Monday, April 14, 2008

The Past Two Weeks

I'll try to make this as informative and simple as possible.

A lot has taken place since the surgery. The surgery, as described by Dr. Lin (who performed the operation) was one of the most difficult CF transplants he has ever seen. Tricia was extremely sick, and her lungs were so badly deteriorated that they literally had to be scraped out of her body.

Tricia has experienced a lot of pain and discomfort. In fact, it's easy to say, at this point, that she was feeling healthier before the surgery (sans the collapsed lung) than she has yet to feel after the surgery. She came out of surgery with 8 tubes (6 "chest tubes" and 2 smaller drainage tubes), an arterial line (left wrist) and central line (neck), and over 100 staples. She was given an epidural for pain meds, and for the first several days had sometimes up to four different IV meds pouring into her body at the same time.

We (our parents and I) were able to see Tricia just a few hours after the surgery ended while she was still sedated. She was awake shortly after, and when I went to see her a second time that afternoon, she was sitting up and alert.

Tricia dealt with the short term memory loss for about the first 5-7 days...each day it got a little better. The first day she would literally forget everything within about 1-2 minutes, by the afternoon of day 4 she began remembering a things from that morning, and by day 7 she was able to remember most of day 6. Anesthesia and other drugs affect everyone differently...some can remember everything except outside of sedation, while others, like Tricia, may never remember anything of the several days surrounding the surgery. She is still having a hard time remembering anything from the day leading up to the surgery.

Because of the short-term memory loss, Tricia constantly asked the same questions and made the same statements over and over the first few days. Her chest felt very tight. A "rumbling" feeling from a leak around one of the chest tubes felt like the secretions that she was used to in her old lungs, and she constantly asked to be suctioned, and we constantly had to explain that she didn't need to be. The incisions around the chest tubes and the incision that stretches from under one arm across her chest to under the other arm continue to be very painful.

On day 2 she had the 2 hard plastic chest tubes removed (the others are flexible rubber), her G tube replaced by a G/J tube, and the pic line placed. On day 7 she had the epidural removed.

Her breathing was and still is very difficult. The chest tubes take up some space in her chest cavity, and the many, still-healing incisions make it hard to take a deep breath without being in pain. She has no sensation in her new lungs, yet, and, of course, everything is cut up and rearranged and replaced, so it's very hard for her to really tell how deeply and fully she is able to breathe, which tends to create some anxiety. Her O2 and CO2 sats have been good, but not great.

As was explained to us before the transplant, because Tricia was on a vent for so long and transplanted on a vent, her recovery time could be expected to be longer. Normally, they aim to have most post-surgery TX patients off the vent in 48 hours and out of ICU within 4-5 days. Duke has performed around 700 TX surgeries, and only 2% (about 14 people) have been gone into surgery on a vent like Tricia.

She finally began getting some substantial sleep on day 6, and it showed on day 7 as it was the first day that Tricia really began to act more like herself. The first week, she was almost completely focused on herself (understandably so, as your body and mind force you to be self-centered when you're in a sever medical condition). Day 7, however, she began to become more talkative, smile and laugh more and show more interest in what was going on outside of her ICU room, which was a huge turning point for her and for me.

The first week, especially, was extremely difficult for me. I won't say much, as we love Duke and are always thankful for the incredible care we receive, but, added to the emotional and mental stress of the surgery and recovery as well as the inability to be with Tricia 24/7 (which is stressful for both of us) were some other issues that were finally resolved after several days.

I did take advantage (as did Agnes) of the opportunity to sleep in the hotel beds for several nights in a row, and once the issues were resolved, and then more one Tricia began to return to her usual self, and then especially when she was moved from the ICU, we were all feeling much more relaxed and secure. As you can imagine, the past few weeks have also been incredibly difficult for our families.

Tricia has been walking around 2000 feet the past several days, and, for the first time since I walked her into the hospital in December, I was able to walk with her yesterday by myself without any nurses or RTs tagging along. She is becoming more mobile as she is now free of most of the chest tubes and is spending less time hooked to IV meds. We were able to visit Gwyneth together again yesterday, and hope to go again later today. Although her recovery has been slow, and she is still having a hard time breathing and is still receiving lots of pain meds, her medical team remains very optimistic that she'll be discharged sooner rather than later, which is keeping us hopeful in the difficult moments.

