Tricia continues to do well. She did not sleep much last night, but hopefully they'll have her out of the ICU within the next few days so that she won't have to deal with the possibility of psychosis again. She did take a walk last night after I left, and she'll do some more walking today.
I've spent about an hour with her so far today. She is still having short-term memory loss...she didn't remember anything from yesterday, and she is forgetting things as short as 2-3 minutes back. This is common, and something we dealt with last time in the ICU. She is very thirsty (which is also very common), but she is not allowed to drink anything yet (they'll need to do another swallow study first).
It is mentally difficult for her to get used to the physical differences of having new lungs and the 8 chest tubes. Sensations that she has had for years are still there, but either now mean something completely different or are just phantom (imagined because she is so used to feeling a certain way). I told her yesterday, as she was trying to cough for the first time, that this is the clearest I have ever heard her lungs.
She'll be exchanging her G tube (feeding tube) for a GJ tube. The G feeds directly into her stomach, while the GJ tube will feed directly into her small intestine. This is critical, as it will bypass her stomach and allow her to begin "eating" again without the danger of throwing up and then aspirating (sucking stuff down her lungs), which would be very bad for the new lungs. She'll also, hopefully, lose a few of the chest tubes today.
They'll also be placing a new pic line, which is always an issue. I've explained to her nurse that they will not be able to place the line unless they take her down to radiology...hopefully they'll listen to me this time (as opposed to every other time the past 2-3 years/10-12 pic lines). Her nurse seemed to understand, so we'll see.
This ICU is incredibly more strict (and understandably so) than our visit to 8200 a few months ago, which is extremely frustrating for me. I'm used to spending any amount of time at any time that I want to with Tricia, being in the room with her during any and everything, watching out for her needs and making sure that I can advocate for her (about things like the pic line), so spending more time in the waiting room than in her room right now is very tormenting. Last night was the first time (ever) that I wasn't given the option to stay with her in her room.
Gwyneth is doing great. I'll be helping to feed her again in just a few minutes. She gained several grams last night, and she is getting used to her new feeding schedule. The nurses continue to be amazed at her physical strength and mental awareness.
Thank you so much for the thousands of comments and emails over the past few days. I haven't even begun to catch up with the comments, but I was able to catch up with emails.
My family (see sidebar links) continues to blog about this journey through their own eyes, and I encourage you to visit their blogs for some different perspective.
WE are still praying for you all!!
Keeping you in our prayers. You have two strong females in your life...they're going to keep you on your toes...I hope you're ready. :)
Praising God for progress so far and continuing to pray!
updates sound great... still praying.
Thanks for the update.
We are praying and watching for you. Last night my 8 year old wanted me to make sure that I would donate her organs should something happen to her! Wow, and then we prayed for Tricia's new lungs to work.
Will check in later, from the Pacific Coast of Vancouver, BC
Thanks again for the update. We are still praying for physical as well as emotional and mental healing for Tricia! May God continue to pour out His blessings on your lives!!
I hope you got some good sleep last night Nathan. I look forward to reading about the strides Tricia will make today!
It is wonderful how Tricia is progressing. You guys are a true inspiration to us all! I hope and pray that Tricia has a safe and speedy recovery. Hang in there, it won't be too much longer and you will have both your girls at home with you!!
Love and Hope from Ohio
Praying Tricia gets some comfort today. She is a strong girl!
Thanks for the update on Gwyneth as well. She's getting to be such a big girl.
Praying the nurses listen to you today too. :)
This is the day that the Lord has made. We shall rejoice and be glad!
Burnie, Katie, Greg and I are so thrilled and thankful for this good news! We love you. See you soon.
Bless your heart - we are praying - for Tricia, Gwyneth, and you - as well as both extended families...I pray that God floods your minds, hearts and spirits with such peace and such a presence of Him - Sunshine
Hooray for all the great progress... anytime I can, I say a quick prayer for your family and for the family of the donor... glad to hear that the baby is doing great, also... all the best from Kansas...
Nate- the prayer traffic to Duke and Tricia's room must be level 10! Sounds like great progress and I hope the day goes well. It is probably a blessing that Tricia can't remember things at this stage of the game. Take care of yourself too! All the best, Kerry in CT
My husband was the same way about the PICC line. absolutely. And the same way about IV's, practically! He despises them, and this last week when we were back in the hospital, he was stuck 10 times by 3 different nurses who didn't do it right, and he was in agony. Sometimes I think the medical staff thinks we're pushy spouses, but I don't CARE - this is our life and our soulmate and we know what they can tolerate and what they can't, especially after dealing with this so long!! I will pray she gets the IR people to do the PICC.
So glad to hear she is still making it through recovery - the ICU is the worst, I hated not being able to be in there as well, and being in the waiting room is the worst. But she'll be out soon and think of all the days you'll have together, getting used to these news lungs...
The Lord is so good. We are continuing to pray. :)
Thanks for the update. You and your family are definitely on my mind. Still praying!
Wonderful. Make sure you continue to advocate. Very important!! Can't wait to hear more, thanks for the continued updates--I know it takes precious time and energy away from the family. We love you!!
PS. I've asked before, but is there anything else we can do besides donating? Let me know!
oh my. praying for tricia, and gwyeneth.. and for you that this time of less contact will be short.
I am praying that God will continue to be Tricia's advocate at those times when you SO wish you could be. I cannot even imagine!! This is truly amazing to a part, thanks again for sharing.
praying for all of you
My prayers are with you and Tricia, that she continues to recover gently and perfectly in Gods plan. Look how far this miracle has come since you both arrived there last year. I am amazed at our God and the blessings He continues to pour out. To Him be all the praise and glory. Praying for both of your amazing girls Nate, and for strength for you as you wait.
Love, Laurie in Ca.
Hang in there Nate.We are praying for you all.
Thank you so much, Nate, for taking the time to update us. I continue to hold all of you in prayer (with a few extra ones for you!).
