Ashley's Story

She will leave fingerprints all over your heart

2/19/2008

Complications

Ash has presented with a complication. For days the fluid that is being discharged from her lungs has turned from a clear fluid to a milky fluid. We sent it out for testing to see if the triglyceride level was higher than it should be and last week it proved not to be. We were all a little confused, but accepted that what they thought was happening to Ash had not. Today they tested it again. The level came back 3 times higher than it should have proving that she had suffered a chylothorax. From what I can tell it is an injury to her thoracic duct and lymphatic system. Basically our best guess is that it occurred by accident when her chest tube on the left side was placed. What is happening is that lipids or fat is leaking out of her lymphatic channels into her plural effusions. What do we do about it? We remove all fats from her diet. Since all she is fed is formula we have put her on an elemental formula that has no fat content in it. As we wait for it to heal (which could take weeks to months meaning the chest tube will have to remain that long) we continue testing the fluid and wait for it to return to the normal pink tinged clear fluid that should be coming out. If it doesn't work then she will be taken 0ff formula completely and become TPN dependent until healing occurs. The fellow came in this afternoon and was trying to explain it all to me and finally she said, "All I can tell you is that this chest tube is going to have to become as dry as the Sahara before we pull it out." It was at that point that I felt the walls caving in and begin to overwhelm me. In extreme cases of chylothorax it has to be corrected surgically. I don't even want to think about that.

So this evening I am feeling discouraged. Wondering when and how we will make it back home. My heart is sad and I tell myself that God has not been taken by surprise. Even though I KNOW that to be true I stare at that little pickle lying on the bed across the room and wonder just how long it will be before she is back in her own bed. That's really all I want. Her home. Her bed. Her family.

The whole vent issue is a long story as well and to be honest I am just emotionally drained. She will more than likely be on the vent all week long because the plans have changed again with the change of physicians. They rotate weekly and it seems they all do things differently. She remains on the lowest vent settings possible and that is encouraging, but there is no plan to extubate anytime soon. Hopefully it won't be too much longer because she HATES the breathing tube.

Other than these issues it was a good day. Ashley slept for 12 hours of it. From 6:30am to 6:30pm. She woke up to sing "itsy bitsy" and then by 8:00 she was sleeping again. I told you we were exhausted! I was so thankful to see her resting and not withdrawing today. That was our blessing in the middle of all the other nonsense.

Now that I have completely rambled on and on and probably lost most of you by now I will close by saying how much we love you guys. This is an incredibly long road and I can't believe your still walking beside us. Thank you so much. Good night. Trish

46 Comments:

At 10:37 PM , Blogger Morgy's Mama said...

Trish,

What is happening to Ashley, the chylothorax, the thoractic duct tear... we've been there. We are a success story that did not require surgery... we even had Morgan transported via Angelflight from Savannah,GA to Houston,TX b/c TCH was willing to go a route other than surgery for healing. I say all this to encourage you. If you have any questions I have opened my blogger profile so that you may ask there, or you can email me at amy_nichole03@hotmail.com. If we can be of help or lend specific encouragement, we want to do so. We've always said, we experienced that for a reason. Love and hugs from home!

 
At 10:38 PM , Blogger The Rutland Family said...

Please know that however long this road is, you will not walk it alone. You have Christian brothers and sisters praying for your family all over the world. We lift you all up daily and expect great things from the Great Physician. God will make a way when there seems to be no way!
Pam in GA.

 
At 10:40 PM , Anonymous Anonymous said...

Trish my sister in Christ you are loved and so is your little pickle. She will, by the Grace of God, be healed. I pray that you remain strong in your faith and just keep doing what you do. God is in control so try not to stress too much( like thats possible for a Mom). Know that we all love you.
Always praying,
Robin in Florida

 
At 10:42 PM , Blogger CrownLaidDown said...

Praying. Thankful for itsy bitsy and especially Ashley.
Much love,
holly

 
At 10:47 PM , Anonymous Anonymous said...

I am so sad at the news of the chest tube. However, we have amazing hope in our God. Only He could give the gift of such a sweet smile in the midst of all of this today. I feel as if I am clinging to Him on your little pickle's behalf. You must be so exhausted and I could not even begin to imagine what this day has done to you and your family emotionally. My prayer is that Ashley will have peace and smiles even with all the nasty tubes. That you will be able to take one day at a time on this journey, because we trust that Our God will continue to amaze us all. I pray that He will uphold you and stay with you with an amazing presence that is felt throughout the room. That your Dr.'s will be kind, compassionate, and have the utmost personal concern for Ashley's situation. You are not forsaken, Ashley was bought with a price, He had her on His mind when He stayed on the cross. Cling to Him and I and all the brother's and sister's in Christ will cling with you. Hurting, hoping, and praying for you, Colleen

 
At 10:50 PM , Blogger Paulette said...

