Thursday, April 17, 2008

The Next Several Weeks

So, here's what the next several weeks should look like for us...

Tricia needs to meet four criteria to be discharged:

1) Walking at least 1 mile daily. She walked a world record 16 laps today, which equates to about 4700 feet, which equates to about 4/5 a mile.

2) No chest tubes. She had two more removed two days ago, and another removed today. She's got one big tube and two small tubes left...the big one should be removed in the next few days, and the smaller tubes will probably be removed on her last day.

3) Able to cough, especially cough up the secretions that she is currently needing the bronchoscopy/suctioning for. She is literally having to relearn how to cough, and because she was on the vent for 3 months, her muscles are gaining strength slowly.

4) No signs of infection or severe rejection. They won't let her go if she's just going to get sicker at home. So far, so good.

She is doing great with her breathing and talking. She talked on camera with Barbara yesterday for at least 25 minutes, and I got my first phone call from her in over 3 months the other day, which was super cool. She will keep her trach until sometime between being released from the hospital and going home. This will allow her to easily be bronched every week and be a safeguard for an emergency.

Her walks are going great. She walked twice today, 6 laps in the morning and 10 laps this afternoon. She only stopped once for a breather on our walk in the afternoon. She is still walking with the Swedish walker, but mostly just to carry her chest tubes. She has been asking for less pain meds the past few days.

So, we're hoping that Tricia might be discharged by Wednesday of next week.

Lots of people are coming by to talk with us. A pharmacist came by to explain all of the new drugs she'll be on. The coordinator to teach us about lots of different transplant care. The patient resource manager to discuss a few things. I'll talk more about some of this stuff later.

Once Tricia is discharged, the first thing we need to do is go pick up her drugs and equipment. She'll be referred to the Center for Living again to complete another 24 days of PT, and then we can finally go home. It won't take 24 days, though, because she'll also have lots of clinic visits and other appointments to make that will take away days from PT. She'll also need to have a stomach wrap (very common post TX), but we haven't been told when or for how long.

Gwyneth needs to meet four criteria to be discharged:

1) Breathing on her own. She's had this one down for several weeks.

2) Weighing in at no less than 2 kilos, or 2000 grams, or 4lbs 6oz. She seems to have plateaued at 1500 grams for the past week, but we're hoping she'll hit 2000 in the next 3-4 weeks.

3) Eating completely from the bottle and none from the feeding tube (that tube in her nose). She is currently eating from about half a bottle about 3-4 times a day (she is fed 8 times a day). This will come as she grows stronger and bigger.

4) No other major issues. So far, so good.

So, we're hoping that Gwyneth will be on her way out within the next month as well.

Anyway, all of that means that we're hoping we could be home close to the first of June.

Thanks.

Nate

97 comments:

jamie said...

OH MY GOSH!! Maybe Wed of nest week????????? WOW I'll be prayin real hard!! And it would b great if both girls could leave together. Have to go read again to see if that is a possibility> WOOT!! YOU GO TRICIA!!!
God Bless you all!!
Jamie in Texas

Megan & Company said...

June is FABULOUS for us. :)

Hmm.. we'll have to have a big family party sometime in June!! ;)

All Boys for Me said...

SO very happy that your girls are doing so well! Continuing to pray for healing and as easy a transition to home as possible!!

HaileFamily said...

Wow, lots to pray over! God is good...can't wait to continue watching His provision for your family! I hope and pray that both girls will be released simultaeously! (Did I spell that right?)
I don't think I realized how much after care there was concerning TX...

kidsworld said...

I am sooooo thrilled at all of the 'hopes'! Can't wait to read about the family party that Megan is speaking of...can we come??? ha ha! I may just have to wait until the OBX Great Strides walk to see these two miracles first hand!!! Thank you, Nate, for the update and again for including all of us in your lives!

refreshing in ohio

grey like snuffie said...

wow, I just KNOW that God has the perfect timing for all things. Thanks for the update, will continue praying.

Kori said...

I am so EXCITED for ya'll. Wednesday is less than a week away. Way to go Tricia. And sweet Gwyneth is coming right along. Praise God for he is good. Can't wait to hear more.

Candi said...

Wow---I was shocked to read Wednesday of next week!! I'm praying that happens. I'm sure Tricia is anxious to get out of that hospital!!

Shannon said...