That's all for now. Please, understand that this is just a very simple, very surface picture of what the past few weeks have been like for us. There is so much more that has and is going on that I cannot share with you. Hopefully, this post gives you an honest but censored idea of what is going on. I'll share more soon about what to expect in the next few weeks and months. We're just incredibly thankful to God for getting us this far, and we're praying that He'll complete this part of our journey with a trip home soon.

Thanks!

Nate

PS. I'm having a hard time uploading pics from Tricia's room, but I'll try to get some up ASAP.

109 comments:

Stefanie said...

Thank you for the update. You are all in my prayers and thoughts.
God Bless
Stefanie

purejoy said...

thank you, nate, for your transparentness (is that a word) over the past months. . . we will be praying for rest, recovery, peace, breathing, co levels, and finally, an opportunity for you to gather your girls in your arms in your very own home and ALL breathe a sigh of contendedness. may God richly, richly bless you!
praying, praying, praying (and rejoicing over the story He has given you thus far)
kimberly

Brooks Family said...

Thank you, for taking the time to write that. Our prayers continue to be with you all, the the donor.

Heather said...

God bless you, Tricia, and your whole family. I hope the coming days and weeks are easier on all of you physically and emotionally.

Unknown said...

thanks for sharing all that Nate. Tricia and you and your whole family are so strong.

Anxious AF said...

Glad to have an update. Still praying.

Elena said...

I love that you keep such a great record of events for your wife. I know that I would love to go back and read all the happenings that I couldn't remember if it we me in her shoes. You are an amazing husband and friend and father. Thank you for sharing your lives with us.

Anonymous said...

Nate - thank you for sharing. I keep reminding myself Tric just gave birth as well!

You glorify God and we pray for you all.

Kim

Rebecca (Ramblings by Reba) said...

Nate, thank you for the update. As you know, you don't HAVE to share anything. The fact that you share so MUCH is a blessing to us. We hope that, on the whole, it is to you and Tricia, too.

I'm still praying.

Love and hugs to you, Tricia, and Gwyneth.

Rebecca

Kim said...

Nate - thanks for the update!! We continue to pray for you and your family!!

:-)Kim

Mandy said...

As always, thank you for sharing, Nate. Still praying for all daily. Take care of yourself and your precious family!

Kori said...

Thanks for the update. We conitinue to keep you guys lifted up in prayer. Serving regardless, Kori

Patty Honeycutt said...

The amount of private information you share is incredible. You should never feel apologetic about what you don't share. We appreciate hearing about all three of you and even your extended family. I have prayed for you all so much that it seems as if I know you, when I really know that I don't. I do know that we are in the family of God together and it is such a privilege to pray for you. Continue to take care of yourself as well as you can. Share with us what you feel led to share, but don't feel badly about anything you don't share. We need to remember that this is your lives and not a reality show. I can not imagine how hard your existence is right now, and I pray really that I never will. But I do promise to intercede for you all every time that the Holy Spirit brings you to my mind. Which seems to be several times a day. God bless you!

Anonymous said...

Thank you so much for sharing a tidbit of how things have been going for you all. I know I get so caught up in all the good stuff sometimes, that I tend to "forget" how difficult everything is. Thank you for reminding me of all I need to be specifically praying for. Continuing to praise God and share your story with others to join in praying. Thinking of and praying for you constantly. Love you three so much!
God's love and peace,
Amy

Blessings From Above said...

Thank you so much for taking the time to write that. You are such a strong and amazing family. I will boldly be praying that the Lord holds you in the palm of His hand over the next few months.

jamie said...

Thanks Nate. I cannot begin to imagine what you have been through, but can only imagine how rough it has been and is. Please continue to get rest. I continue to pray for y'all and hope the light at the end of the tunnel gets brighter and brighter as the time passes. You, Tricia and Gwyneth will remain in my prayers.
God Bless you all
Jamie in Texas

shoutingforha said...