So sorry for your frustrations. PICC's are no fun--ever!!!
Still praying... I have my friends and family praying as well.
As I started to fall asleep last night, I couldn't help but think about you ... about Tricia ... about the donor's family. What a surge of emotions -- and I am VERY far removed from this personal situation! I can't begin to imagine how 'raw' you must all be feeling. But God has set 'Such a time as this' for all involved, and we pray all Glory be given to Him, the author and perfecter of everything. God bless your family today and in the days and weeks and months and YEARS to come.
Praise God for the continued progress! And constant prayer for Tricia, speedy healing, a quick exit out of ICU, sleep and stamina for Nate and continued good health for Gwyneth during this exceptionally hectic time.
Lots of praises!!!
Keeping all of you in prayer in the upcoming days, weeks, months...
Thanks so much for the update in all of theis Nate. It must be incredibly difficult for you not to be able to be with Tricia all the time. 8 chest tubes - WOW!!!! THAT's a lot!
I find it truly remarkable that she is up and about so soon - you did tell us it would happen, but it still amazes me! God has made us "ferfully and wonderfully" to be able to withstand sucha trauma and then get on with the recovery!
Love and prayers to all 3 of you!
Continuing to pray!!
I worked at a dialysis unit and we had a few patients there who would ask to use the restroom even though they hadn't produced urine in a few years. It is strange how your body can get so used to doing something, that you keep doing it even when you don't need to.
We are praising the Lord for answered prayers thus far and believe He will continue in you what he has begun. May He grant a speedy recovery for Tricia and no complications to slow things down. We will continue to hold you up before the throne daily --(and many times throughout the day!!)
What an awesome day. Thank God for being right there with her. I will pray for clearness of mind, the pic line goes well and it all just works the way it is meant to work. I won't forget to pray for you too Nathan. Try to rest when you can. This is emotionally, physically and mentally draining for you too. Take care of you too.
I am so glad to hear that things are going well so far. I will continue to pray for you.
I continue to be amazed at how much strength God has given Tricia. We have been praying for you all through this whole time and are so thrilled with all the progress she has made! We love you!
Nate - I can understand how frustrating it must be not to be able to be with Tricia so freely- especially not being able to advocate for Tricia. I hope that just being able to walk will curtail any ICU psychosis. I am encourage from the pictures and blogs of Alice - kind of gives you a sense that the really hard initial first days do eventually plateau and then things start progressing very well.
I guess our brains are pretty amazing that we would have those phantom feelings in the first place - and also pretty amazing that it can be retrained and adapt to a new reality. So much going on!
It is very exciting to read that Gwyneth could gain a few grams in a night! What a little trooper. I love the picture from two nights ago of your holding her and she looks as if she is trying to crane her neck to see you - it looks as if your voice is very familiar to her and she wants to know whats going on.
Your girls have my continued prayers - you have my continued prayers.
praying that God will do something new for Tricia--despite her past experiences in all sorts of things, that He will reveal Himself to her by doing something new with procedures. In our home we've decided that Gwyneth is growing into her skin, it's amazing how so few ounces can make her look so different. So precious! Praying for His grace to pour forth on all of you.
nate!! i just had in my heart to tell you that you ROcK dude! you are an awesome husband a wonderful father to a precious beautiful baby girl! you take care of yourself. the e-mails will get to when they get yoiu get to them. i am so happy for you and Tricia to have the milestones that you as a family have endured. i would like to take a moment and tell you THAnK yoU for posting all of this in the LIL time that you have to spear!! XOXO bonn
Thanks for the update, when you can't be at their sides take comfort in the fact that so many people are praying for them day and night. Hang in there! We are praying for you too, Nate!
We continue to pray for you all.
It's frustrating when you can't be there all the time. There were hours like that when my girls were in the hospital. i wanted so badly to be there every second that i could
we'll continue to pray
Nate, you are one very awesome man.
Love to all.
Just wanted to let you know I stopped by. I hope Tricia has a good day and continues to improve with each new day.
Nate.. thank you for the update. So happy to hear she is progressing well, and praying she continues to.
I hope everything goes well today!
I hope you all have a peaceful (but one of hard work for Tricia) day. You are continuously in my thoughts and prayers.
praying praise for progress so far and for upcoming hours/days to be just as successful! love you all -
Continuing to pray for your whole family!
Awwwwwwww, Nate! I again admire your strength. Both Tricia and Gwyneth are so lucky to have you as their advocate. Hang in there..."c-section day" seemed to last forever, too and yet now it seems a distant memory - this, too, shall only be a memory when you're on your drive 'home' to the OBX with Tricia and Gwyneth in the back of the jeep (or front, if you're taking the picture with your mac ;)!) Still praying...
refreshing in ohio
I honestly have been right there where you are today. My sister had a double lung transplant in 1998. Reading about this had brought it al back so vividly. Good Luck and your family an wife are in my prayers.
I have been away from my computer for a few days and what a surprise I got!!!! Just want you to know that I am praying , praying, praying for all of you. I am kinda worried about you though, please get some rest.
Love and blessings, Kristy
I was in a similar circumstance recently with my father and he was also in an ICU that wanted to kick me out at a certain hour. I pressed the issue and found out that even though it was policy that the doctor had the ultimate say and I was able to get the doctors ok. I had to get clearance through security and the nurses weren't exactly thrilled with me but it was what my dad needed and that was all that mattered. I just thought that it might be worth a shot even if it means talking to the hospital director. Good luck and our family is praying for all of you.
Nate, thanks for the update and for telling us some of the new challenges, etc., to come.
I'm so sorry you're frustrated by the ICU situation. Hopefully, you and Tricia will both cope o.k. I can't even imagine.
Also glad to hear that Gwyneth is doing well. She's such a champ! :)
GOD is so good!!
