Thursday, March 29, 2007

We are completely disoriented.

Wednesday: seemed both comforting & productive. We all really believed she turned a corner.

Today: cards...visit (http://www.st-johns.org/visitor_info/cheercards_home.aspx) to send cards to Regan. Apparently they are printed out in a little gift shop here in the hospital & delivered by a little-old-man-volunteer. After he had made multiple trips to our nurse's station, Chantell overheard him ask, "Who is this girl?" After the nurse explained, he said, "We've never had this many messages for one patient...we barely get this many for the entire hospital!"

It's amazing to think how many people are impacted by this little girl...who has never spoken a word. You may not realize it, but this blog is read by people all over the world (it would be encouraging to read your responses/prayers)...now that is some community...and it gets the attention of the hospital workers & doctors around us. They all wonder, "Who is this girl? Who is this strange community that supports her family?"

We hope that they eventually ask, "Who is their God?" Because we all know that as much as we really do love Regan, this is also about God. We're watching & supporting Regan for His name's sake. We really want to see God's power in the weakest places, to experience it and to praise him for it....don't we? Don't you? Isn't that what you're looking for here? We all desperately need to see God's presence in Regan's life. Our faith may depend on it.

4pm: I arrived @ the hospital w/ the older two kids. Regan looked about the same as yesterday...disappointing, since I was hoping for more obvious progress. But she was alert, singing & laughing again.

6-10pm: she sent every monitor alarm into a fit and bounced her numbers around like basketballs. I've never seen her chest heave like that for so long. She seemed somewhere between panicked & excited. And I was scared.

6:30pm: Doctors have talked to us for years about DNR (do not resuscitate) orders, encouraging us to consider the limits of medical treatment we were willing to use. But this week is the first time they have asked us for an answer. They did it on Monday and again just now. We requested some changes to her treatment, hoping to settle down her system. (Do we even know what we're talking about?)

8:45pm: Chantell and I had to decide whether she should go home w/ the kids as planned or stay w/ me just in case. Should we have the kids camp-out in the family room? How are you supposed to make those decisions? And how are you supposed to live with their consequences?

We tried to watch the numbers on the monitors & find some trends. Finally, we just had to go w/ our gut...we decided that they all needed rest, and that Regan would probably pull through the night.

9pm: I'm divining every blinking light in the room for some sign that we made the right decision.

11:30pm: Right now she seems as peaceful as she's been in awhile. Her numbers look better. She sounds better. She's breathing a little easier. The changes we made 5 hours ago are paying off...so I'm going to bed.

Tomorrow?: I honestly have no idea what tomorrow holds. I don't know whether to anticipate progress or pain. So I have to rest in Psalm 33...read the whole thing when you get a chance. But take this w/ you for now: "We wait in hope for the Lord; he is our help and our shield. In him our hearts rejoice, for we trust in his holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in you."

13 comments:

Julie said...

Regan's faith and life are well represented by you all. It's true that she has taught me more lessons of faith and love than anyone I know and yes, without a word. Part of that is because you all have been faithful to her and to the God who entrusts her to you. You are ambassadors for God in your love and respect for Regan's fragile life and powerful testimony. He knows that you entrust her to Him, and that's why your decisions will be blessed...whatever that looks like. My prayer is that you find rest and peace in your decisions. You already sound like you know that your many brothers and sisters are deeply in prayer for you and Regan. I do hope that is emotionally and spiritually refreshing, if even to a small degree. My heart breaks for your pain. At the same time it rejoices in knowing the impact that you are having at this moment throughout the world of believers and nonbelievers alike who are watching and waiting with you. I wish that rejoicing wasn't so tainted by suffering.
Tonight, as has been the case for several nights, I pray for rest, peace and strength.

Keeping a watchful eye to the horizon,
Julie

shannon said...

Again, thank you for taking the time to write, so we can know how sweet Regan is doing. I'm praying for rest and continued strength and peace that goes beyond all understanding for you all, and for the God of all comfort to continuue to comfort you.

Patti said...

I found out about Regan through church. I have posted your blog on mine to share her need for prayers even further.-Patti Alexander

Tesha said...

As I am waking every morning and praying for you the same hymn comes to mind everytime. "...my hope is built on nothing less than Jesus' love and rightousness" It seems as I am praying for you without ceasing I cannot get this song out of my head!
With all our love from the Woods family!!

Norman said...

Jesus Loves ME this I Know for the
Bible tells ME So.... No doubt HE
Loves you Regan! How you are able to smile and laugh when we see your pain? Life does not seem fair and yet you are held in the arms
of the almighty God in such a special way. Words cannot explain and faith only encourages us yet
leaves many unanswered questions.
Your Mom Dad brother and sister share how wonderful Jesus love
is by the way they love you!
"Trust in the Lord...."
"Take delight in the Lord..."
"Commit everything you do to the Lord. Trust Him, and He
will help you. He will make your innocence as clear as the dawn, and the justice of your cause will shine like the noonday sun."
"Be still in the presence of the Lord and wait patiently for him to act." Ps 37
You are wonderful Regan!
Sometimes it is hard for me to Trust?
I love You Regan Grandad

Dawn said...

We are praying down here in Albion. We know your faith in the everlasting love and grace of Jesus will see you all through this time of trial.

May God grant you peace!!

With Love, the Phelps Family

Suzanne said...

Thank you for letting us share in your lives and in your faith. We are continuing to partner with you and God and this community for little Regan's life. Regan, thank you for your sweet smile in the midst of pain. And thank you for sharing Jesus with SO many people. You are an amazing ambassador for Him! We love you all.

Maya said...

I am so reminded how Christ is our ever present hope in times of suffering as well as times of perfect peace. He is sufficient and He promises to meet all of our needs in accordance with his riches and his GLORY. I have never actually met Regan but I work in the cubicle right next to her grandma, Vera Lu. I can say with confidence that is the glory of the Lord is SO BEAUTIFULLY displayed through his child Regan. She has His spirit and is being held so fervently in His arms of love. HOW BEAUTIFUL is Christ's love displayed in this family as a whole. In his body of supporters both friends and family alike coming together and recognizing that we are one body through Christ. I am reminded that Christ never promised the road would be easy or that life would be trial free. He actually said that we would face many trials as He had faced many trials. But to take heart because He has OVERCOME the world. He has overcome Regan condition on this earth. His hope is alive in Regan and it will never die. Jesus glorify yourself in Regan and let your will be done on earth as it is in heaven. She is walking in His Glory. She is hearing well done, well done, well done my good and faithful servant. What a beautiful God!
May His face shine upon you all!
With love, Maya

'becca said...

Yesterday we visited a church and prayed for Regs. Sweet Regan, Elliott is asking about you often and so is Chas. E prayes for your lungs to be strong. It is hard for him to know his friend is in the hospital. He sends a big hug and can't wait to hear you sing to him soon. We all send big kisses and love from Mexico!
C, B, R & R - We send you hugs and love too. We are paying for you to have strength as well.
Love,
'bec, Elliott and Chas

Vanessa said...

I am encouraged and inspired by your testimony. You are all in my prayers!

Keri said...

Prayers are being sent up from Utah...prayers for the entire family.

klee413 said...

Your family are in my thoughts & prayers down in Kansas. ~Kerri

Shannon said...

I love you guys and have no words to say about how much of an encouragement your family's faith in hard times has spoken to my life. Me and Central Christian Church are praying for Reagan. Love you.

--Shannon Carter