Thanks for the update. Praying that Tricia continues to grow stronger with every day.

Meredith said...

Thank you again for sharing your story with the rest of the world. By being transparent to everyone you have opened so many opportunities for others to pray for your family and in return we have all been able to witness God's miracles take place right before our eyes. Don't feel like you should apologize for anything as we should feel privledged to be apart of this miracle and to see God's plans for you and your future. This kind of opportunity doesn't come along too often and I feel very blessed to have been able to pray for all of you and be witness to the God's amazing works. May God continue to pour out his love to all of you today and looking forward to more great news!

Kristina said...

Thanks Nate, I don't think any of us can even begin to imagine the stress of your situation. I will continue to pray that the Lord holds your family closely and tenderly at this time as you all recover physically and emotionally. Praise the Lord for the optimistic outlook at this point!

Em said...

Thank you for being willing to share with us during this difficult time. It is so appreciated and you are so amazing to do it! It certainly helped to paint a small picture of what your world has been like the past couple of weeks. Wow!

I know that the best day will be when you get to take BOTH of your girls HOME to live a "normal" life. I'm praying for that day to come soon for you all, as you truly deserve it! God is so amazing to bring you through all of this and to continue to provide!

Thank you again for being so open with "strangers." You are truly a witness and I pray that many lives will be touched by your story.

Anonymous said...

I am always humbled by your honesty. Even in your (completely deserved) censored honesty, your willingness to share this journey with all of us strangers who have fallen in love with your family.. it's just amazing. Thank you Nate. Your blog has been a real blessing to my family.

praying daily.
sara in kentucky

Sara said...

thanks nate for sharing all of that - your openess on this subject is amazing to me! keeping you all in my thoughts & prayers throught this phase & also for the donor's family!

Jane said...

your roller coasters...emotional and physical....are TOUGH!!! None of us can imagine what you are going through...unless they or their loved one has had a transplant. And then every person and their illness is different than the next.

I'm praising God for His grace to get you guys to this point.

Tricia...I can't imagine your pain...I know what I felt like in Feb when I had a "minor" laprascopic surgery... girl, you are one of my medical heroes!

Nate, you got a tough one on your hands...look out, once she gets up and going, she is going to be a handful! :)))

Still praying for you guys, and the donor family.

Christy. said...

I think of you all often and you are in my prayers! Thanks for writing about the past two weeks. One day you will read this back and be amazed at how God gave you all the strength for each day!

Kerry said...

Keeping all of You and Family in prayer.

Deb Johnson said...

Nate, thank you for sharing your "condensed" update in such a difficult time. Your words are my tangible "God" connection. When I feel I've become disconnected with Him in my life, I can read your words and trust that He is there all the time just loving me where I am. One day I hope to visit your church, too.

Meghann T said...

Thank you for sharing what you have. Knowing even these few details makes it easier for me to know how to pray. My thoughts and prayers are with you, Tricia, Gwyneth and your families. I cannot imagine the range of emotions you are feeling or the immense stress you are under. I hope that somehow my prayers, and the prayers of the thousands of others, will help to ease your burden.

In Christ,
Meghann

Mrs. Dan said...

Wow. Just wow.

God is good. He has sustained you and your family. He is healing your girls.

Continuing to pray here in CA!

MahoneyMusings said...

Nate, thank you for sharing with us, and thanks for the reminder that there is so very much more going on than we can or should be privy to. I continue to be amazed by your strength and trust in God.

Continued prayers for all of you,
Colleen

twin power mommy ♥ said...

wow. thanks for sharing that with us. continuing to pray for Tricia's recovery, as well as your sanity during this trying time. Stay strong! Psalm 91

Randi~Dukes and Duchesses said...

I can't even imagine what you've been dealing with, both physically and emotionally. We're praying for all of you and look forward to future reports of Tricia chasing Gwyneth in the backyard!

Destini said...

I'm so thankful that you have been able to get some much needed rest. You are a much more effective advocate when you are rested! :)

I can only begin to imagine what the past few weeks have been like for everyone involved. I continue to pray that the upcoming weeks are filled with more healing and less pain for Tricia. That has to be very draining on everyone.

