Friday, May 3, 2013

Full of Hope

The past seven days have been quite the roller coaster.  Starting with the dry run, a trip to the ER, seeing how quickly Tricia deteriorated, and now seeing how much better she feels on the vent all in the past week.

As I mentioned last night, Tricia was intubated and placed on the ventilator yesterday morning.  She was observed for a few hours to make sure she accepted the vent well, and then given a tracheostomy.  She was fully awake two hours later and breathing so much easier.  Everything went perfectly, and she literally looked and felt like night and day between yesterday morning and last night.

If you were with us five years ago, you'll remember that she was on a vent for about 3 months from Gwyneth's birth until a few days after her transplant.  Again, she is unable to speak because she has no air flow through her nose/mouth and through her vocal cords.  My lip-reading skills are returning to me quickly.

You might also remember that Duke had very little experience transplanting a ventilated patient five years ago.  And, you might remember that Tricia was one of the very first patients at Duke to be placed on a brand new vent setting.  It's a setting called Proportional Assist...they told us that they literally wrote the book at Duke using Tricia as a guinea pig.  (You can read more about the vent setting HERE.)  What we didn't really understand until yesterday is that they now use this vent setting for many of their patients and after Tricia's transplant have had many successful surgeries off the vent and are much more comfortable doing so.

So, when I was guessing that she would be taken off the list, it was a wonderfully ignorant guess.  Tricia is now on the top of the list, and we are very confident that she will receive a call for good lungs very soon.  She will remain in the ICU at least through the weekend, and we're still praying that she can be moved to our very familiar step-down unit as soon as possible.  The staff in this ICU are amazing, but sleep is difficult and visitation is restricted.  The two things beyond great medical care that help Tricia the most are sleep and spending time with family and close friends.

Modern medicine and prayer are a powerful combination.  Thank you all for your continued prayers.  Tricia is still very sick, but we are full of hope, at least for today.

Nate

53 comments:

Anonymous said...

Praising God for this gift of time.

And, just yet another way Tricia has impacted people's lives. Think of all the other patients who have benefitted from her experience!

The B Family said...

Praise God! All the Glory to Him!

The B Family
Louisville, KY
Southeast Christian Church

Toni said...

Sending prayers for faith, strength courage and patience to you both, and comfort for Gwen.

Leslie said...

Thanks for the update. Prayers coming from PA. <3 I hope new lungs come soon.

Anonymous said...

Thanks for the update. Prayers coming from right here in NC. I hope new lungs come soon. Praying for you all!!

Judy K said...

And we celebrate in that same HOPE with you, Tricia and Gwyneth and your extended families!

Under the Mercy!

Nana Judy

Tamara said...

Thank you very much for the update. Praying in Canada!!

Anonymous said...

Praying for the knowledge God has that we don't, the peace of hope, the spirit of your family and the families of donors.

deb said...

Praying for your family, Nate. Deb and family

Anonymous said...

God still has this!!!!!! It is all GOOD!!!!! He is moving things right along, and He knows that this is going to work!!! I BELIEVE IN MIRACLES!!!!!! IN JESUS NAME, AMEN!!!!!

Stormy Seaworthy said...

Prayers for her and all of your strength. Xo

Anonymous said...

Praying for you'll. sg-KS

PK said...

Oh, what wonderful news! Keep up the great work, Tricia! (And Nate and Gwyne and everyone else...because I know it's no picnic for you guys either.) Still praying for you guys and everyone involved in your lives - family, friends, and the amazing medical professionals.

Mary Smith said...

Praise God! Just one more confirmation that God still has so much more in store for Tricia! Praying in Indiana!
So glad that 7 years ago while on vacation we pulled into the parking lot at Nags Head Church because we missed the service at some other church and we met you guys! It has been a blessing to me over the years to watch the story of your family unfold!

Beth and Luke said...

Thank you Jesus!!

Anonymous said...

Praise God!

Megan said...

Praying...

How amazing that Tricia being a "guinea pig" has benefitted others' surgeries...she has touched so many lives!

Anonymous said...

Praying for new lungs soon.

Vivian said...

so very thankful for God's mercy, comfort and His healing hand.
thank you for the update Nate!
prayers coming from Missouri
First Baptist Church Arnold!

Anonymous said...

I have been following your story, like so many others, from the beginning. I hope and pray for Tricia to continue to get better. You have a whole army of prayers behind you :) Keep the faith!

Mum2twopreciousgifts said...

Praying in Australia! M x

Madre said...

Sending love and prayers from New York. We have been following your story since before Gwen was born. May God do exceedingly - abundantly above what we can ask or think. I actually met your mother-in-law while visiting in New Jersey! Praying that each member of your family will stay strong and that Tricia will receive new lungs very soon.

Lisa said...

Still praying and checking frequently. On the blog thanks for the updates! Praise God Tricia is resting to prepare for her new lungs! Love to your incredibly remarkable family!l Lisa and Ty from San diego

Anonymous said...

