Friday, April 25, 2008

Back In The Saddle Again...

Tricia began her Physical Therapy at the Center For Living yesterday! 1 day down, 22 to go!

Tricia must complete a minimum of 23 days of PT before she will be released to go home to the OBX.

She also has clinic appointments about once a week, including some other appointments, all of which may take days away from PT, so we'll probably be here for longer than the 4+ weeks that it would normally take to complete the PT.

She will go to the CFL Mon-Fri for about 4 hours every day. I'll find fun and constructive things to do around Durham while she's working out. Check out posts from last September and/or This Post for an idea of what our schedule is like right now. We're trying to visit Gwyneth a few times a day together as well.

The pain is still there, but it is getting less and less. She never experienced the back pain that most transplant patients complain of (due to the surgery itself), but her transplant incision and chest tube incisions are still hurting her. She is also still have pain and numbness in her right arm. She is finally able to sleep a little on her sides, and she has slept very well (comparatively) her first three nights home.

Tricia still has her trach. She'll probably have it removed sometime within the next few weeks. She is still relearning how to cough, and I am able to suction her at home if needed, although I have only needed to do that once so far. And, her voice is getting a little stronger.

She is still not allowed to eat or drink anything but thick liquids. She is "eating" mostly with her feeding tube. Tricia's goal weight has been 120 for the past several years. After the c-section, her weight had dropped to nearly 110, just before the transplant surgery, it had risen to around 124, and post-transplant surgery it had dropped again to 114. She is gaining slowly but surely now, and we've been told that it should be much easier for her to gain and maintain a healthy weight as long as her new lungs are functioning well.

It is amazing to watch the timing of everything continue to work so well for us. Gwyneth is doing so well that we are able to spend the time needed focusing on Tricia getting stronger and healthier so that we can both be ready for Gwyneth when she is discharged (hopefully within the next month). There is no way I would be able to handle, on my own, both Tricia and Gwyneth at home together right now.

Finally, somebody asked me if I was going to rename my blog because I am not "a CF husband anymore"...as I've explained before, Tricia still has CF. CF is much more than a lung disease, affecting literally every part of her body that produces any kind of secretions. Her new lungs are the only part of her that no longer has CF. Her pancreas is still deficient, meaning she still must take her enzymes. Her sweat is still salty, etc. etc.

Tricia will always have CF, and I will always be a CF Husband.

Thanks!

Nate

46 comments:

Heidi said...

GREAT NEWS!!!

Blessings From Above said...

Thanks for the updates! I'm so glad everything is working our for you all. GOD IS GREAT!

april said...

sounds like evrything is going great! heal fast Tricia!

Jen said...

Your family is an inspiration and I thank you for keeping us all up to date on your lives.

happydaisies143 said...

So maybe in between a therapy session, you two might find the time to continue telling us your love story...YOU'VE LEFT US HANGING for a long time now!!! :) I want to hear more of Tricia's side of the story too!!!

The prayers are continuing. I hope Tricia's therapy is very helpful and that you three will be home very soon!

-Lisa Collinsworth

The Browns said...

I agree Im waiting to hear more of the love story :) This is great news about EVERYTHING!!!

Paul and Christy said...

I know that your schedule is very busy. I am just so happy that you all can all be together. This season in your life is drawing to an end and the next will start soon. It seems like it took forever in one way and it was quick in another. Watching God work is always such a learning experience. I am praying that the pain goes away really quick. BIG HUGS to one of my favorite OVERCOMING families.
Christy

Momofgirls said...

Yeah..... For Better Days! We will keep praying for each day to get better, more fun, easier and more relaxed! Thanks for the blessings of the updates!

Marsmile said...

Sounds lovely! I'm sure in no time Tricia will be completely healed from the surgery and strong enough to return home to the OBX.

All these activities that fill your days definitely beat the hospital boredom!

Take care and get enough rest the both of you,
Marissa :-)

Katie said...