So glad to read the update this morning. We'll continue to pray for Tricia today and all that is to come. Great news on Gwyneth!
Thank you for updating us, even though I just found your blog this morning it is so wonderful for me to hear of Tricia's progress, with me being the mother of a CF child I love hearing success stories, Tricia sounds like such a fighter...
Your sweet family continues to be in my thoughts and prayers,
Tracy in Alabama
You sound (well, read) more rested today. I pray you continue to rest well and that Tricia gets some much needed good sleep. It is so unbelievable to me that she could go through a double lung transplant and be WALKING last night. She is no doubt an incredible fighter....her little body has been through so much!
I had c-sections with all my kids and was such a big baby about recovery. Tricia is truly miraculous! Maybe that's where little Gwyneth gets it! You're also a fighter. Keep hanging in there!
So glad to hear of her continued progress and will be praying for everything she will be going through today.
I am hoping the worst is behind you guys and that all is smoothe sailing for Tricia from here on out. you've all been through so much! stay strong!
I'll be she is out of ICU very soon. I'm so happy she is doing so well. I'm praying things continue to go well for her. It was great to hear how wonderful Gwyneth is doing as well. Praise God for all His good works.
Thanks for the update! Please know that we are praying for you and your emotional health, as well as Tricia's.
What an awesome and amazing 72 hours you have been through!!
Fantastic News! Thanks for taking the time to update. We will continue to pray for Tricia's physical as well as emotional strength for the days ahead. Praise the Lord for all the wonderful progress thus far!! To God be the Glory!
Love and prayers,
The Edwards family
Hang in there. We are still praying for all of you. Thanks for updating.
Nate, I can understand how you must be feeling to have to sit on the sidelines and just wait, trusting all the while that the staff is doing what is best for Tricia. I am praying in the meantime, until you are allowed more contact, that God will grant wisdom and discernment for those actively involved in Tricia's care and that any input you have will be treated with respect.
I am so excited to hear how well the baby is and that the issues with Tricia will diminish when she is moved to the next floor.
I know the blog is a therapy of sorts for you (among other things) and thank you for your diligence in keeping it updated. I am sure there are lots of other places you'd rather be! Thanks again. I will continue to pray.
This is all great news!! I feel bad that you're not able to be with Tricia as much as before. I hope this changes within a day or two. Still praying!!
still praying for all!
I am so glad that Tricia is doing well and sweet baby Gwyneth continues to amaze me. You can tell that she is as much of a fighter as her mother. Be sure to get plenty of rest. Got to get back to work my self. My prayers are with all you guys. God bless.
Praying without ceasing... jen in al
Philippians 4:6-7 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Praying for all of you!
Glad to hear that she is doing well. I will pray that she can get out of the ICU soon, that they will remove chest tubes soon, that her GJ tube will be helpful to her, that they can do the swallow study soon, and that she will start to gain some memory function. Praise God for the progress she is making, so far!
Praise God for the strides that Gwyneth is making. She is a strong little fighter! Prayers for her continued growth.
Praying in Colorado Springs, CO. :)
You are sounding like a man who has had a few hours of sleep again, Nate! Bet even Meka couldn't keep you awake for long last night! It is so good to hear that Gwyneth just keeps gaining weight and eating like a champ! What a little honey she is! Will be praying that all of Tricia's procedures go without a hitch today, and that her mind is able to stay clear and focused. I'm also praying for peace and endurance for you while adjusting to a different routine for the time being. Glad your family is there to help pass the time when you can't be in the room. thank you so much for the detailed update! Surely God is in the midst of a great work!! :):)
Keeping you and your family in our daily prayers. Thank you for the updates!
Praying for you all, I hope they are able to move Tricia out of the ICU and into a family friendly, mentally/emotionally friendly room soon. Give her a big hug from all of us here in Georgia and know that we are here.
Praying that the hands of Tricia's care team will continue to be guided truly. Sounds like Gwyneth is eating like a champ.
i can't imagine how frustrating it must be for you to not be able to be with her like you're used to.
thinking of all of you.
Again, just awesome!! It still amazes me to be able to witness (through your blog) God's hand so powerfully working in your lives.
It's going to be so cool for you and Tricia to be able to share all of this with Gwyneth when she gets older. Not everyone gets to have such complete written and photographic details documenting their first months of life.
Thanks so much for sharing with everyone - you've surely helped some people with changes of heart/mind in regards to organ donation, pregnancy, and allowing Christ to work in their lives.
Keep up the excellent work Tricia! My thoughts and prayers are ALWAYS with you! :-)
Sounds like it's going pretty well so far! So happy for you. :)
Praying you continue to stay strong on your road to recovery.
I'm so happy for you all! Still praying for you all too!
I just discovered your blog today. What an amazing story. I'll keep you guys in my prayers.
God bless :)
continueing to pray
Glad to hear that things are going well. I am praying that Tricia continues to recover well. And, I'm delighted to hear Ms. Gwyneth is doing well too! Looks like the prayer warriors win again! lol. I hope you are doing well and that things continue to improve. I know the ICU situation is frustrating for you, but hopefully all goes well and she will be out of the ICU soon.
We're all praying for Tricia!!!
Love - Bill, Stacey, Josh, & Ben
& The Prayer Lists
Thanks for the update. Praying for your strength, Tricia's healing and the continued blossoming of our White Rose! God is covering all of you....Jeremiah 29:11.
~ Tanisha in VA
Praise God for more good news today. Praying for many more miracles as the day continues.
thanks so much for the update! i keep re-reading it..i am SO glad to hear news as often as you're able to give it to us Nate...thanks for your faithfulness. Tricia girl - i LOVE you!!! and kisses to baby Gwyneth!
What an amazing and awesome journey. I have been reading all along, but not commenting much.
Nathan I am praying for you all. I can't imagine how frustrated you must be with the ICU restrictions. You are so wonderful to think of Tricia's needs and be such an advocate for her. Thanking God that you've come this far and praying that all three of you can go home together in the near future!