It totally blows me away that she even could possibly be dischared next week. Tricia, you are one tough Mama!!! Praying for a dream timeline for your girls.

Many Blessings,

Shannon (in Germany)

Kitchen Scrapbook said...

This is wonderful! A post about being discharged! I'll pray that everything keeps going well and the girls meet their criteria ASAP! PTL!!!

Shelley said...

The 1st of June is just around the corner! In no time your whole family will be relaxing at home and what a day that will be! I'll keep praying for all of you and that that day comes soon!
Shelley in IA

The Curtis Crew said...

That would be awesome! You guys have come such a long way. Tricia, you're an amazing woman. You have worked so hard to get to this point. I can't wait to read the posts and see the videos and pics from home...lots of beach pictures in the near future, right?

Have a great afternoon!

Kelly said...

Thanks for all the specifics- it certainly helps us pray! Much love to you all!

The Rosetto's said...

what better than to be home for a summer on the beach!

Emily said...

Wow. That is awesome. It is so nice to be hopeful and have a goal to shoot for. I'll be praying specifically for the Lawrenson Party of 3 to be back on the beaches of OBX in June! May He be glorified. :)

Nan said...

We are hoping and praying with all three of you, and all of your families!

Momof2bz said...

Wow! I check the blog daily and I knew you girls were looking great but wow! I am actually in tears thinking that you will all have a homecoming soon! I'll continue praying that God keeps smiling on you. I say it all the time but you are truly amazing and inspiring. Your faith is awesome! Go Team Lawrenson!

3D said...

That is such heartwarming news! Amazing how life can change and for the good!

Keep smilin!

vandyformeplease said...

WOW!!! That is so fast! That is amazing! I hope she gets out that soon! That would be great!!! Hopefully little Gwyneth will be soon to follow! Much prayers for you both!!!

Annie-Nashville

Kerry said...

It puts the biggest smile on my face to see the plans for the return home :-) Tricia- the sand will be between your toes soon enough! Keep up the great work! Prayers from CT, Kerry

WWW.ClayCleanse.Com said...

So wonderful, I'm so thrilled for you. Prayers for Gwyneth to gain weight.

Destini said...

Meka the pug will be so excited!!
I truly stand in awe of our Lord...it is amazing how he has held your family in the palm of his hand and shielded you so. I am so happy to hear that Tricia may be discharged soon. Just in time for some great weather!

Praying that the girls continue to progress!

Adrienne said...

My jaw dropped when you said next Wednesday for Tricia... YOU GO GIRL!

Now I'm going to get busy praying that Miss White Rose gets the memo. It would be awesome to see you guys home by Father's Day!

jmgarnet76 said...

Awesome
Amazing
Exceptional
Extraordinary
Remarkable
Magnificent
Superb

Those are just a few of the words that come to mind to describe a few ..

They describe Tricia and Gwyneth ..

AND OUR GOD IS AN AWESOME GOD, an extraordinary God, a remarkable God, and all those other words too and so many more.

Ed, Jamie, Christian and Benjamin said...

Wow! That's great! We will pray for each of them to meet the next milestones soon!!! I do have a question. I know that Tricia got the transplant and that it does not chang the CF but will these lungs remain strong or will they deteriate over time from the CF? I really am not trying to be rude or anything I am just asking out of not having the knowledge of how all this works.

Susan said...

Oh my GOSH!!! What wonderful news. Praying that all continues to go well

debbale said...

Wow this is such great news. It is hard to believe Tricia will get discharged so soon. What a miracle this is. I guess mommy will win who will get home first.:)

Marsmile said...

WOW! I'm so excited and happy for both Tricia and Gwyn! That's gotta be almost like heaven when you all get out of the hospital and go home! Sounds like both girls are transitioning well. I pray and truly wish all the best for the both of them!

A summer by/on the beach... ahh... (of course, with lots of protection--sunblock, etc.--I'm sure you are already aware of this as I read a news article a few weeks ago about transplant patients' skin being more sensitive to the sun rays due to all the anti-rejection meds). Still that scene would be so relaxing and I look forward to pictures of you three (perhaps 4 if with Meka) by the ocean! ;-)

Take care,
Marissa :-)

Karen said...

That's awesome! Can't wait to hear more great news! I'll be praying along those lines for you... God has been so faithful! God bless all of you!

cmziall said...

