Friday, April 4, 2008

Just Don't

Please, know that I say the following to a very small minority of my readers (I am NOT speaking directly to anyone at Duke).

Unless you've ever been in my shoes, don't even bother trying to educate me about how things normally work in a hospital ICU (ESPECIALLY when I specifically said "and understandably so"), and don't even bother trying to "kindly" (or otherwise) suggest that I mind my own business when it come to my wife's or daughter's care. I am the caregiver, and although I have NEVER "told" a nurse how to do her job, I have and will always continue to advocate for what I consider to be the best care for my family.

I trust the Duke staff tremendously, but I also have enough experience here to know that Tricia's care ultimately rest on my shoulders (and I have been told the same by many of the Duke staff). You will never convince me (and for very good reason) that a nurse or doctor who has known about my wife for 1 hour knows more about what is best for my wife than I do. It is my right and my responsibility to speak up for her and insure that she receives the BEST care. The best care is almost always in line with what the nurses and doctors order and carry out...almost.

There are only 3 people in this world (beside Tricia) who know as much or more about my wife's medical journey with CF as I do.

None of them were in the ICU with me last night when I talked with the charge nurse about my concerns (have you ever had a wife with a double lung transplant?).

None of them were with me in 7800 on Monday night when the collapsed lung went misdiagnosed for 12 HOURS by an inexperienced doctor (have you ever had your dying wife placed in the care of an intern?).

None of them were with me when the LAST TEN pic lines were unsuccessfully placed at Tricia's bedside (have you ever wasted over 5 hours of your life watching people stick a medal wire up and down your wife's veins?).

None of them were with me when the Endocrine Team came a apologized to Tricia for not listening to her suggestions for her diabetes care after TWO MONTHS of erratic blood sugar levels (have you ever heard your wife tell you every day for 2 months, "they're doing it wrong"?).

Neither were you there.

I was there.

As a nurse, you should know that...the BEST nurses recognize that (and we have had lots of best nurses here at Duke, including during our experiences in the ICU's).

If you are or ever may be a primary caregiver to a family member or friend in the hospital, always know your rights as a caregiver and your patient's rights as a patient. Always speak up when something doesn't sound or feel right. Always listen to the patient when he or she in concerned. Always ask one more question. Always talk to the person who does know. Always trust your doctors and nurses if you don't know what else to do. Always be passionate about receiving the best care for your loved one.

I have already deleted one comment today from somebody trying to tell me to shut up, and I will be keeping an eye out for more.

Thank you.

Nate

I feel so much better now.

376 comments:

1 – 200 of 376   Newer›   Newest»
Jennifer Burgett said...

Amen!

Karen said...

i understand you 100% i have a special needs girl and is in the hospital a lot you are a strong man. keep up the good work i dont know you but i feel that i do i think of you all the time
karen from NJ

Nicole said...

Amen!!

Heather Paulsen said...

You and you alone are your wife's and daughter's advocate!

Nathan said...

I'm sorry that people can't just offer prayers and support. I think you've got it covered... but I am an experienced henchman, so if you need some help roughing some folk up let me know. : )

Keep doing what you're doing. You are giant among boys in this world, as a husband, a father and a follower of Christ.

Lockwoods said...

Very well said! The Lord has given both Tricia and Gwenyth to you. I pray often for you to have wisdom as I know you need it in the many decisions you make day to day with their care.

TN Tyke Momma said...

I agree with you wholeheartedly, Nate. Had our daughter's doctor listened to us or the nurse she may still be alive today. Sometimes I wonder if I didn't speak up loud enough. You will never regret doing what's best for your wife and daughter, but I'd hate for you to ever have to wish you'd done more, as we have. You love them more than ANY doctor or nurse could and God has put you in a position where you are the one who needs to watch out for their best interests so...KEEP IT UP NATE YOU'RE DOING A WONDERFUL JOB! And it's not an easy job you're doing either! May the Lord be your strength. And remember...one day you will answer to God, not other bloggers :)

inchristalone said...

I agree. Who would know the patient any better than a patient's family member. Each case is different, we are not carbon copies. God made each one of us unique. In many cases I have had to speak up. You are doing a great Job Nate! I wish I had you as a spouse! pray for answers for those tough situations

Teacher in the middle said...