Wow, 8 chest tubes!!! Thanks again for the medical details you include. Let Tricia know we haven't stopped praying yet!
Hang in there you guys! Know we are continually lifting you all up before God and we know that He has you cradled in His arms and carrying you through this. I can't imagine how hard this is on you physically and mentally, but keep you chin up and your face towards the Son.
((Hugs & prayers)) from Florida
God Bless you and your beautiful family!
Continuing to pray for Tricia and you throughout this day and weeks to come.
Praise The Lord for new lungs, new beginnings, Gwyneth doing well, and the next chapter. I will pray that Tricia continues to improve so that she will be moved from the ICU and that there is no infection or rejection. God Bless!
So glad for the miracle of a successful lung transplant so far! It just amazes me that that can be done! Still praying.
Great news about Gwyneth! :)
Pleased to hear things are going well. I pray little prayers all day long (especially when I listen to Plumb I think of you guys). The strict ICU is tough, but it won't last forever. There is a light at the end of the tunnel. Continuing to pray in KY
What an amazing journey. I can almost feel the frustration in your words, Nate. I pray you'll feel the peace of God fall upon you like a downpour of rain. A tsunami of peace.
Still praying in ND
Wow. Just wow. My thoughts are with you and your strong, strong girls.
glad to hear that she is up and moving and that your baby is growing away!! still praying that both your girls will go home at the same time!!! praying that you get to spend more time with tricia in the coming days.
Don't you worry about catching up with any of us!!! We totally understand that you have other things demanding your attention! ;-)
Hugs to Tricia and Gwyneth!
Sending more Prayers from Florida>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
It's hard to be away from Trisha I know, just remember God is NEVER away from her and maybe that will help you handle it better.... (I said Maybe! You are human and from this side of the computer, you love your wife more than anyone could ever understand)
Okay, I have a silly question but humor me. Can I bring you dinner? (I live in FL!) Whenever friends are in need that is my first response! I want to make you dinner! I am praying for you and Tricia! Praying the "professionals" listen to the "professional!" Praying that angels guard Tricia's mind when she is in ICU. Praying that you have HIS peace as you walk through these next days and weeks. Praying that all of your needs are met!!
Your love for Tricia just poured out through this post. I hope someday you will have the time to continue telling us your awesome love story.
Still reading. . . .still praying!
Nate, I can only imagine how you feel (and Tricia too!) about not spending time with her whenever you want. Especially since you've been with her pretty much all the time up at the hospital until now. We pray for a speedy recovery, no infection, no rejection and for the donor family to find comfort and peace in our Lord.
Michelle in MO
So glad things are going well. Stay strong, it's kinda uphill for awhile here, isn't it. Please continue to remember to take care of the caretaker! (YOU, Nate!) Keeping your whole family in constant prayer. God Bless you all!!
Jamie in Texas
I am still praying for all of you, this is really a new beginning for all of you, I remember what it was like for my uncle 3 years ago when he had his transplant and all the emotions that we were experiencing, it was exciting, and frustrating at the same time, but also a miracle, because my uncle could breathe again on his own!!!!! and he could walk without oxygen! As I was praying for all of you yesterday, I felt like I was back at duke with my uncle and I was experiencing the same feelings all over again!
What an awesome God we serve!!!!
You are all still in my prayers. I am amazed by Tricia. She is truley one of the strongest people that I have ever "met". God bless you.
It isn't very often and I should say this is my first reading a true story what it is like to be going through a transplant of any kind.Thanks for remeinnding us that the transplant is NOT what is on TV!!
Take care and I will be praying for you and the down time when you aren't in the ICU.
We are all so blessed to be witness to your commitment to your family as a husband and father,and most importantly your personal relationship with God. Thank you for the updates!! We will continue to pray with a glad heart. :) Deb,Matt,and Josh
Thanks for the updates. So glad to hear that things are going pretty well and it was nice to read that Tricia's lungs sounded so clear to you! That's very exciting! Your family is on my mind most of the time and I am praying for all of you a lot. Also glad to hear that Gwyneth is doing so great!!
Still praying in VA!
God is so good! While the days are long, and the nights even longer, i pray that He will sustain you, give you peace, rest and comfort. i pray exactly the same prayer for the donor's family, and also thanking them for the gift of life. . . not only for a woman's battle for life. . . but for a little girl's quest to have a mommy.
what a precious orchestration He has created! rejoice and be glad!
I was out of town and no computer...so had my son check the blog!! He called with the wonderful news about Tricia's surgery. Just home, checked your blog before unpacking the car.... and just want you to know that you are, and will remain, in my prayers as you continue to move forward.
God is Good!
You are such an inspiration. We are praying that she will heal quickly and that you will be ministered to as the supportive and Godly husband you are.
Thank you for the update Nate. I will continue to pray for peace and healing for Tricia. And rest for you. Hang in there! Anything else we can be praying for specifically?
I'm so thankful that things seem to be going well... it sounds like it might be a little slower or more frustrating than anticipated so I will pray for those things!
Many prayers continue!
Hi Nate, Thanks for the update! Talk to the hospital director and the doctor to let you stay. When I was in the hospital they were going to kick my husband out but we forced the issue because I was only able to remain calm with him in the room. I responded better to the treatments as well when he was closer. I also think it eased him a little. But it is not for the fainting of heart.
I can only imagine how worn and worried and frustrated you are feeling. Prayers of course continuing and tell little Gwyneth to take good care of her daddy until her mommy feels a little better.
ALL RIGHT!! Sounds like she is making REAL PROGRESS!! Once she gets out of the ICU things will get better faster! Also, the trying to cough thing is soooo hard! My first coughs were the most pathetic thing ever...because everything hurts sooo much. Encourage her to breathe deep and try to cough! It's soooo hard! I can't believe she's up walking...that is amazing! Her memory will start to come back when they back of the morphine...that stuff makes ya' loopy! Hang in there both of you! And that sweet baby girl!