I am still completely amazed how tx surgeries take place especially in the lungs. That is truly amazing that they can do that and in such short time, a person can heal. Our God has certainly created some resiliant bodies! I am praying continually for your girls (& you!)
Blessings,
Destini

Anne said...

Thanks for your honest update!
My prayers are with you and your girls as always...
I pray that they get stronger and healthier every day and you can all go back home together soon!

The Beaver Bunch said...

Thanks for letting get a glimpse. You guys are amazing. Still praying...

Our Two Blessings From Above said...

Thanks for the update.
Still praying!
I pray today is a great day for all of you.

fuzzandfuzzlet said...

Thanks for the update. My DH has worked in the medical field and could write a book about the (sometimes humorous) effects of pain medications. The bottom line is they do effect everyone, usually in a way no one anticipated.

I am sorry for the short term memory loss. If there is a silver lining it allows her to forget some of the pain, and the less than glamorous moments of recovering from such intense surgery.

I hope that she feels a little better every moment of every day.

I am in awe of the progress she has made.

elizabeth engelhardt cards and creations said...

Thank you for being so honest with all of us. You are an incredible blessing to your family. Thank you for allowing us to be a part of it and pray for all of you. Hang in there, I can only imagine what you are going through. Ya'll are still in our daily prayers.

Marsmile said...

Thank you, Nate, for the update regarding the surgery and the several days following surgery. Please do not feel compelled to share every single detail because you all have the right to privacy, a right we all have!

I truly appreciate you sharing what you can and I clearly cannot imagine the pain, hardships, emotions, etc. you all have experienced. In just a few sentences, you have strongly pointed out how difficult it has been and we don't need or have to know more than that.

The most important thing is our overall understanding in order to be able to support and pray for you all.

I pray that Tricia continues to recover and get better as soon as possible. That her pain lessens dramatically and that she'll feel much healthier with her new lungs. Also, that you three will be home soon enough!

I hope you are continuing to get your much needed rest and please don't feel compelled to post on your blog more than once or twice a day. Keep your energy and focus on your two girls, as well as yourself. :-)

Thank you again for sharing with us and being so honest. All the best and take care!

Blessings,
Marissa :-)

Kelly said...

Thanks for the update. Even as good as God is, life can be hard and you are experiencing very real, human emotions. Praying for your continued strength, Tricia's continued progress (tough as it is), Gwyneth's growth and progress, and His continued blessings on your life. It is a true testament to faith, hope and love!

Best,
Kelly

Catherine said...

Thank you for sharing all that you did. You are a remarkable family.

Paige Hinrichs said...

I respect your decision to share updates/details or not, but thank you! I think about and pray for you all every day. I'm sure this has been much more difficult than any of us could ever imagine.

I pray for Tricia's continued healing and strength. I also pray for your peace of mind. May you all have a wonderful day.

Love my boys! said...

You have all been so much that the average person can't understand. Thank you as always for sharing what you can. These are the most intimate parts of your life that you are sharing and we are very thankful. We will continue our prayers for all of you and your families.

God Bless.

Bailey said...

i am once again reminded of how generous you've been sharing this extremely difficult but miraculous journey with all of us. thank you for being the wonderful people that you are. we are still praying, as always!!

megasam said...

Thank you so much for sharing all that with all of us. I can't imagine what it was like to actually live these past couple weeks, months actually. You have been amazing to share what you have with all of us "strangers". After following for so long I feel as if I know you but I have to remember that you don't know me.

I have a quick question. When will Tricia have the trach removed?

I am praying for Tricia to gain more strength every day.

NCBeachMom said...

Oh nate, I can not even begin to imagine what you and family have been going through, even with your explanations, it is beyond my comprehension.

Know that I am continuing to pray, lifting you, tricial and gwen to the great physician and lover of our souls.

Thank you for the privledge of allowing us to follow you on this journey.

Karen said...

I am sure you have shared more than you are actually comfortable with, and I thank you for the synopsis. I cannot imagine the pain Tricia has endured, and a different sort of pain her family has endured, having to watch and wait from afar.

Tammy C said...

Thanks for the update.I am glad to read that you are able to be there for tricia and Gwyenth.

