oxygen concentrator.  By Monday night she was shaking toys...steroids are powerful!  Then we had a few setbacks and a bad night.  

Today is Wednesday....I think.  She rested well last night and was awake some this morning.  Other than a jolt of energy the steroids give her, she has been very lethargic and mostly sleeping for days.  She also hasn't been able to have much milk.  She's had plenty of pedialyte though.

Today I hope to keep her stomach feeling good.  We are using carafate and mylanta.  Also to get some milk in her.  We have been able to wean her oxygen down to a more normal setting. Maybe we can do another wean later today or tomorrow.  

She seems to be improving.  I am hopeful that that is the case at least.  

Thank you all for your prayers.

You know how people always say, "well let me know if I can do anything to help"...well I have certainly done so this week.  So beware...if you say this to me I will have a chore for you!  The help has been wonderful and given me time to pay some much needed attention to jm also.  My aunt stayed with us yesterday, and he and I even walked around the block once.  Before that I had only been outside twice in the past week to load and unload going to the doctor's office.  

Keep the wonderful healing prayers coming.  She needs rest and this stomach issue to feel better.  

C

Sunday

It's been a rough few days.  Battley has some kind of respiratory infection.  I will not go into too much detail but we have had a few moments we thought may be her last with us.  We are probably having hospice come again...kind of waiting to see how she does today.  She was stable overnight.  But only stable...not good.  She is on a lot of oxygen.  The cpap did not work but we will try another day.  Please keep praying for her.  Pray for her to get good rest, be able to cough and get junk out, for is to be able to wean her oxygen, for her stomach (she may have some gastroenteritis) and for total healing.  Thank you!

This is from a friend of a friend and so beautiful I wanted to share:

Lord,
You are mighty and strong and because of your grace and love we can overcome this world! I pray you will draw close to this family. Give them the peace that surpasses all understanding! Give them endurance to endure all things. Give them strength when there is none left. Give them help when they least expect it. Give them love from unusual places. Give them hope from heaven! Lord, please don't let them focus on this life! It is only for a moment we are here. Set their sights in your heavenly kingdom! Lord, thank you for this temporary life. Thank you that it's only for a moment, and we have no time limit with you! Thank you for owning time! How precious you are and how much love you have for your children! Today is Valentine's day... Happy Valentine's Day, Lord. You gave the best love gift of all- the cross! I praise your strong and powerful name! I love you, Jesus. Amen

H has a partially torn ACL.  The doctor is hopeful he can rehab it and may not need surgery.  He will do pt 3x a week for 4 weeks and then we will check to see if healing has taken place.  If so, more pt.  if not, surgery.  

Jm has a double ear infection and a cold.  

Our friends and family are taking such good care of us.  I will probably be calling on many more for help (only those that are illness free though, please!  We can't bear any more here). We have clean laundry; a happy baby boy who has napped and been rocked and nebulized; more food than an army needs; an out of this world dr and his nurses; and best of all wonderful prayer warriors!  And green beans with pieces of heaven (bacon i think) in them according to Adam!

C

What a day!

What a day!  Battley seems to be feeling a little bit better.  Please keep the prayers coming.  She only woke up 2 times last night...whew!  She is having trouble breathing well, so she is still on some oxygen until she is more stable on her own.

Today I am working hard to get her oxygen where it needs to be so her sats stay where they need to be.  My trusty little helper (the oxygen saturation monitor) is beeping at us often.  Our other goals are to get JM to nap more than 45 mins at a time and get H to his MRI appt.

JM has a nasty sounding cough...just a cough, but send up a little prayer for him too.  We don't want him left out.

Never a dull moment here lately.  Her oxygen concentrator stopped working late yesterday after a technician came by for a routine check.  We have tanks, but those only last a few hours and would not get us through the night.  I called the oxygen company but they were gone for the day.  BUT God had a plan a few months ago when I had "a small issue" (not really...this woman was super rude to me and hung up on me twice) with our oxygen supplier.  I had to call the owner to get it straight.  You better believe I saved her number in my cell.  SO she got another call from me last night and had someone come right over to get us fixed up!  Funny how He works!!!  I really thought about changing suppliers after that last incident but something told me to hold tight.  So I will be thankful for our little broken machine bc who knows what God has in store next. 

Anyways, my mom and a dear friend came over to save me yesterday!  So thankful for them being able to do that!  I had a little nap and felt much better.  They also gave me a head start on my mountain of laundry. 

This pic was taken last night.  She was feeling much more herself!  Yay!

And today when we finish our MRI, we get to go meet our new "niece"...she isn't my niece by blood but by almost 30 years of friendship so I claim her as mine. 

C

  

Stomach Issues

I'm typing from my phone and going to email Adam so he can post this.  Battley is again having some very serious stomach issues.  She is screaming as often as every 20 mins in pain and has not rested well in days.  She needs your prayers.  She is on oxygen this morning which is always scary for us.  H injured his left knee at soccer last week.  This is the same knee he had an ACL reconstruction on a year ago.  He has an MRI on Wednesday.  So far it appears to be something that will require surgery.  We are praying for the lesser of the 2...meniscus instead of ACL or both.  Please help us pray for him.  He is being very positive and working hard on not having muscle atrophy this time. Adam and I need your prayers too.  We are beyond tired...mentally and physically.  C