8 CHEST TUBES....WOW! Tricia - you are AMAZING! Walking already....I never would have thought that a mere 24 hours after such an INTENSE operation that walking would even be a possibility. Thank you so much for sharing this journey of miracles! Nate, I can't imagine the frustration and helplessness you are feeling right now - I am praying - not only for a speedy recovery for Tricai - but for you - mentally, physically, spiritually and emotionally! What a perfect day it will be when you can watch your 2 girls laughing and playing together - no tubes attached!!!! So many people love and care for you - please don't forget that!
~Erin (North Carolina)
Continuing to pray for you all, and will keep checking in to see how things are going.
What an amazing blog! My friend told me to check it out. You are a strong man to be there for your sweet baby and wife. I must admit, it was an emotional blog for a pregnant woman to read. Blessings of health to you and your family!
The updates are making me so, so very happy for all of you. Both of your girls are doing so well.
Blessings you to,
You are very right what you said in the post above. I have had an aunt and uncle both who have had grave medical conditions, both of whom came very close to dying b/c of care they received and it was avoided b/c a familial caregiver was educated enough to say stop, wait and listen to me first. Shame to whomever was ugly to you. ADVOCATE her care. You seem to be a great husband.
It is INCREDIBLY important to have a strong advocate in the hospital. You keep doing a good job of that. Be strong. Stick up for your girls. Watch out for them. God has uniquely put you in this role right now. I'm so proud of you for what you are doing.
Praying without ceasing...
May God continue to infuse you with his strength. Tricia has a wonderful advocate in you - a very fitting role for a husband. Praying she receives exceptional care, knowing that above all, her heavenly Father is her primary caregiver and he neither slumbers or sleeps. Whew for that!
Praying for your family. Healing, strength, peace and all else God brings to mind.
Nate if I ever was in need of an advocate I would pick you 100% of the time. Rock on!
You are an amazing advocate for your girls. They are in very capable hands. Both yours and His.
Nate, You are so RIGHT. You must advocte for her. Forget about any negative posts / comments. I HAVE been in your shoes. 6 years ago I was at Duke with my wife in the ICU after having a double lung trans. If you dont ask who will? The Doctors and nurses do care, but not nearly as much as you. Duke is a teaching hospital, and therefore sometimes inexpierenced staff will take care of the patients. This is the nature of the beast. Tricia is lucky to have you in her corner, making sure she gets the best care. Keep it up!!!!!
Nate ... your words never cease to amaze me! You know the care that Tricia needs. Someone will listen to you at some point. Be her advocate!
I am praying for your strength, for Tricia's strength and resilience, and little Gwyneth's continued growth and improvement. What a day it will be when she is in the arms of her mother sans vent!
Let me tell you what to do, Nate. Just kidding. But, I agree with you--every patient in the hospital this day and time needs a caregiver/advocate--even ones without chronic medical conditions. And you are quite experienced, passionate, and concerned about Tricia's care so you hang in there and fight for her--as I know you will. Sounds like both Tricia and Gwyneth are doing great and that makes me so happy. I do think you probably needed a night of sleep so going back to the hotel the first day she was in ICU was probably good medical care for YOU who have been sleeping on the floor for months on end and worrying about two family members. Don't forget to take care of Nate once in a while.
Nate, you keep advocating for Tricia and Gwyneth as hard as you can. You are exactly right - you know what's best for them and what they need. Having a special needs child, I learned long ago to trust my gut and speak up for what needs to be done. We are still praying here in Wilmington.
I just wanted to let you know that I will be praying for you, Nate, especially this weekend. I can't imagine being the one to have to take care of everything while trying to be a husband and father. I appreciate what you are doing and how well you are doing it. God I know is blessed by your patience and steadfastness. Thanks for the example. Keep doing what is best, and like you said, never give up when it comes to Tricia and her care. Have a good weekend.
In response to your post above...
GOOD FOR YOU!!!!! Excuse me if I'm wrong, but aren't Tricia and Gwyneth YOUR BUSINESS???? More so YOUR BUSINESS than anyone elses? I think people who devote their lives to helping others are amazing, selfless and kind hearted. But that is there JOB, not their wife or daughter. I know I gave 110% to my job and there were days that I did better at it than others. There were also days I made mistakes. Unfortuatly, mistakes by doctors or nurses can mean pain or problems for the people they care for. YOU DON'T MAKE MISTAKES WHEN IT COMES TO CARING FOR YOUR GIRLS!!! You know them better than anyone else. You have stood by both of them for every blood draw or cough. YOU KEEP RIGHT ON ADVOCATING FOR THEM--EVEN IF IT MEANS YOU'RE NOT "MINDING YOUR BUSINESS." My sister had a very sick preemie. And had she minded her own business he would be dead. But because she didn't (and often times even came across as a b**ch) her baby boy is thriving and ALIVE!! You do what you have to do to take care of those girls of yours. Everyone else should just PRAY with you and be grateful that you've allowed us to be such an intimate part of your lives. There, now I feel better!
i am so glad that everything is going so well so far!!
Nate I have read both your posts today regarding updates... I was surprised at "Just Don't" as I felt I missed where you explained what the original problem was that you noted in order for people to comment inappropriately.
I imagine now that I've read the Update here that you received comments about the PICC lines and telling the nurses she needed to go to Radiology.
I have to say- I sure hope those nurses listen to you. I've only had a few experiences with midlines and PICC lines but I know that I, in my few times needing IV Abx threw a blood clot with the midline and was told NEVER to get a midline again and ONLY to get a PICC line under ultrasound AND radiology presence.
Me- who just needed a few months of antibiotics each time had no problem scheduling the pICC lines to be placed. WHY ON EARTH should Tricia have had any difficulty getting them placed under radiology???