My friend with CF went from the local ICU to the top of the list within a week, was transferred to Cleveland Clinic to 'wait it out,' and within 12 of arrival, donor's gift arrived. Miracles abound.

Mary said...

Total divine healing for Tricia in Jesus' name!! May it be so!!

Anonymous said...

What an amazing turnaround. The power of prayer is strong indeed!

How long can she stay safely on the vent? Or is the plan to remain on the vent until new lungs arrive?

I am in awe of Tricia's determination and will to survive! I bet her sweet baby girl serves as a huge motivation for her!

Anonymous said...

Storming the gates of Heaven for Tricia...
May her new lungs come in time to provide her with a complete healing.

scaryshari said...

"While there's life, there's hope!"
I'm not sure who that quote is from; I think the writings of an ancient Roman or Greek. But I believe it strongly! :) As long as you're alive, there IS hope! Even if it's a nearly microscopic amount of hope, it still COUNTS! And it can still HELP!

So, I am continuing to think/send positive thoughts to Tricia that she will get new lungs quickly and that the transplant will go successfully!

Hugs from Redwood City, Calif.,
Shari K.W.

P.S. One of my friends w/ CF has already celebrated her 1-year "lungversary" of her lung transplant, and she is doing fantastically! I wish the same thing for Tricia. :)

beckscat said...

Praying! Maybe they should call the new vent setting - Tricia's Setting! She inspired it!

Christy said...

I rarely comment, but read and pray for Tricia.

Anonymous said...

Since she cannot talk with the vent, can she still eat and drink to get nutrition?
Is Gwnyeth allowed to visit her mom?

Anonymous said...

Praying for your family.

Becky said...

Thank you for your frequent updates. I lost 'touch' when your were on Twitter and often wondered about Tricia's status. I am praying.

Anonymous said...

Much love to all of you. I am praying for new lungs quickly. Joanna Carter

Susan said...

That's great to know that she will remain on the list while on the vent. My 6 year old daughter has a trach. We use a touch screen communication device and it's really great. They are easy to use. There is software you can buy like ProLoQuo2Go or TouchChat HD. Since Tricia will only be on the vent temporarily you may not want to invest in a software but you might want to try the FREE app TapToTalk. I haven't tried it myself but it might have enough features to make life a little easier for you guys. https://itunes.apple.com/us/app/taptotalk/id367083194?mt=8 I'm so glad Tricia is more comfortable.

Dawn said...

Thankful to hear good news and praying that the miracles continue for you all.

Belva said...

Praying in Michigan!

Anonymous said...

Nate, Does Medicaid pay for the lung transplant or do you have to actually raise your own funds to pay for it?

Tiffany H said...

Wonderful update to read. Prayers for you all...

Christine said...

Such wonderful news! My little CF two-year-old has come up to me three times in the last few days, put her hand in mine said "Pway Twisha?" We are honoured to pray for you all, and so elated by this news.

Anonymous said...

Praying in Canada. God bless you, Tricia and Gwyneth, for being such incredible inspirations of faith! May God's glory prevail so that Tricia gets a beautiful set of donor lungs, and that you and Tricia and Gwyneth can prevail in your ministry of faith together! God knows His plan for your family, and He hears your prayers. Thank you for sharing your journey with us, in Jesus' name.

BLESSINGS!!!!! Michelle

CulyQFun said...

This is awesome news. Still praying for Tricia and for the donor family that will give her the lungs she needs.
Thanks for keeping us updated!

Anonymous said...

from the other side of the Atlantic.....prayers for grace, healing and peace of mind and heart

Tia Bennett said...

Hope is a good thing!
Praying for your sweet family from Indianapolis this morning.

Stacey Midgett said...

Thanks for update. Tricia and your family continue to be in my prayers.

Anonymous said...

Is it true if you don't have enough money to pay for the lung transplant that you have to wait longer on the list?

Anonymous said...

So happy to read the good news. I don't often comment, but I have kept up with your blog throughout the years. Tricia and I were pregnant at the same time. Sending much love to your sweet family.

CFHusband said...

"Is it true if you don't have enough money to pay for the lung transplant that you have to wait longer on the list?"

Not true, at least not a Duke. Duke will not list you unless you have proven that you are financially capable of transplant, either via insurance and/or other means.

Bekah Boo said...

praising the Lord and continuing to pray!!!

Nycole said...

You guys are in my prayers. You've have been an inspiration to me for many years!

My husband is working to be listed to a transplant as soon as possible. If you get a chance check out,

goteambrandon.com

We love you!

david said...

This was very beautiful.I loved it very much.Thanks for sharing it..






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david said...

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Anonymous said...

If anyone can spare some prayers...please send them to James who is a newlywed CFer also awaiting a second double lung transplant.
https://www.facebook.com/JamesQuestForLungs