Keep up the great work Tricia!! Your baby girl will be home before you know it Nate. I'm praying for a great month ahead for the 3 of you!
-Katie L

Marcie said...

Keep up the good work! Oh, and I glad you are not going to change your header.

Kim... said...

HEY THE NEW VIDEO IS UP ON ABC 11!! I randomly checked the website today and saw it...amazing!!!
WAY TO GO TRICIA!!
Love,
Kim
Wilmington, NC

happydaisies143 said...

Yep, it was March 5th last time Tricia told her side of the love story...but I think she's been a little busy since then! ;) Thank you again for all the updates! God has done AMAZING things...again and again and again and every day I come to your site thinking, "Let's see what cool thing God did today through the lives of Nate, Tricia, and Baby Gwyneth". I wonder how many of accepted Christ or have recommitted themselves to Christ through your story... A LOT I'm sure!!!

-Lisa Collinsworth

Kim... said...

P.S.
Here's the link to the video:

http://abclocal.go.com/wtvd/story?section=news/local&id=6103458

Agkirsch said...

Oh yes Trish , you are still our "salty girl" but with lovely rosy blush and sweet sounding air moving freely in and out of those new lungs.
All more than we could ever have imagined ; such JOY!! Thanks, dear Nate, for such competent care of our girl. To God be the glory great things he hath done!Love ya

Tammy C said...

Just remember to get sleep for yourself!You are one busy husband/father.Keep up the wonderful work with your lovely girls.

Jessica mommy to Alex/ RTS said...

Love the updates.
Hope the PT goes well, and you can go home soon.

WWW.ClayCleanse.Com said...

Great update, I'm sure they will give you plenty of notice for Gwyneth's discharge. Don't worry, it will all work out when they're both home, I'm sure your family will rally to help.

amy smith said...

praying for restful sleep and girls gaining weight...

Angela R. said...

So happy to hear everything is going well for all 3 of you! Tricia keep up the great work, you are so strong. Looking forward to hearing more good news!! Still praying constantly for you all!!

God Bless!
-Angela

Lady Eli said...

You shouldn't sell yourself short. Especially after all you have endured. You can handle Tricia and Gwyneth together it just wouldn't be easy. Congrats to Tricia for getting better! One step down about a zillion more. Thinking of you and praying for you guys often.

Kristi said...

Thinking of you all often and continuing to remember you in my prayers!

Kim said...

Thanks for the update! Praying for the 3 of you as you continue your path home!
Kim

jheatherdefoor said...

Thank you for the update during your busy schedule. It's always great to hear good news! I am still amazed at the ing being so perfect for you and Tricia. Praise the Lord for that!! I pray that all the new meds and new transitions go well for ya'll!

Caroline said...

How wonderful that things are going so well - God is really blessing and helping you. I can imagine that having JUST the two of you together again - no nurse, medical staff etc, must be soooooooo wonderful and sweet. Praying that Tricia gets her strength up ready for that cutie-pie of yours to come home with you soon.

Love and prayers.
xxx

Jane-Jane said...

God's timing is tough to walk, but always the best when we look back at the big picture.

Praise God for His healing hand. Yes, you have had GREAT medical care there at Duke, but He is ultimately the Great Physician. I praise Him for granting Tricia's Secret Prayer. We serve an awesome God.

jamie said...

Nate, I do appreciate you taking the time to let us "stalkers" or "addicts" as Rick called us :), know how everything is going. I am so happy for y'all. Everything seems to be going great. It just blows me away to think back a mere 3 weeks ago, and compare that to today. WHEW. Incredible. God gave you some great medical people to facilitate his miracles.
Have some fun hanging out, waiting on Tricia. I'm glad it's spring now and the weather is nice for "hangin".
Give Tricia and Gwyneth hugs for us all. Save some for yourself too!
God Bless you all
Jamie in Texas

Deb said...

Wow it sounds like things are going wonderfully! I'm glad you get to get used to taking care of Tricia again before you have to worry about taking care of a preemie at home too. I've been praying and will keep on doing it- that you guys get enough rest and that everything goes smoothly from here on out!
Gwyneth is looking so beautiful in the last pics you put up, too!