STAND FOR HER NATE. You are indeed her advocate. Continue to stand for her at all costs. Don't back down. Because it is exactly as you said, despite the fact that Dr's and nurses have been trained and studied case historys etc.... this is YOUR WIFE. She is not a case. She is not a number. And she most certainly is not a chart at rounds.
Keep standing IN Jesus, for Tricia Nate. Praying for you all.
WE are praying and I really dislike the thought that people write stuff that would upset you. I am sorry!!
God is so good!!! Still praying for you all!
Praying for you today!
I just wanted to tell you that you are doing a great job. I, too, have had to play the advocacy roll to someone that was gravely ill. It is not an easy job. And then with everything on top of that....you have big shoulders. Not everyone will always agree with a decission that is made or with an action that is taken....and that's a huge responsibility for you. But the one thing that you can be sure of is that no matter the outcome of what you do or say/said....you did/do it's out of love, compassion and understanding for your wife. (My husband is a doctor...he is the first to admit he is not perfect nor does he know everything.)
From one caretaker to another....
Keep on keeping on.
Nate, My two-year-old daughter has had two open heart surgeries. At the last one, I know I was not given all the information as to what exactly happened in the OR when she had to be put back on bypass after a "successful" surgery. I fully believe in my heart they made a mistake, but I never got a straight answer. When questioned, I got semi-defensive answers from doctors I trusted. I was able to talk about this on my daughter's blog, and people were nothing but understanding. I did not have the entire web reading my day-to-day accounts when I was really frustrated and confused. (I was scared to be too upfront because she was still in their care!)
I am sure there have been NUMEROUS times you wanted to shut this page down so fast, but you haven't. Noone would blame you if you did...but I hope you don't. You don't deserve any of the comments you referred to in your latest post. If I were you, I would not feel one bit like praying for them, so I will do the dirty work for you. I promise to pray for them. Wash your hands of them. Know that it is handled. You have too many truly important things to tend to. Don't waste one bit of energy right now. You don't have that luxury.
You go on Nate with our bad self! I totally sympathize with you on being Trcia's caregiver. Richard goes to a teaching hospital so we deal with alot of residents and interns. It can get kind of hairy sometimes. But noone knows how a CF patient is really feeling except for them and the person or persons that is closest to them. And when they don't have a voice we are their voice. It is our job as wifes, husbands and parents to stand up for what is needed of our loved ones. I am so with you... way to go Nate!
Nate You Rock!!! Tricia Rock's and Gwyneth Rock's!!! I am amazed at Tricia's abilities after such an intense surgery. Nate you are an amazing caregiver and advocate for your wife. Keep up the good work. I am taking notes from you, since I am also my husband's advocate and caregiver. Thank you for updating us!!
Tricia is a blessed woman to have you as her husband!
We are still praying!
Nate, I've never commented before, but after reading Just Don't, I felt compelled to. Thank God that Tricia has a man like you who will stand up for what is best for her. I could only hope that in any situation my husband would be there to stand up for what is right for me. You and your family has experienced more than a lot of us readers ever will, and know what is best for each other.
Thank you for sharing your moments with us. Still praying for ya'll in Texas...
P.S. Can we have some more Gwyneth pics?? She is too cute! :)
I can only imagine how difficult this whole experience is on you. I am sorry that some people are choosing to add stress to your situation. May God continue to bless you and keep your beautiful wife and daughter safe.
God bless you, Nate, for being such a trememdous advocate and source of support for your wife. You are her angel. I'm praying for her continued recovery and health.
I had to comment on the above post--who ARE these people? Good Grief.....You are absolutely right, Nathan!
Nate, you are Tricia's hero. And a hero to thousands of us reading your blog. I'm sorry you have to endure a few idiots in the world who think they know how to care for your wife better than you do. Keep doing exactly what you are doing and don't let anyone tell you differently. You are the greatest gift in her life and you were put there for a reason.
Love and prayers to you.
I am praying for continued peace and healing! Nate, being an advocate and caregiver is the best this you can do for your precious wife and daughter! My mom did that for my grandpa! Press on!
Blessings from Arizona
God placed you in Tricia's life for a reason (and Gwyneth's for that matter). You are an amazing caregiver to them!
I've never been in a NICU, and therefore do not know a whole lot about them, but I think it's so cool that they let you feed Gwyneth! I know that if my baby was in a NICU, I'd want to be hands on as much as I could and I'm glad (for your sake and Tricia's) that they seem to let you have so much contact there at Duke and they let you do so much of her care.
That is just truly amazing! Praise God for our answered prayers!
I am sorry that some of the ICU staff have not been so flexible with you. Speaking completely from experience at the Duke PICU for 12 weeks with my newborn son and the 5 following stays there, you totally have got to be an advocate for your loved one. My son had developed a horrible blood infection after a bad PIC line was placed...after 7 days with still positive cultures, they wanted to take my very sick and fragile 4 lb newborn back to the OR for another heart surgery...we refused...we insisted that every single line be replaced before we would consent to another heart surgery...the doctors and nurses thought we were crazy and gave us every reason why it could not possibly be a line...well, Monday at 4 pm the last IV came out of him (they put a new IV in his head to keep fluids and meds going) and Tuesday morning at 4 am they drew blood and he was negative ever since! So much for what the doctors know and it makes me mad that we didnt do it sooner! Sorry to go on and on here, but I am all for advocating for your loved one, especially when they cant talk for themselves! You are an incredibly strong man and you just keep doing what you are doing!
It sounds like things are going well. I pray they continue on that path. I read your most recent post, and it's true there are good doctors and inexperienced ones (I'm sure we could trade stories). Good nurses, and ones who like to do things "their own way". Awesome EMTs (ambulance EMTs), and not so great ones. I just always pray that we get the "right" people caring for us when I have to take my 4 y/o in (she was born with several structural anomalies and has subsequent tracheal issues and asthma). I pray the same for you. And, you're right. YOU know your wife the best, and YOU have to advocate for her. When I take my daughter to the hospital, most of the time the doctors ask ME what I think we need to do, and they usually agree. We've been very blessed that the not-so-great experiences have been few and far between.