This is awesome news! Thanks be to God for all the answered prayers! Way to go Tricia! I guess you guys will be living where Nate has been living until Gwyneth gets discharged. We will continue to pray for your family.

God Bless!
Michelle in MO

mom2izzyandallen said...

We will pray to this end as well.

JonesFam4 said...

will be praying, especially as your responsibility level will ramp up here with the after TX care at home. You'll just have less blogging time :) What a GREAT reason to not be able to update: your girls HOME.

Katy said...

Nate,
This is the first time I have left a comment but have been reading and lurking for a while. One of our former youth kids from church, 21, was in an accident last week. She died the next day on life support. Her family donated some of her organs. Not sure which ones, but she was able to save 5 lives with her donation. I have the heart sticker on my license. Life is just a vapor. I would gladly give my organs to help someone else to live. Thank you for your story. The end is near when you and your girls can all be home. God bless you all.

april said...

h wow! next week!?!?! awesome news! you must be ecstatic!!!

Melody said...

Amazing!

April said...

Thanks for giving us specific items to pray for!!

Brad & Karen said...

Yeah Team Tricia/Nate/Gwyneth!
Such an encouraging update!!
My girls have asked if when you go home if you will still do you blog! They are in love with your girls!
Karen et al
Vancouver, BC
Canada

walkingbyfaith said...

I'm excited to hear how well the girls are doing and that Tricia may be released next week! I'll be praying they both meet the necessary criteria. :)

Blessings!

Jessica mommy to Alex/ RTS said...

Wonderful, so close to be home together!!!! Wow!

April B said...

Just wanted to drop in and say I keep myself current on your posts although I do not know you or your family. I am approaching my 4 year post double lung tx anniversary and feel amazing. But reading about your daughter has been so inspiring to me. I let go of the deep desire to give birth to my own children years ago because of the state of my CF lungs. And now I feel I don't want to risk my new lungs. So I look forward to adopting...but to read about Gwyneth Rose and all Tricia (and you) went through to have her, truly brings on a sense of triumph. I respect all you have done to bring your baby girl into this world.
It's also good to hear Tricia is going to have the Nissen Fundiplication surgery. Proudly, I was transplanted at Columbia and also had my tummy wrap there. My PFT's dipped a little to the low 90's but once I had the tummy thing, they went back up to the high end!
Sorry for rattling on...praying for all of you!

Kupiec Baby Blog said...

Wow, that is amazing that Tricia may possibly be able to be discharged next week!!! And, that both your girls may be home in June! Our God is great.

Stacemoe said...

What an answer to prayer that your girls are doing so well....Continuing to pray for strength for both of them. Thanks for the updates.

ckuretich said...

I like to see this kind of thing - here are the goals, what needs to be met, what is negotiable, where are we at so far. This is good. It probably helped you TOO to write this down, I know it always did that for me.

I will be praying for these specific things to happen!!! Tricia is doing SO great, even if she has a setback or two she is still a miracle, that is for sure. Stay STRONG and know we're thinking of you guys ever day.

Laurie said...

Praying for all of these things to fall into place for your girls. God has been doing exceedingly and abundantly more than amazing my socks off with your story. A true miracle Nate with three of the most amazing people I have ever met. May His healing touch continue to be all over them in the days ahead. June, home, three of you? Absolutely doable with the God of this miracle and I am full of hope for you. Bless you guys.

Laurie in Ca.

Busy Momma said...

amazing! Your story has touched my heart in so many ways and I can't wait until you can be writing all your updates from at home with your girls.

Patty said...

Wow oh wow!!! The power of prayer is wonderful. I am so happy for you all, and continuing to pray that everything continues to go well.

The wrap is what they are considering for Jerry for his hole in his esophagus after his hospitalization earlier this week.

Shari said...

WOW !! How amazing it is for all Tricia has been thru to possibly go home that soon! And Gwyneth--growing and filling out quite well. They both look great--what an amazing time this has been for your family....and so blessed a time too!!

continued prayers,
Shari NC

LindsayS said...

Wow! What great progress! I'm so glad to hear things are looking good. I know it feels like a lifetime for you, but just a few weeks ago, you were waiting. Look at your girls now! Amazing!!

Still praying and keeping you all in my thoughts!

LindsayS

Pete, Alison and Charlie said...