Tricia and Gwyneth are blessed to have you! Still praying for more miracles.

Family by Love said...

Thank you for being willing to be so open and honest with us. Most of us have never had to "wear your shoes" in a situation like this and would not know what to do. Thank you for sharing. We are praying for all of you.

Carolyn said...

I'm sorry that you even needed to make this post. Seems like it was very therapeutic none-the-less. You have never asked for advice; only prayers. It is obvious you are well versed and informed about your family's medical care. I will continue to pray for your family!

Amanda said...

You rock it Nate.
Thanks for the updates among all the more important work you're doing.

much love to you and your girls,

from a stranger in Colorado

chmir2 said...

As I nurse, I always welcomed supportive family ! You are doing a terrific job - the patient, medical staff and the family need to be a collaborative team when it comes to care. There is no one who knows more about the patient than the patient and the family. You have my respect of all you have done for your family - both Tricia and your little girl. I am glad there are people like you out there.

Heather and Ted said...

Long time reader, first time commenter...

All I can say is, "AMEN!" You are absolutely called to be the advocate for your wife and daughter.

I'm praying that God will give you the wisdom and courage you need during this journey.

Heather in Michigan

Patty Honeycutt said...

You are so right! I know this from personal experience also.

Sonja said...

Good for you... you shouldn't hold in those feelings, and what better crowd to express them to than us... your faithful blog readers (even though we might be the reason for your frustration). YOU (with lots of help from God) are the reason that your family can be where they are today... your family, not ours (although we really appreciate you sharing your beautiful girls and your thoughts).

God bless, and stay strong for your girls... you are their best advocate.

Tote, Debby, Sammy and Caleb Jimenez said...

I've never posted before, but it really bothers me that people can't just offer their prayer and support. The rest is none of THEIR business!! Besides, God has given those 2 girls to you and it's overwhelmingly obvious that you're doing an amazing job with them both!! Don't be discouraged!
We continue to pray for all of you! May God continue to bless and amaze as we stand in awe of what He's doing in your incredible family!! =)

katielthmpsn said...

I agree with you Nate! I always ask my patients where "they" draw blood from the most. Some look at me like I'm crazy. Why do I ask? Because if you have had a lot of blood work and there is that certain "spot" you would like me to try first it would be a lot better than me sticking you a billion times. right? So I understand what you meant! and if it were me I would want you to do the same thing.

JOHNNY G and MAISY C said...

They are lucky that they have such a great advocate. Anyone who has had an error, or misjudgement with the medical world will understand how lucky they are to have you helping them.

megasam said...

I am sorry that you feel you must defend your standing up for your wife. Thank you for sharing your experiences. You are doing exactly what needs to be done. Keep up the good work.

Mariahs Mom said...

I am totally with you on these thoughts. Praise God for all He has done for you and is continuing to do. Pooie on those who feel otherwise and need to comment negatively. You keep going and we will keep praying!

Tricia :)

Shana said...

Absolutely. Doctors and nurses are human beings and they make mistakes. We have to be advocates in both our own care and for that of our loved ones, we just have to. No doctor or nurse will ever know ourselves or our family members as we do, and I have great respect for the people in the medical community who understand and respect that.

Kerry said...

BRAVO, BRAVO!!!

Amy said...

I pray that God will delete the disturbing comments from your mind as you delete them from your blog! You are doing an amazing, awesome job at taking care of your girls and I commend you greatly! If I am ever faced with such life-threatening illnesses and situations in the hospital that could make things so much easier on me, I only pray that my husband will react JUST LIKE YOU!!!

Michelle said...

I know what you mean. When my son was born in December he was was VERY blue. A nurse that was on the new shift in the nursery brought him to me after his stomach rinse and had removed the extra layers of clothes and told me I had over dressed him. Within half an hour his hands and feet and head were looking so blue that he needed to go onto oxygen and be in the incubator again! And he'd already spent 3 hrs in the incubator that day already.

Niki Nickel said...

You are an amazing advocate for your family, never stop! I was told by my daughter's cardiologist that as her caregiver I should always speak up for her as I have alot more invested in her well being. Thank you for your updates, as always I will continue to pray.
God Bless you.

Karen said...