I have added this to my new prayer for Ashley, May the father just take care of it. At least they found it. I came by to say another prayer before retiring, May the Lord give you both a great night sleep tonight.
Hang in there.

 
At 10:52 PM , Anonymous Lisa said...

The Lord my God holds my right hand, He is the Lord, Who says to me, Fear not, I WILL HELP YOU.-Isaiah 41:13

Still praying hard for Ashley and mom, Father God please give comfort and peace and rest, speed healing of Ashely little lungs please, Father God you know our hearts and you hear our prayers all those spoken and unspoken. Thank you for today, for low vent settings.

 
At 11:08 PM , Blogger Dee Dee said...

Totally confusing, but we are praying for you all, knowing that - as you said - our God is not surprised by this, and neither is He even so slightly confused! Praying you rest well. I think that is such a great need for someone in your shoes, just the rest to be able to mentally function in an environment where things change every day and the rug so often seems to get pulled out from under you. I am so sorry and pray this complication will clear up very, vey soon.

 
At 11:20 PM , Anonymous Anonymous said...

Trish and David,

I am still praising God for your continued steadfast walk with Him, for this unfailing love you have for Ashley and for the marvels of modern medicine. I pray for your rest tonight, for peace for your family and healing for Ashley. Good night from San Antonio.

Phillip S. Hull

 
At 11:24 PM , Anonymous Anonymous said...

Please forgive me if this is too personal or upsetting to think about. I ask only for understanding because I'm trying to comprehend this in order to pray. Does the NON-fat formula provide the nutrition that is required to help all of Ashley's systems be fed to heal? I am remembering when she was a tiny newborn and you were explaining that the TPN was a necessary evil because she had to receive some kind of nutrition in order for her body to have fuel to grow and heal. Does the NON-fat formula do that? (I'm thinking about how babies are supposed to have fat if possible.) Again, if for any reason you don't want to answer, I understand, but I'm trying to make sense of all the medical stuff I'm ignorant about because I'm so concerned for you all and the amount of time it sounds like this could take. My mom is here and we're praying together with the kids very often for Ashley - and a lot for Allie and for your travel plans to work out, somehow, by God's grace. Hang in there. I know that's so easy for me to sit here and say. We want you all back together so much, too. I hate the hard parts of this for you and David. I know it's the necessary spiritual part, like the TPN, but I still wish it didn't hurt so much. Love you all.

--Nikki

 
At 11:29 PM , Anonymous Anonymous said...

Praying here I will always pray for Ashley and her wonderful family. I am sorry to hear that it may take a while for her to heal I will defiantly be praying that it is on the shorter side of their expectations. (((hugs))) ~Chan~

 
At 11:47 PM , Blogger The Dean Family said...

Trish,
I am so sorry to hear about the complications. I will be praying ever so fervently. Know you are loved my dear friend.

Love,
Angela

 
At 12:23 AM , Anonymous Anonymous said...

Trish,
I'm very sorry to hear this news. Please try not to be discouraged. I know that is much easier said than done...I am praying for you to have continued strength to endure all of this.
We will be here praying for you and Ashley and of course Dave, Blake & Allie too! I have been reading this blog since you started the journal area and I have visited every day! I will not stop now! I will not ever stop praying for you all. You have become a part of my life and that my dear friend in Christ can never change! I know that I'm not the only one that feels this way! You have a lot of people in this world that love you and your family dearly and that will stick by you no matter what. Most of all....Jesus Loves YOU!
My heart aches right now to think of all you are going through but I just know that soon there will be happy tears again! Ashley is such a fighter...bless her little heart! She must get it from her mommy ;o) Sorry this is so long...I get a little windy at times, I hope that's ok.
Just know we are praying here and always will be.
May God Bless you ALL!
~Okla

 
At 12:26 AM , Blogger Gretchen said...

Lord, heal her, I pray. In Jesus' name. Amen.

xxxooogretchen

 
At 1:08 AM , Anonymous Kathleen said...

You are not walking alone! We are out here walking it with you. Praying this complication will clear up soon and that her lungs will heal.

"Do not be anxious about anything but in everything with prayer and petition and thanksgiving, make your requests to God. and the peace of God which transcends all understanding will guard your hearts and your minds in Christ Jesus"

May God continue to give you encouragement.
Love you guys!

 
At 1:27 AM , Anonymous laughing mommy said...

I came over from Especially Heather a week or so ago. I'm praying for Ashley and your family.

I have a two year old daughter. I cannot even think about the things you are dealing with without my eyes welling up with tears.