Hugs and prayers,
What you posted in your "Just Don't" post is so right on!
I am a CFer who has spent many months of my life in the hospital, and while thankful that it is available to me, it never ceases to amaze me how many mistakes the hospital staff (especially interns!) make.
So many horrific things have happened to me over the years due to "human error" of hospital staff. I have to keep an eagle's eye out at all times. I am often uncomfortable falling asleep knowing they will most likely forget my anti-nausea meds during the night and I will wake up in the morning vomiting.
Also the several times where nurses have come to hang an antibiotic, and I have to tell them "No, I just had that one, you are mistaken." Plus countless other "one time mistakes" that are actually even worse than those mentioned above.
Nate, since Trica is probably not able to be watching out... it is so good that you are there advocating for her. Her body has already been through so much and should not have to go through any more than absolutely necessary.
You are right. The BEST nurses graciously realize their mistakes and apologize. It is a job for them, but it is your life. Most healthcare workers don't realize just how knowledgeable Cfers are, because we have lived with it our whole life. Like someone else wrote the best "professionals" listen to the "professional."
I'm glad Tricia is still doing well. I can't imagine having to deal with so much, but I know your girls, and you, are very strong. I'll be praying specifically that they listen to you and allow you to share your concerns with Tricia's care. That's very important.
I'm so happy to hear that Gwyneth is still doing so well. :)
THANK YOU!! I LOVE LOVE LOVE exactly how you put your last post about advocating for Tricia. It is so heartfelt, so true. As a parent of a child who spends a good deal of time in hospitals and dr.'s offices... the BEST nurses and doctors are DEFINITELY the ones who listen to their patients and their families. AMEN.
I'm so sorry about whatever happened to upset you, but I am glad you feel better.
I don't even know you and I am proud of you. Proud of the provider you are for your family. Provider of love, support, care - among a jillion other things! Just a shining example!
Our family will continue to pray for your family.
This very week I was treated for 3 days on the wrong meds for the wrong dx. Meanwhile the "real" culprit/infection has gotten worse.
Even Drs and nurses at their best can sometimes be wrong.
You are so right, you must be the advocate. Besides God, you are the only one who loves them and will more then anyone else.
My husband has been know to
"show off" in the hospital for me!
I am sure 99% of people following your blog feel the same.
Glad you feel better though!
Keeping you in my thoughts & prayers - and nodding my head re: your post about advocating for your wife & daughter - advocate away, Nate - you have to. As someone in the medical profession and the spouse of a very well-trained doctor, I'm urging you - advocate away. You have the right to do so - and given the circumstances, it sounds like you MUST do so. I'm waging the same battle right now w/ my preemie son and it's horrendous - but it has to be done. Best wishes for all of you - your blog is so very inspirational to so many of us.
You ARE so right! Someone has to speak up for Tricia at this point.
I recall when my cousin was int he hospital. She was half-asleep when the nurse came in - called her by the WRONG name and began to prep her IV to insert some meds. Thankfully my aunt spoke up and said, "what did you call her?" Yup - you guessed it - she had made a mistake and was about to give her SOMEONE ELSE'S MEDICINE!
Was that an honest mistake? Sure. Could it happen anywhere? Of course. Was a disaster avoid because a caregiver spoke up? DEFINITELY!
PROTECT your girls Nate! That is your job & you do it WELL!
~Tanisha in VA
I just read your "Just Don't" post & I wanted you to know that I think you must be a wonderful husband & daddy! I think your girls are very lucky to have someone "working" for their best interests. I am praying for your sweet family. I pray that Tricia's new lungs will do just what they are supposed to do & that she only keeps getting better & better, I pray that Gwyneth Rose contiues to get stronger everyday & I pray for wisdom & strength for you as you do have to make alot of decisions. I hope you gain comfort knowing that you are a wonderful caregiver & that there are many people praying for you all the time!
I've been praying for you constantly over the past several days. I know the memory loss can be tough. My mom went in for routine angioplasty several years ago and due to (1) doctors didn't take her off blood thinners soon enough; and (2) they knicked a vein...she nearly died (she actually did die, but they brought her back). I live 3000 miles away from her so it was tough when I spoke to her the first and second times. The first conversation we had she still doesn't remember to this day. Doctors had cause a medicine-induced amnesia to help her body cope better with the trauma. Not sure if this is what is causing the memory loss for Tricia, but I know my mom says it's still a little strange to have lost an entire day of her life. God bless you for your strength through all of this. You and your family are in my prayers constantly.
Hi Nate, I have never commented before but have been checking your blog daily. I am so inspired by your families strength. I had a kidney tx almost 10 years ago and now my husband and i are wanting to have a child. the risks are high but have been cleared from my doctors to go ahead. any way i came upon your blog when doing a seach on premeeies and pregnancy after tx. keep standing up for your wife, I beleve everyone needs to have someone looking after them while in the hospital, pain meds and hospital walls can make you loopy at times. someone in their right mind needs to be aware of your needs in case others are not. well i know i blabbed on and on but I wanted to tell you i think of your family often and have said many a prayers for you all. I put a link on my blog so my friends can check out your story and send prayers your way as well. the more the merrier!
Good for you! I was a CNA for 5 yrs in a local hosp, and from that experience I learned that if ever any of my family are in the hosp someone is with them 24 hr a day. Nurses are overworked and understaffed. You have to be there to advocate for them. The squeky wheel gets the grease. And I hope and pray they listen to you about the picc line.
GOD BLESS you and your family. He is doing great things!