Meg said...

I am amazed by Tricia's strength and courage. She is an amazing woman!

Jesse said...

Still praying for you and your girls.

betty said...

I'm amazed with all that is going on in your life, you take the time to update - thanks as I check your blog serveral times during the day! I pray for all of you -what a wonderful family you have.

Danielle in MO said...

I can't even imagine - listening to the story - makes it hard for me to breathe... bless Tricia.... still praying and praying!!

Cassie12 said...

Nate:
Thank you so much for your update. It helps give us a better perspective of what has really been going on. You are a wonderful, giving husband/father. May God Bless YOU and YOUR FAMILY. I continue to pray for you and your family.

candicesalazar said...

Praying that you all are able to feel the Lords grip all around you (and your families). So sorry that you are having to endure "outside" issues, too. As ALWAYS, you all are and continue to be, the blessing of a lifetime in countless ways...We are all here. Watching God. And cheering you on through your journey. HANG TIGHT. God's mercy endures. You will have YOUR moment soon. CAN'T WAIT TO SEE THE PICTURES OF THE THREE OF YOU ALL WAVING AT THE HOSPITAL ON YOUR WAY HOME!! Praying in NE!!
Nurse Candice and CO.

Rachael said...

Hi Nate

Thank you for sharing so much with us. I can't begin to imagine what the last few weeks have been like for you all, but have been thinking of and praying for you all.

Stay strong,
Rachaelx

Jill Pagels said...

I'm so glad that God has blessed you thus far and know that He will continue to do so according to His divine plan. I've enjoyed following your story and have gotten a lot out of it personally. Your family is an inspiration to many, thank you for sharing with us all!

Larissa said...

I have absolutely no idea what it must be like to be in your shoes.

But I know, beyond a shadow of a doubt, that God is good and will continue to sustain Tricia and you through every moment of each day. Praise him for hearing and answering our prayers, and the Spirit's prayers on our behalf, even when all we can manage is crying to him!

I'm praying for continued healing, rest, strength, and joy for Tricia, you and the rest of the family. I'm so glad to hear the wonderful recovery she'd made so far!
~Larissa

Unknown said...

Thank you Nate. Praying as always for you all.

Erin & Gary said...

Thank you, again, for sharing your story. God has used you, Tricia & Gwyneth to bless me in so many ways. Please do not feel apologetic in any way. You are doing all of us readers a favor by sharing your story.
God bless, & the prayers are still coming your way!

Annette said...

Thank you-this does help alot to understand what is happening. I appreciate you opening up parts of your life to us- you have been an inspiration to me. (you and Tricia)

www.smithfamilyx6.blogspot.com

Vicki said...

Nate, thanks for sharing this with us. I can't begin to imagine how incredibly stressful the past few weeks have been for all of you. Please know that all of you continue to be in my thoughts and prayers. Praying God's blessings on your precious family.

Candy said...

Thank you for updating us and giving us a tiny glimpse of what you all are going through. I cannot begin to imagine it, so I won't even try. Your family is incredibly blessed and I am honored to be praying for you all.

AlaneM said...

Nate thank you so much for what you share with us. Each post is a gift & a blessing - I think you give us just enough to have a glimpse of what you are dealing with, without giving us too many personal details.
God bless you all,
Alane

rthling said...

I am so thankful that in the midst of pain and trauma, you are willing to be seen of others, so that the Father might be glorified. He will stand by what He said. "If I be lifted up, I will draw all men unto me."
Keep lifting Him up, Nate.
You are doing such a good job. Now don't be getting a big head, but I know that one day you and Tricia will look back on this time and see what a blessing you have been to others, and even to God.

I never cease to be amazed at the gift of your information every time I log into your blog. We don't have the right to this large a window into your private lives, but we are so grateful to have the privelege. You need not apologize for keeping any of it private.

As for the few nights you got to sleep in a real bed, God was not surprised that you didn't get to spend that time with Tricia. He wanted you to rest, and that's what you did. Don't be ashamed to be thankful for that time.

I'll be praying that Tricia will be delivered from her pain and memory loss. What a gift it will be to her to read your blog and catch up on what she doesn't remember.