God bless you and your family. Praying for a speedy recovery for Ashley.

 
At 1:31 AM , Anonymous Anonymous said...

IT'S HARD TO KNOW WHO WAS MORE BLESSED IN THIS FAMILY'S STORY...ASHLEY OR HER PARENTS! GOD WORKS IN MYSTERIOUS WAYS!

 
At 2:53 AM , Blogger Debi said...

I am guessing that you and Ashley might be awake right now since she slept so much today (actually it was yesterday now). I just wanted you to know that the Holy Spirit is faithful to keep the nightwatch prayer vigil going for you both. I can't sleep right now and am coming to His throne by the precious blood of Jesus to intercede for you. But better than that, "He is ever interceding for you and your family." That is hard for me to comprehend, but it is so true and so powerful! He promised! I pray that His presence, and even His ministering angels would be so real to you as they are right in the room with you. He promised! Why, He may just come take us all Home before the night is over! As so many have said, you are such a blessing! I check for updates many, many times a day. And I so love the pictures. That smile was priceless this afternoon!!!

 
At 5:23 AM , Anonymous Anonymous said...

Trish, With joined hands, we all are and will continue to walk this road with you.Keeping the littlest pickle and her sweet family in constant prayer. Glad her little body got some much needed rest.God Bless..Karen

 
At 5:26 AM , Anonymous Anonymous said...

We are here for the long haul too. You are not alone.
Praying in CT.
Heidi

 
At 6:21 AM , Blogger Tink said...

I am sorry to hear this but try maybe looking at this as Part of her recovery.. its better that it happenned now rather then getting her home and having to bring her back again..Ashley will heal and she will be home with you soon, My alter is still lit and still the healing energy,s and prayers flow.
Brightest Blessings to ALL...

 
At 6:41 AM , Blogger Carey said...

Praying for your sweet Ashley to heal quickly.

 
At 6:44 AM , Blogger camille said...

Trish,
I too am so sorry to hear this news. I'm praying for a miracle for your family.
Thinking of you.

 
At 6:55 AM , Blogger Colleen said...

The picture of your beautiful Ashley made me smile. What an incredible gift she is. I'm so glad that you both got to play yesterday. And thanks for sharing that wonderful time with us! Thank you for showing us what The Lord can do.
Praying for a miracle with Ashley's lungs and the newest complication.
You're all in HIS hands!
Colleen in NY

 
At 7:09 AM , Blogger Judy said...

(((hugs))) and prayers are coming your way.

 
At 7:24 AM , Blogger Sarah & Family said...

Praying for great healing and comfort for your dear sweet Ashley.
-Sarah in Wisconsin

 
At 7:31 AM , Blogger Elizabeth S said...

God, we don't understand why all this is happening. But we know that you do. And we know that you can heal Ashley. Please take this away from her. Please be with Trish as she is taking such good care of that sweet baby. Please be with the rest of the family back in Longview. Keep them close, eventhough they are far away. Please be with the doctors and nurses who are taking care of her. This is an amazing family and they only want what you want. Please heal her. Please heal her. In Jesus' name, Amen.

 
At 7:49 AM , Anonymous Anonymous said...

I am so sorry to hear all of things that you went through yesterday. I just wanted to let you know that my family and I are still thinking about you and praying for you. Hugs to you and your sweet little pickle. God Bless...Leigh Ann

 
At 8:07 AM , Anonymous Anonymous said...

I'm so sorry to hear about the complications. Praying for Ashley and your entire family. I hope today will be a better day for you and Ash.

Jennifer in OKC

 
At 8:14 AM , Anonymous Anonymous said...

You and your sweet family are in my daily thoughts and prayers.

 
At 8:34 AM , Blogger Amy T said...

Trish, we will continue to walk this road with you. There's not much we can do physically for you, but we sure can pray and will continue to do so. Praying it clears up sooner than expected, for extubation soon, and for strength for you. May you continue to see that sweet smile when you need to most.

 
At 8:35 AM , Blogger Sun said...

Oh no! I am so sorry - yet praising with you on the fact that she is resting! We are lifting y'all up and thinking about you! Sunshine

 
At 8:35 AM , Anonymous Amy in PA said...

Lifting up your sweet girl in prayer and continuing to believe that she will be HEALED. God bless and keep fighting, Ash!

 
At 8:47 AM , Blogger My Pride and Joy said...

Trish and Ashley,
I am so sorry for the complications right now. May God lift and heal Ashley completely, soon. I pray in Jesus name. Amen
I too have been there with the thought of loosing my baby here on earth. God healed him at the time. Thanks be to our Great Father.
More prayers coming from Wisconsin for my sisters in Christ. You are never alone!
Kim

 
At 8:53 AM , Anonymous Anonymous said...