I haven't been able to check your blog for the last few days, and I jumped up and down when I read that she had the transplant and that it went well. What a wonderful God we serve!! I will continue to lift your family up to the Lord!! Thank you for keeping us updated!!
YOU are the best advocate your child/wife have that know them better than all the rest! You are so right not to depend on others to decide what's best. I am convinced that I would not be here today, but heaven, if my family had not been able to advocate effectively for me and the life of my unborn baby (now 6!). I thank God often that they were willing to go out on a limb for me because they knew me and knew what was happening wasn't right for me...even when the dr. said "it's nothing to start a bedside vigil over" and ended 24 hours later in ICU and a LONG road to recovery.
Praying for strength and courage for you and continuous miraculous healing for your girls!
What an amazingly difficult journey and what strength you (and those girls!) have. So many prayers for continued strength. An ICU journey is so difficult and post transplant so complicated on so many levels. I am so pleased you are getting to experience it but that doesn't lessen the real life stress involved with the entire situation. Here's to hoping the hard part passes quickly.
Nate..Your doing a wonderful job being an advocate and caregiver for Tricia and Gwyneth. By reading this blog I know you will always look after your Girls.
Praying here and Michigan for your strength to continue to do so. I know its never and easy job.
Thoughts and Prayers are with your Girls to.
I have faith you will always do the right thing for Tricia and little Gwyneth.
Take care of You to Nate. Caregiving and advocating for those we love is grueling work at times.
Prayers from Michigan
Way to go Nate...
I know that you are not looking for kudos, I love the way you passionately and eloquently relay the way things need to be dealt with in a hospital.
As a patient with lung disease myself, and having just a few months ago watched my dear brother go through a double-lung transplant, I know full well that the only person who can truly advocate for a patient is either the patient themselves or their loved ones.
When my brother had his transplant, the ICU he was in did not allow us in there after 10:00 p.m. and they were excellent caretakers of him, but they seemed reluctant at times to listen to us, the family, who knew him best. Like the fact that he had an extremely high tolerance for meds, like Versed and Fentanyl. So, when he should have been fast asleep with his chest cavity wide open, he was awake and alert and trying to communicate. They never did quite get it through their heads that he required more meds, even up to the day he died. He had a lot of complications and unfortunately passed away 3 weeks post transplant.
I had a situation last year where I had PICC line inserted, went down for a chest CT, and between coughing hard, laying flat and having my hands over my head, I was managed to cough that PICC line out of place and up into my jugular vein. For the next 13 hours, I could not get anyone to believe me. Everytime they injected into the line I had massive pain behind my ear. It was not until my parents and my sister came down at 11:30 at night that the "wonderful" ICU team agreed to take a chest xray and discover for themselves that I was not "exaggerating" or my favorite, "imagining it!"
Even the BEST care in a hospital and even to the BEST hospital workers and staff, Tricia is still not their wife, or their daughter, or their mother, sister, etc. So while I am sure she has had and does have excellent medical care, family is always able to look at things and situations with a different eye - an eye that is only their to protect and watch over that individual.
I know that this response was long and hopefully it is not among the others that will weigh on you...I myself have a website and have experienced what you are and have been experiencing...I call it the Fish Bowl Effect...aka, the here, now that my life is on display, please feel free to past any and all opinions, valid or otherwise mean, hostile, or even just too intrusive on my website. The good about these websites is that you can and have been a testimony to 1000's (now millions).
The bad, is that I think people start to believe that they own a piece of you - that they have the audacity to think they can tell you what to do. As a believer myself, I find it very interesting that this can be even more prevalent in Christian circles.
Hang tough Nate and family - it is great that even you have such a strong support system advocating for you, also, Nate.
May God continue to bless you all and bring Tricia and Gwyneth through all of their trials totally covered by the blood of the lamb!
RoseGirl, Southern CA
Nate, you keep being your wife's advocate. I do not have CF, but suffered a collapsed lung last year due to other surgical complications. I know of the pain with chest tubes, I know trying to cough for the first time, I know how hard rehabilitation is on lung issues. Trust YOUR instinct, keep listening to your gut, and your wife when you think somethings not quite right. Even Dr's and Nurses aren't perfect. This you already know. I am thankful that Tricia has someone like you to speak for her when she cannot. Last year, had it not been for my mom's advocating in my behalf it's very possible that I might not be typing this to you today. Bless You Nate. I hope you know how much your love and help to Tricia mean's to her. Praise the Lord for Tricia's successful surgery and I know she's going to do great with her new set of lungs. Go Tricia!! Breathe deeply and take in what you've been missing. Those on the sidelines are cheering you on. Love to all Heather
Oh, I almost forgot. I was also one of those who because of your blog have signed up with the state of Texas organ donation registry. Today, my good friend Carol Ann passed away from lung cancer and it just confirms that my decision was wise. Too many people needing organs to NOT give the gift of life. Thank you for encouraging others to do so. Love, Heather
holy crap, 8 chest tubes. that woman is AMAZING!
I just wanted to add my family's prayers. Your wife is lucky to have an advocate to be sure she is getting the best care possible. Be sure you are eating and sleeping as well. Thanks for your strength and courage
I've been following your story for a couple of months now but have never commented. The person (or people) who upset you obviously missed the underlying feelings that you were trying to get through in this post. You are, without a doubt, Tricia's best advocate and despite what notes the medical team takes, the best recorder and rememberer of what her days in the hospital are all about. You remember the details because you are there. Obviously, you were venting your frustration at your current situation because it is impossible for you to be Tricia's advocate when you are not allowed to be with her 24/7. I know that ultimately you are frustrated with the fact that you should be able to spend every stinkin' minute with both of them - and would be able to if it were not for CF. I'm sorry that others were not able to pick up on your subtle message and decided to offer their opinion.
I hope you are enjoying every minute with your wife and daughter (and your wife's CF-free lungs!!) and I'm praying for you to have peace and joy, and wonderment EVERY SINGLE DAY!
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