Praying, praying, and praying some more in Tennessee.

Diane

mom nana nelson said...

It is refreshing (to say the least)
how well your families ACCEPT each other, parents,siblings,cousins,
aunts, uncles, those married into a family..
It only takes one to not accept another family member,
it divides & seperates family members...what happens to the unconditional love & trust & the bond you only share with family members...
it is heart breaking that this happens....
why would one ever want to put a wedge between family members,
once there is a wedge -
how do you move on past it,
bringing your family back togeather as it should be, leaving everyone feelng whole again
thank you nathan for your posts please thank tricia too
i do feel it is a blessing to be able to read about your journey
God Bless You and your families
PRAYING FOR YOU AS ALWAYS
patricia n.

laura said...

thank you for allowing us a glimpse into your life with your precious ladies- i can't imagine how difficult it has been. it has been a pleasure to be able to pray from texas for your family.

Anonymous said...

It's nice to see you back on the blog, though I completely understand the need for a break. I think it is pretty cool that you are willing to be so transparent and let people in on your life story so that God can use it for His glory. There are not many people brave enough to share the most personal, most emotionally intense experiences of their lives. I'm sure it's tough trying to balance sharing what is real and impacting -- both for your family and for strangers God may be touching through you, while at the same time maintaining a safe and private place where your story is only yours -- only for the people closest to you.

Thank you from one of many blessed by your family.

The Mom Jen said...

Thank you for reliving even the hardest of moments! Our prayers will never stop for the health and happiness of your family.

Anonymous said...

Praise the Lord! Praying for a continued strength for you all. An that you three will be homeward bound very soon- happy, healthy, and enjoying your new life as a family. Away from the joy's of hospital life.

So happy for you all!

Carol said...

Considering the pain of ONE chest tube and how painful even a C-section is, I can't even begin to imagine how painful a double lung transplant in a patient with scarred up lungs would be. And, I think it is always hard to realize that something that you looked so forward to for so long still carries difficulty and pain--even though I know you guys knew that ahead of time. But, I'm glad you're able to be back together again and that Tricia is getting better each day!

Unknown said...

Thanks for giving me a better idea of how to pray. It´s easy for me to think that the hard part is over, with the transplant being over, but I´m not there to feel the pain and stress of the recovery. So, thank you again, and I will continue to pray for you and your family.

In Christ,
Dionne Medina

Sonja said...

Nate,
Thank you for sharing your blessings with us. I am continually uplifted by your strength in God and eachother even in the hard moments. I could not imagine going through what you or Trisha or Gwenyth have experienced. My prayers are being sent for the needs of all of you and each of you. God knows what they are. May God continue to bless your family.
Tell Trisha I said "Way to go girl." She is remarkable as God has made her to be.

Sonja
Florida

Shari said...

Thank you Nate for updating. It is a blessing to "hear" you and have you back. There are naturally going to be things that need to be censored and not spoken. Know I continue to pray for your girls everyday and count it a privilege that you allow me to do just that. I continue to pray for you as well. Blessings and have a good day!

Fern said...

Whoever first described women as the weaker sex never met a Tricia.

Laura said...

All 3 of you are so brave...still praying!

Anonymous said...

Nate, Thank you for the update and a glimpse into the past two weeks. Our Lord continues to amaze me with his healing hand on your family. I continue to life you all up daily!!

Mary Knapp Yahoo said...

Praying for Tricia! I know it will take time but oh my how far it has all progressed for both your "ladies" already!! Do not feel you have to read our every blog comment Nate. They are our way of saying we care and we are here praying for you guys. Do not let them become a burden for you!!

Lauren M said...

Thank you for your description. I cannot imagine the pain of such a surgery or the pain of seeing your wife go through such an event. I could definitely understand your break during that time, though, and what you have given us is a lot.

Shan said...

I cannot imagine how hard this is for you guys. But you are doing such a great job remaining positive and trusting in our Lord. Many blessings to you.

mom nana nelson said...