AMEN Nate! I have a daughter who is chronically ill and I learned a long time ago that I had better monitor her care because no one else will. (Nurses and doctors are fine except they see her for 30 minutes; I live with her) You are doing the 100% perfect God-ordained thing....taking care of your wife and daughter.

Your family has become my family and I'm glad you all are in such good hands...yours and God's.
:-)

Prayers continuing from TN

Paige said...

You GO Nate!! Sock it to 'em! :) Glad to see you are standing firm.

Praying for Tricia, you and Gwyneth.

Jodiferkay said...

You are so, so, so right! I work in healthcare administration and while I'm thankful for the medical care we have available to us in the USA, I regularly see how far we have to go and how much needs to be improved upon. I only wish everyone else understood that they need to advocate for their own care and that of their family members. Don't change your approach one bit.

Emilee said...

I am my own best advocate when I am in the hospital my husband is and I am so thankful for it. Nurses and doctors are wonderful but they are just people too and need teaching and guidance for each individual patient

Christy. said...

After helping my dad take care of my mom for two years while she battled breast cancer and ultimately went to be with Jesus, I know just what you mean! YOU are her best advocate and caretaker. Keep speaking up for her, that's your job!!!
I am so sorry that people feel the need to "inform" you in the toughest time of your life. If they have read this blog at all they would know that you are a kind, gentle, loving guy that is not trying to be a "know it all" but a caring husband!
I am still praying....

Cheryl said...

NEVER let anyone stop you in your efforts for Tricia or Gwen..Never! Never let anyone put you down for what you do for them. They have never lived in your shoes. I know in your HUGE heart you hope they never do.

God bless you and your family.

Jen in Al said...

Beautifully said Nate! you are SO right. praying for the Lord to continue to give you wisdom. thank you for sharing this! jen inal

Lee said...

Amen I agree 100% with you.. I DONT think you sound WHINY at all.... It really saddens me that people cant get in here and pray and listen... I want to hear what you have to say. and STILL PRAYING...

Cfer said...

I'll post it here too! lol!


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."

daynawalker said...

Standing up and applauding you!

Kelly said...

I COMPLETELY agree with you. Being a strong, loving and outspoken advocate for you wife and daughter's care is what you are suppose to be doing. They are blessed beyond words to have you as husband, father and advocate.

mel2681 said...

You are Tricia's "Knight in Shining Armor" and she's incredibly lucky to have someone as caring as you to look out for her!

cojlisa16 said...

I'm not sure what prompted this post, but in a way I am glad it happened because of the response it generated from you. I think so many people are intimidated or inexperienced in their role as a family member of a sick person. You just did an AWESOME job pointing out how important it is to be an advocate and to speak up when you know something is amiss. Maybe some people who read your comments will now have the courage or more comfort in speaking up.

Even out of frustration, God is using your circumstances to bless others. How awesome is that!

P.S. I hope you get some rest.

Momof2bz said...

Good for you Nate! When my youngest was hospitalized I had a difference of opinion with the doctor in regards to my son's care. The nurse on duty at the time reminded me that you are and always will be your childs best advocate. YOU are with this person everyday. To me that spoke volumes about how even professional caregivers know that we deserve a voice. I hope that they are more understanding and actually listen in the future. You are a sweetheart. Continued success in Tricia's recovery and Gwyneth's growth.

Cori said...

I couldn't agree more with this post!! I have a 4 year old daughter with special needs and we've had to learn the hard way that we can't sit quietly all the time!!!!

Praying!!

Erin said...

Thank you for stressing the importance of advocacy in primary caregivers. Regardless of whatever our experiences may be (with people in hospital, with ourselves, or even just uneducated opinions) we have no place in telling YOU what we have learned or how to run the care for your wife and baby. You need to do what is best for YOUR family, and we? We need to keep reading and taking with us a renewed sense of faith, education on CF/Organ Donation/and Preemies, and be thankful that the three of you are allowing us on this incredible journey.

Lauri said...

Another long time reader...first time commenter...you are absolutely in the right, Nathan...and besides that, it really is none of our business! We are hear to offer support and prayers, not advice!!

Dawn Lampkin said...

You are so right! You HAVE to be an advocate for your's and your loved one's health care. Tricia and baby Gwyneth are blessed to have such a passionate husband and daddy who can "get it done!" God bless you all!

Michelle said...