Rebecca said...

Thanks for keeping us posted. It helps to know how your days go. Maybe that sounds strange, but it does.

Hugs to you all...

Christy said...

Awesome news Nate! Things seem to be progressing well! I'm thankful Tricia has a feeding tube. It was truly a lifesaver for me, especially after the stomach wrap. I would love to see pics of Tricia at the CFL if you get a chance in the next several weeks to post them. It is so awesome tracking her progress through your blog, and please know how much we appreciate your taking the time to update us when you can. Everyone knows how full your life is right now!

Busy Momma said...

so happy things are going well. it's still amazing to me that medical science figured that you can take a body part from someone and give it to another to give them a chance at life. I'm so glad Tricia was given that chance and is thriving.

kaylee114 said...

That is so amazing that Tricia has begun her PT! I agree with you Nate, what a blessing it is that Gwyn has not been discharged yet while Tricia is still healing and recovering! But, if that does happen, at least you have Tricia's mom there full time to take care of the baby for you. Yay for grandmas!

kaylee114 said...

Oh I just was wondering, is Tricia hungry all the time since she cannot eat by mouth? Or is she used to just eating through her tube and that actually 'fills' her up? Maybe she can have a really thick milkshake? That will also put on the pounds!

Tumbleweed said...

Nate- Remember to take care of yourself, and do some things for you. You won't be able to help Tricia and Gywenth, if you run yourself ragged. Great and inspiring news on Tricia and Gywenth!

Michelle said...

To God be the Glory and your sweet family has given Him that glory over and over...ROCK ON!!!!

Lockwoods said...

Just saw a couple other comments mentioning just what I'd been thinking...when you have time, we'd love to hear more of your sweet love story! :)
We just watched the video...Tricia looks amazing! Your faces radiate so much love and joy even in the midst of all you've been through! I know it is the Lord! He is so faithful! Praying Daily!!!
love,
The Lockwoods

Pauline said...

You are a TERRIFIC husband .. those girls are LUCKY ... as are you ... It is awesome to hear that success keep coming!

MPT0428 said...

Maybe you should you change your blog to be Confessions of a (blessed) CF Husband. I've been totally amazed at all God has done in your lives these last few weeks. He CAN do the impossible. I have rejoiced with you with everything He has done so far and pray for his continued blessings!

Meredith

Alicia said...

Until the day, Lord willing, that a cure is found for our CF loved ones!

Amanda Is Charmed said...

I am so very happy all is going well
God's love is an amazing thing

Scott said...

Sounds like a busy stretch. I too have been pondering the timing of it all. I really see you all heading to the OBX together!

mjdav said...

And a very good CF husband at that!

Shea said...

I do have a question from a medical standpoint. Though Tricia's lungs no longer have cf, will the cf in her body start to affect her new lungs over time? I have tried to research this but keep coming up blank.Your girls are doing so wonderful! I am praying for them!

Pauline said...

Your story is incredible...one so filled with love. I am so touched with the srength of your entire family...the three of you and your extended family! Your faith is amazing! I came to your blog through my daughter's blog. She has a link to it. May God continue to bless you and may your love and faith be an example to all who read this. God Bless

Tracey said...

What a difference a month makes! I was bawling as I read all that I had missed while having some health problems of my own. How wonderful. My first clue was when I saw a pic. of Tricia sitting outside in her wheelchair!!!

I am so excited for the 3 of you and can't believe how big Gwyneth has gotten. Congratulations!! I will keep praying and have already paused and thanked God for His AWESOME working in your beautiful family. MY family has been touched by your blogs.

Again, thank you for sharing so much.

Courtney said...

I've never posted so I have to say:
1) thanks for keeping this blog - I've never met you but your story is so compelling, 2)Gwyneth really looks like you and I love her red hair and 3)why do CFers have salty sweat? doesn't everyone have salty sweat?

Thanks and God bless you!