Oh I totally agree with Fern's comment 5 or 6 above this...
Nathan you guys share more than anyone of us (in Internet land)
could ever look for....
it is NOT our right
but it is TRULY a privilege & a honor to follow you guys along on this journey,
NOT something we should ever expect or ask for
We (us in Internet land) fell in love with you guys
because of WHO YOU are...
which we only know because you invited us in.......
for this I THANK YOU over and over again
Still Showering You & Yours Lovingly with Prayers and Happy Wishes
Patricia N.
You Gwyneth Rose is Such a STRONG Spirt, SHE Sure Is SPECIAL, that Beautiful smile of Gwyneth's is Forever in my minds eye.

Saralyn said...

We're continuing to pray for all of you. May you see God's faithfulness abound to all of your generations!

Bobbi said...

Thank you for the update...you are all still in my prayers.

Bobbi said...

Thank you for the update...you are all still in my prayers.

Jen in Al said...

thank you for sharing what you feel you can. i am so amazed at how well you handle what info to give and what to keep private. continuing to pray for the requests known and even for those unknown :) hope you have a happy visit with your girls! praying, jen in al

Mary said...

We'll continue to pray for all of you. Keep your chins up! Remember that God has you in the palm of His hand and one day you will look back at all of this with a sense of clarity and see how far He carried you. May He continue to bless you.

Mary
Florida

Alisha said...

Thank you and your family for the willingness to let 'the rest of the world' get a glimpse into what you and Tricia are going through.

The Marini's said...

Thank you for being so honest with us about what it's been like. It is very easy for an 'outsider' looking into your situation to only look at the positive and be, I'm sure, almost annoyingly optimistic. Only you and tricia and your family know what it's really like and know the struggles you all have gone through while trying to convey to us all the latest news and updates and prayer requests. I can sorta relate in writing my son's carepage that there are just sometimes I feel like no one gets it... no one can really comprehend what's going on in our hearts and lives unless they were living it day-to-day, like us. I can tell you one thing, that there are people out there who genuinely care although I know you also find all the people out there who may seem to just not 'get it' or even always look for a fault in your words. I hope you will take the good from all this. I commend you also for 'taking a break' from blogging. I know you probably needed it. Give Tricia hugs and high 5's from us for her amazing strength. Many blessings from Maryland!

Angela R. said...

Nate, thank you so much for sharing! No matter how much you do or do not shrae, no one will ever know or even begin to imagine what you all have really been through. But each day you truly show how you and your girls have amazing strength! Praying for you all always. Hope each day gets easier and brings you closer to bringing your girls home!

God Bless!
-Angela

mjdav said...

Your honesty and openness is so appreciated. Bless her heart, Tricia has endured so much. As I pray for our little Ashley, I pray for your girls as well. You are very blessed even thru the valleys you and Tricia are walking. God has you in the palm of his hand, no better place you could be.
Ashley's Grandma (our little 3yr old CF'er)

Heidi said...

Tricia! Keep working hard girl!! I promise it gets better. After my transplant I wondered if I had made the right decision...but slowly it got better and now I hardly remember what it was like before. You'll be breathing deep and pain free in no time! hang in there and keep pushing! Hopefully somebody has gotten you a stroller, because you'll be pushing your baby girl out of that hospital soon! Praying for you daily and wishing you pain free deep breathing...and coughing!!

Amy said...

Thank you for sharing that with all of "us".

Sincerely,

Amy

lindsay said...

thank you SO MUCH for sharing what I'm sure seems impossible to put into words. Still praying...

Anonymous said...

thanks for sharing the update with us. Sounds like Tricia was in excellent hands with her surgeon! God bless Duke and their amazing staff! I hope the wonderful nurses are getting credit where due for all the amazing care they are giving your two girls. Nurses rock!

Anonymous said...

I was wondering if the docs say if Tricia is able to have more kids now that she has a transplant now? I know you said they were against her getting pregnant before the transplant. (I sure hope so! Gwyneth is soo cute!)

~j~ said...

Keeping vigilant in prayer...

Melody said...

What an account . . . thank you for the update. Will pray for continued healing.

Kim said...

Thanks, Nate. So nice of you to update us. Praying for you all.

Unknown said...

Prayers for Tricia to feel better than she did pretransplant soon. You are one tough girl, Tricia.