ABSOLUTELY, you are 100% right. I am astounded that anyone would question this. You are your wife and child's number 1 advocate. I am in total ah of you through this journey, you are an angel, an honest to God true blessing. I am constantly thinking of you and your family. God Bless!

Christine said...

Good for you. Some people have too much to say, especially when they aren't in your shoes.

You are amazing to me.

Prayers always.

Lori said...

Amen! Praying for all of you today.

ahelpmeet said...

I think I said "amen" at least ten times while I was reading this post.

You're doing the right thing and don't let anybody tell you different.

Thank you for being so open and sharing your journey with us. God bless you & yours,

Maxime

Kalla said...

I don't believe anyone (even if they had a wife and a daughter in the hospital at the same time) would know what you are going through! So let it all out! Go Nate! :)

prepbarbie said...

Of course we have all been praying for you wife....but I am very offended that you are criticizing the staff at Duke Hospital. As a nurse, I have spent many hours (and tears) caring for your wife. Have you ever been to nursing or medical school? I can't believe you would question the care and intentions of the Duke staff. Do you honestly think another hospital would have provided better care? We all want your wife to have a successful outcome. If it weren't for the incredible medical team at Duke, she wouldn't be alive today. You should thank Duke for keeping her alive rather than looking for faults in their care.

Gila said...

Good for you! Tricia is lucky to have you.

Glad to see that so far, she is doing well. Thanks for keeping us updated.

Angela said...

Amen Brother, I KNOW how this feels. I have had two loved ones I have cared for, one I recently lost to cancer and I agree with you 100 percent. It is so frustrating, you keep on caring for your family-protecting them and loving them. No ONE will do a better job with that except the LORD himself and I know you are trusting him! I think its great that you can vent on your blog as well as rejoice and cry-good for you!

Angela

Elizabeth Preston Cisneros said...

You are so, so right! After my dad's complicated illness and long weeks/months in the hospital (he was also a transplant patient), he began adding a daily prayer for all those patients in hospitals who don't have loved ones surrounding them to advocate, protect, and stand guard for them against carelessness, tiredness, misjudgment, and ignorance of medical personnel. While only a very slim minority would ever mean to do harm or neglect, the patient's well-being is only one of many things on their mind. And at the end of the day, a slip-up might be just a mistake to them, but it could bring the world to an halt for a family.

I have said many prayers especially for you over the past few days (in addition to many for Tricia and Gwyneth), because yours is an awesome and precious responsibility as you care for Tricia and Gwyneth. God bless you.

M said...

Well said. Good for you for recognizing that, doing that, and still respecting those who work with your family. Anyone who is not their own advocate is playing a very dangerous game and judging others for being wise enough to be involved? Is not very wise themselves. I've never had a dr or nurse question me for advocating for myself, or my family. If done with respect to the professionals they appreciate it because, frankly, you should ALWAYS be a partner in your own care. Not just along for the ride. So bless you for doing that for your wife and daughter. Especially when they can't.

Patti said...

Rock on, Nate! Amen! (((hugs)))

siscaboo said...

You go dude. Tricia needs a voice and you are just that. Amen. is all I have to say to that. I have been in your situation as a caregiver, I fought and they had no choice but, to listen. You do what you are doing. You are not wrong.

Prayers for you and all concerned.

Chaotic Reigns said...

As a medical social worker....I agree with you. In order to get the best care for your family you need to stand up for them. I appreciate families questioning because that means extra eyes are watching for mistakes. You go Nate!!

Carey said...

Tricia and your little girl are very lucky to have someone who will go all the extra miles for them. Im praying for your family.

pumkin said...

Excellent! My fiance who has cf and I had to go through the same thing. I'm so glad that Tricia has you to advocate for her and I hope they did take her to radiology for the pic line. Keep doing what you're doing!

pumkin said...
This comment has been removed by the author.
maranatha said...

I appreciate your openess, Nate, and understand boundaries must be set. Anyone who criticizes you has stepped over the boundary. Shame on them. How can anyone presume to tell you what is best for your family? For every negative response, I'm happy that there are hundreds of positives. Keep fighting for your family.

Also, just want to let you know that I will be praying for guidance and strength for you, healing for Tricia,and growth and development for your precious baby girl.

anita said...

well done & well said!

amy smith said...