I along with many others don't intend to stop now checking on you and praying for Ashley. You are such an inspiration to me and I love being reminded daily how FAITH works and how God is still in the healing business. Praying for you and for Ashley today. Praying for Dave, Blake and Allie in Longview. May He continue to give you all the strength that you need to walk this journey. I believe much of that strength comes from the many prayers that are spoken on your behalf. God is Faithful!

 
At 8:57 AM , Anonymous Anonymous said...

Oh Trish,

I truly know that you are disheartened. Draw strength in the Lord, knowing that they did find out what is causing the fluid to change and now are on the road to "fixing" it.

I'm glad to hear that sweet Ashley was able to get some sleep that she badly needed. Lord willing, that will help her to heal as well.

We'll keep you in our prayers as always. Love in Christ, TM in WV

 
At 8:59 AM , Anonymous Anonymous said...

I have come across your blog through another and I want you to know that I am praying for you and your sweet Ashley and your family back at home! I pray for healing and for rest for you both! You can handle things so much better after having rested! I pray that you get that today! You are not alone! Trust in the Lord! Franklin, TN

 
At 9:10 AM , Blogger Grace, Tre, & Faith said...

We will continue to walk with you. THANK YOU for the constant updates. God bless. We will continue to pray for healing and strength.

 
At 9:17 AM , Anonymous dee buchanan said...

i must have missed your last post by seconds yesterday. Praying for physical and emotional strength today. Hang in there, Trish.

 
At 9:24 AM , Blogger Keri Ann said...

I'm sorry to hear about this complication that has crept up. You're wise to realize that it is not a surprise to God, although it certainly isn't welcome news to those of us hoping for a quick recovery for Ashley Kate!

However, God can shorten the road even though it looks longer now, and that is what I will be praying for! He made her body and He knows just how to heal it, whether through doctors' interventions or supernaturally on His own.

 
At 9:26 AM , Blogger Laurie said...

Trish,

I will be walking this road with you and Ashley for a long, long time and won't be taking any detours any time soon. I don't understand all of the medical things going on, but God does and I ask Him to take care of them. I want to encourage you to take even the smallest of blessings that come each day and take them as His promise that he will not leave you. I am praying for healing for Ashley and for you to be able to get back home. God will make it happen, in His time.

Love, Laurie in Ca.

 
At 9:29 AM , Anonymous Anonymous said...

Trish...indeed this is not taking God by surprise. Remember HIS perfect will is always done and done right with HIS expected end..one of peace. Peace in HIS work done as he ordained.

TRUST is vital in surviving what you are going through.

BE STILL...and know that I AM GOD.
Psalm 46:10

these words say...wait on me, trust me....there is none else but me...

Psalm 73:25-26 Whom have I in heaven but thee? and there is none upon the earth that I desire beside thee. My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever.

When all else seems to fail...our hearts must be drawn totally to HIM. Totally trusting. Totally yielding HIM as our all in all.

Time is only an element in this life...ETERNITY says PEACE to all who know him and have trusted him as their personal LORD and SAVIOUR.

One day you will look back and know that GOD showed himself over and over again and you will continually rejoice in knowing HE CARES..HE LOVES.

Ashley is God's creation...for a purpose...to strenthen faith in you, others...to show his marvelous works that man cannot explain...and to trust HIS judgments whatever they be...

HE is GOD and he does all things right and good. Though we don't see it all in one big picture...we will one day.

Have courage...trust.
HOPE...
(@wateringwellsofhope)

 
At 10:10 AM , Blogger Michelle said...

Poop!!! That is all I have to say about that. Well, I will pray for clear pink tinged fluid. I will pray for rest for you as well.

 
At 10:18 AM , Anonymous Stephanie - KCMO said...

Still praying. Love, Stephanie

 
At 10:40 AM , Anonymous krista said...

Hoping today was a better day. Ashey has left such an impression on my heart,as soon as I see the title my heart leaps or else I immediately start praying for whatever it is ...

You all are in my thoughts and prayers, Hang in there...soon, soon it will be healing.

krista

 
At 10:52 AM , Anonymous Anonymous said...

What a wonderful mommy you are and your children will definately look back on these hard days and say "Wow!" We will be praying for you and your family. Remember that each day the Lord has you there, He has a reason. Let Him work through your precious testimony and spirit. He can do amazing things with you and your situation. God is so good! One of my favorite verses says >As your day is, so shall your strength be. (That is my version! :)) Hope you continue to enjoy Ashley Kate's smile and get some much needed rest! You are amazing!!!

Nicki from SC

 

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