Heather said...

As the daughter of a heart transplant patient (4years ago) the pain, exhasution and excitement you are feeling is all too real for me. I'm so joyous for your little family. It is an amazing miracle. The healing will take a long time. My mother was in the ICU for 2.5months after her transplant so your wife is moving faster than some :) Best of luck to you and your little family. Each day is a small battle. You have to win small battles to win the war. I'm so grateful to our Heavenly Father for modern medical miracles.

bdodge said...

Praying for strength of spirit, unexplainable peace, and a future filled with hope for Tricia and you!

Jeremiah 29:11
I know the plans I have for you,” declares the Lord, “plans for welfare and not for calamity to
give you a FUTURE and a hope.”

Anonymous said...

oh wow, I didnt realize Tricia's mom was there every day full time ,too. I guess I thought you were there with Tricia on your own, with visits here and there from family...I'm so glad that you are not alone there and that Tricia has her mom there with her everyday. Tricia is definitely extremely lucky that her hubby and mom are able to take the time off to be there with her full time at the hospital! What a blessing indeed!

Megan @ SimplyThrifty said...

Thanks for the update of what's been happening. I'm so thankful that Tricia is doing so well. I've had many sx's myself...none anywhere NEAR a TX though. I pray that these days of recovery will be quick and that your family life at home can begin again SOON.

When I was 10 I spent 3 1/2 weeks at CHOP and I had two roommates with CF who became friends with me because we all arrived and left within one day of each other. Their names were Casey and Justine. I wonder if Tricia knew either of them with all the time she spent at CHOP. No need to reply unless you want to.

Emily said...

Remember those earlier days after you had received the light, when you stood your ground in a great contest in the face of suffering. Sometimes you were publicly exposed to insult and persecution; at other times you stood side by side with those who were so treated. You sympathized with those in prison and joyfully accepted the confiscation of your property, because you knew that you yourselves had better and lasting possessions.

So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised. For in just a very little while, He who is coming will come and will not delay. But my righteous one will live by faith.

Hebrews 10:32-38


Thank you for living by faith and for letting the world watch. When you are weak, then He is strong.

Emily said...

Remember those earlier days after you had received the light, when you stood your ground in a great contest in the face of suffering. Sometimes you were publicly exposed to insult and persecution; at other times you stood side by side with those who were so treated. You sympathized with those in prison and joyfully accepted the confiscation of your property, because you knew that you yourselves had better and lasting possessions.

So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised. For in just a very little while, He who is coming will come and will not delay. But my righteous one will live by faith.

Hebrews 10:32-38


Thank you for living by faith and for letting the world watch. When you are weak, then He is strong.

North Carolina Mom said...

Wow.

Scott said...

Thanks for some insight into your world. You guys should be prepared for whatever life throws your way after this "boot camp" experience. We are still praying everyday for you guys.

Tinypoppet said...

Hi Nate, you commented on my blog I wrote about you guys a while back....

I just wanted you to know, I was on a ventilator for 10 weeks post transplant, was thoroughly fed up and felt like I'd never felt so ill.

I now have a full time job, have signed up to a 5km sponsored run and am living life to the full.

Trish will get there, it's just a very very hard road and as you say I think it's quite common to feel worse post transplant than you did before, at least she was used to feeling how she did, this is not only hard work but it's all new.

Keep going :)

Anonymous said...

Nate: Please don't feel obligated in any way to tell us anything beyond the "surface" -- despite the questions you are asked by total strangers and the seemingly endless comments of how people have become "addicted" to your blog. You have done such a wonderful job at bringing awareness to all three of your issues (CF, organ donation, premature birth). God is mighty proud of you, brother. Mighty proud! And we continue to pray.

Heidi Reed

Becky said...

Thank you for being willing to share from your heart. Our thoughts and prayers are with you.

amy smith said...

my heart is breaking a little bit for you, that what was once set up to simply keep family informed has turned into this. i know you are thankful and grateful, and appreciate the publicity for CF and organ donation, and preemies... but it has got to be hard to be thrown into the public eye unexpectedly. sorry nate. praying for privacy and love and healing.