AMEN NATE! You are the only one who MUST advocate for your family, and you do a great job!

Jennifer said...

I can't count how many times a resident tried to do something that just didn't work for me, and I had to speak up. You're completely right- you know Tricia's WHOLE history, and not just what a doctor can read from a brief history.

GoSuze! said...

Go Nate GO! Some medical staff will take a family member's opinion on their wellbeing as gospel. Some haven't made peace with their egos, and just need a little more time. Keep standing up for your girls, who can't stand up for themselves right now!

Lee said...

I can't help but think about those people who DON'T have an advocate.

Praise the Lord Tricia has such an awesome support system in you, her parents, your parents and all your siblings.

The truth is, even at the best of the best hospitals, nurses and doctors are simply human and make mistakes. To take the defensive when questioned about a procedure or medication is just ego getting in the way. Mistakes happen...they shouldn't but they do. Thank goodness you are right there with tricia and Gwyneth!

JennifersHope said...

Hey Nate, I am an official stalker/prayer person of your family.. I never signed in here before today, Though I have often writen to Tricia on CF.com.

As a nurse who works in a hospital all I can say to you is you are so dead on right... and serious change needs to happen, NO ONE can be a better advocate for a patient than the patients loved one.

I wish their was some way to change the law, because I would be the first one to sign the paper.

The other thing I wanted to say is, you are doing an amazing job. I know how insanely tense a transplant is, under the very best of circumstances, the fact that you are still sane right now, and God's amazing power is so evident in your life, that looking at your families life, their is no way any one can doubt the exsistance of God.
Rant away anytime you want..
Jennifer
35 with CF

Shari said...

Very well said! YOU and only YOU are your wife's and daughter's advocate and caretaker right now. Know I continue to pray for all of you. You are doing a great job Nathan and I commend you! :)

Graham said...
This comment has been removed by the author.
Alanna said...

Written from the heart...you keep on loving those girls of yours and keep fighting for their rights...and my family will keep praying for you.......AH in Canada

Kristen Hamilton said...

You go Nate!!!

Paul and Christy said...

Excellent post and extremely well written. I just went thru a situation with my husband that was way smaller than this, yet he is my mate and I will take care of him. Prayers for strength.
Big hugs from the Sharp's

$$$ Nerd said...

Continuing to cover your family in prayers. So true that you are your family's voice and advocate in those situations. I know this in small ways from helping out with my sisters MS care and her being in and out of the hospital. You will never have regret over the care that you are making sure your family receives.

Jenna said...

I have learned over the past 2 years of my sons life that my husband and i are his only advocate, and who cares what people/care providers think of us , we are standing up for our son and fighting for his life!
graet job, standing up for your family

Club Sammich Cafe -Art,Angels and Miracles. said...

Your doing a great job Nate.
Your right and I know it from a very personal experience.
Prayers going up for your entire Family

carisboys said...

Good for you! I don't know you but I have type one diabetes and am the same way if I am a patient in a hospital- we get to know our "diseases" (hate that term!) like nobody else and I applaud you for being such a wonderful supporter and caretaker of your precious wife! Keep it up! (I am a nurse and diabetes educator too (: )

Story of our Life said...

Amen and then some!!

You are not whiny!! You are a sweet, adoring, stressed to the max, tired and then some more sweetnes husband and daddy who is under a great deal of stress.

She is your wife.
She is your daughter.
You have every right to be just as in control of both of these beauties medical care than anyone else.

((HUGS)))

Sarah M. said...

yep. amen!

I have a 24 weeker. They are the doctors, but ultimately I am her parent. If I won't advocate for her who will?

-Sarah
http://sydney_lou_who.livejournal.com

Erin lee said...

i totally agree with nate. always trust yourself. i had a doctor tell me one time my daughter was only dehydrated when i was telling him that something else was wrong i just new it, and it turned out she was put in the hospital that night for 3 days for salmanella. so always trust yourself

Alanna said...

Amen...written from the heart...you keep on loving those girls of yours and fighting for their rights and my family and I will keep on praying for you and the girls....you are a strong strong man......

Graham said...

AMEN!!
~ becky b

Jen said...