That's brilliant news - Tricia discharged very soon, and HOME before too long! I bet you both can't wait to get back home again... but this time with Gwyneth and a new pair of lungs! Thinking of you all so much. X

Jane-Jane said...

praying for June 1st at the OBX!!! And fyi...I prayed for a friend to carry her triplets till June 1st, they made it 4 days longer, so maybe you will be home 4 days before June 1st!!!

YEAH GOD!!!

Breath on girls! And eat too, you both need your pounds and strength! :)

MamaBear said...

To God be the glory, great things He hath done!

The Lenda's said...

Wow so fun to see the miracle keep getting better each day for you all. I can't wait until the day we see pictures of three of you at home together. By the way I am assuming home will be the "hotel" near the hospital for awhile or will you be able to return to Nagshead after Tricia's PT?
Praying in Pa
Rachel

Donna said...

Excellent post, Nate! It answered many of the questions that were floating around in my mind.

Very exciting! Thanks for the update... Praise God!

Erin said...

Wow! That is completely amazing! Tricia is doing amazing. It is truly breathtaking to 'watch' her recover. And that precious girl of yours will be at home before you even know it!!

Rich and Lauren said...

That would be so AMAZING!!!!! We're so happy for you guys!

Mary said...

God is so good. I'm still praying for you all....here's to life back at HOME!! Woohooo

Mary
Florida

Happy_Housewife said...

Praise God. What great news!

Jer & Ro said...

This is so exciting, Tricia you are amazing! We pray that both of you will be discharged and home in a couple months. I had a lobectomy done last Feb. and while I had a speedy recovery I want to pass on some wisdom, it's good to cut back on the pain meds but stay on them! they help you a lot more than you realize and you will be able to recover a lot faster if you stay on them, just don't try and get off too fast, it took me months.

Marjolein said...

This sounds great :)
Crossing my fingers everything will be ok!

X

Jennifer said...

WOW!!! Wednesday! That is great...I guess Tricia going home before Gwyneth would give some extra time to build up strength...but then I'm sure Tricia won't want to leave Gwyneth at the hospital.

I pray for all eight goals and the best for all of you.

Keep up the hard work!!!!!!

tshaw said...

What great news!!! Congratulations! Praise be to God!!

Michelle said...

Nate and Tricia,

You don't know me, but I've been following your blog for several weeks now. I'm so excited to see real talks of the girls going home. They both look so great! Gwyneth is an absolute doll! I wish I could reach through my computer and pinch those adorable cheeks!

Your family is in my prayers always. Keep up the great progress! God is doing amazing things in your lives!

Michelle

Kristen Hamilton said...

That is beyond exciting to think of all of you home together as a family by summer!
I don't know if Abby Amos has contacted you Tricia, but I'm sure she would really appreciate your prayers for her sister in law, Tricia. She's due in 6 weeks with their first child and had to be induced this morning b/c of dangerously high BP/protein levels. The baby is under 5 pounds, but does not seem to be in distress at this point. Tricia is having a very hard time with the pitocin and magnesium combination and of course being in labor. I thought you would want to know. Praying for you guys!

Carolyn said...

Wow!! Light beaming at the end of the tunnel!!! Congratulations!! I am so happy for your family!!

Laurie Johansen said...

Still praying hard for YOUR GIRLS to come home. I can only Imagine what kind of homecoming that will be.

May God continue to richly bless your family.

Laurie Johansen

~j~ said...

Wow, that was such a hopeful and wonderful post... of course we will continue to pray.
Your girls are both incredibly strong Nate, how proud you must be.
j

Amy said...

What exciting news! I'll be praying that both your girls continue to gain strength... and that you get to take them home together.

Beebe said...

Continued prayers for your family

Joanna (Mof2) said...

That is wonderful! I am so happy for ya'll. The three of you have come such a long way. Everytime I read your story, it reminds me of the miracles that God performs! June, awesome!

Emily said...

That is amazing! We will continue to pray for you all as you strive to meet those milestones. God is truly good!

Emily said...

That is amazing! We will continue to pray for you all as you strive to meet those milestones. God is truly good!

UKNat said...

WOW! Next Wednesday! I had no idea it could possibly be so soon after the transplant. I am amazed at both of your girls! Still praying. Natalie

twin power mommy said...

that is VERY exciting, guys. I can't wait to see pictures of tricia outside the hospital!

marcia said...

While it must seem that you have lived about three lifetimes in the last three-four months, do you sometimes have to pinch yourself to be sure this is real, when you start writing things like this post? Wow! Looks like this summer is going to be even more beautiful than most on the OBX!! Can't stop smiling for you! :):):)

Jen in Al said...

that is incredible thank you so much for the update! continuing to pray...jen in al

Renee said...

Prayer are going up daily for your family.

mjdav said...

So much to look forward to!

Douglas said...

Praise the Lord! What an awesome God we serve. We are so excited for you guys and we will continue to bring you before the Lord as you walk through this process together. Again, thank you so much for allowing us to be a part of and witness, in a small way, this journey that you have gone through.

Danielle Davis

Kristina said...

Some specific prayer requests, It is amazing to think that she may be ready next Wed!

Praise the Lord.

Cori said...

wow! SO much great news! So happy for all of you!

My daughter has a stomach wrap done and it's been great for her!!

Praying without ceasing!

Q's NEWS said...

I hope so too :)

Prayerfully in WV,
Susan

Jennifer said...

Your story continues to amaze me. I still pray for all of you daily here in Michigan.

Marge Sexton said...

Maybe next Wednesday....WOW!!!! This is such encouraging news! Can't you just imagine the day that you and Tricia can stroll Gwyneth throught the park on a sunny summers day! God is Good!

Kate said...

I can't believe Tricia, Gwyneth and even you will be able to go home soon. I'm sure you are all more than ready. I'm so very excited for you all!

PammyT said...

that's wonderful! i'm so glad that gwyneth and tricia are doing so well! what wonderful news!

PammyT said...

that's wonderful! i'm so glad that gwyneth and tricia are doing so well! what wonderful news!

Heidi said...

WOW!! good girl Tricia! June is just in time for summer which is great for Tricia and baby because it's not cold and flu season.

GOOD JOB GIRLS!

TNKerry said...

One week!!! Amazing progress!!!! So good to hear.

chattinim said...

Wow, they sure have to weigh a lot to be discharged from the NICU at Duke. Two of my triplets were discharged weighing just under 4 lbs. I'm not sure my third triplet weighed that much either at discharge.

That is wonderful news about Tricia. I hope your family is all out of the hospital very soon.

Somer Love said...

I am so happy things are going smoothly for Tricia Wed of next week is amazing. I was wondering if you could ask her docs a question for me I have heard after transplant you can only have certain brands of bottled water.... Do the docs know which brands they are? Or does it not matter?
YOu guys are in my thoughts and prayers! A mile is so amazing WOW!!! Congrats on all your accomplishments there are so many more to come.

Scott said...

I am about choked up just thinking about your guys being in the OBX by June, how sweet that will be! What a great post!

buffiecar said...

Wow that will be so wonderful to be discharged! When she's trying to cough up secretions, they aren't still the thick secretions she had before right? So when she figures out how to cough again they'll come right up? I sure hope so. Great news!

Candy said...

Hoping and praying right along with everyone else.

Aunt Donna said...

Go Tricia!!! you are such a strong woman. Love you.

Carissa said...

Just wanted to say, I had the Nissen Fundoplication a few years ago for my GERD. It was not a fun surgery or recovery (although it is nothing compared to what Tricia has been through), but it made all the difference in the world for me as far as not having that uncomfortable burning all the time. I am definitely glad I opted for that over staying on acid reflux drugs for the rest of my life!

swallowingamoose said...

Really awesome news Nate! I think all of us reading can say "WOW" things have really flown by. Especially since Tricia could already be leaving the hospital! Seems like just yesterday we got hooked on your blog an Tricia was "sleeping" then. God has been so faithful! I have really enjoyed all your writing, photo's, sharing, inspiration, and realness. It's so great to see the goodness of God unfolding before our very eyes each day. How could He resist as you captivated us- the World- with your honesty and boldness. God has used you all and gotten great glory. An we have been so touched. Maybe one day miss gywneth will be writing to us all on the blog. Love from our home to you three!

Sheryl said...

That is such great news.. But kinda hopeful that you will continue as days and months go by to let us know how Gwyneth and Tricia are doing. this has been the best story ever... God Bless You All Please tell Tricia to keep up the good work...