Thank you for this post. I am a soon to be ER nurse. I graduate in May and start working in July. As a new nurse, I know that I have so much to learn and need to use my resources, ask questions, and rely on family and co-workers to do my job. I truly believe that family members need to advocate for the patient's care, and like you said no one knows them better. A nurse who just met a patient knows nothing. I have been reading your blog and following your story and have been very touched. You and your family are an inspiration.

DogsDontPurr said...

I couldn't agree more with what you said. Amen!

I've spent a good share of my time in hospitals this last year caring for my boyfriend (diabetic, heart attack, double bypass, complications, etc.) Most of the time the nurses didn't even know how to work his insulin pump, or they would give him an IV that had sugars in it. And of course, he's too drugged up to make decisions for himself. So I had to be there and instruct the nurses....and basically become a nurse.

So I know exactly what you are saying. You, who have lived with and loved this woman for many years non stop, know wayyyy more about her care than a nurse or intern that stops by for a few minutes or seconds. You're the best caregiver she can possibly have.

((Big Hugs)). Prayers are continually flowing for you here.

Amanda said...

I agree and you DON'T sound whiney.

Mommynurse said...

Too often the medical team/staff get caught up in their own agenda. If only the medical team truly understood that patients and caregivers often know what is best. Unfortunately, it is up to the patient and the caregiver to advocate for what is best. Eventually, you'll find someone to listen. As a nurse, I want to apologize for your experience. Although you've had some great nurses, in general, you should feel the medical team hears and supports you. I hope it gets better.

marcia said...

You are absolutely right on, Nate...and this from a nurse with over thirty years critical care experience.

Becca said...

I'm not sure I can say anything that hasn't already been said but I really wanted you to know that you have our love and support!!!

I totally agree with what you had to say. If they are good health care pros. they will accept that you know her best and take your input seriously. If not, well, you need to know THAT too to protect your girls. Those kinds are the ones that make the most serious mistakes in my experience because they just CAN'T be wrong.

Anyway....praying as always.

Sonja said...

You should be a personal advocate for MANY!!!! You have the talent of getting the job done and being tactful and caring at the same time.

AMEN Nate. Your wife and daughter are very blessed to have you speaking on their behave. My 19 year old daughter has been my advocate at the hospital many times since she was 12 years old. I believe some people just know how to take care of those they love.

Great Job. God Bless. Keep doing what your doing. :)

Sending prayers, blessings and encouragement.>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Donna said...

I've been there to a certain extent. I remember how upsetting and overwhelming it was simply getting a nurse we didn't like when my mom was in the hospital. Being a patient in the hospital is hard especially when you're as fragile as Tricia and Gwyneth. I understand the flip side, too, though, because I'm a nurse. It's hard! If you work at Burger King and make a mistake, someone gets the wrong sandwich. If you're a nurse or doctor and make a mistake...well, you know. The best we can do is pray and trust God. And keep advocating for better care in hospitals:)

The Burgess Family said...

good for you sticking up for your wife and your child. G.R. can't even speak and Tricia can't remember a whole lot right now... if you don't speak up for them, no one will. GOOD FOR YOU!!!!!!!!

Kim said...

Well said Nathan!! I was going to applaud your advocacy earlier!!

The Case Family said...

Go Nate! We are your cheerleaders and we say
"Nate Nate He's our guy
He knows what's right and he's not shy"!
Cheesy I know! But I just wanted you to know we are here and we support you whole heartedly!

Goodboy Norman Featherstone said...

You are 100% correct. My grandfather passed away last year due to negligent care in the hospital. Had the family questioned the doctors more closely, perhaps it could have been avoided. You should be the driving force in your wife's and your child's health care. Anyone who would say otherwise should keep their comments to themself, because it's your family - not theirs.

Casa de Castro said...

Nate -

While I'm incredibly sad you've had to even address such negative comments in what should be a forum for support, I am also THRILLED beyond words because you have shown us a beautiful picture of Jesus. Husbands are called to love their wives as Christ loved the church. He DIED for the church, His bride. Thus loving your beautiful wife ABSOLUTELY includes being her advocate, and yes, maybe even her warrior hero if necessary. Like Jesus did for us, you provide Tricia with hope that her very best interest is your primary concern. Oh, that more husbands would love their wives as you love Tricia and put hands and feet and action to that love!

Working in the healthcare industry, I know how critically important information from family members can be. Often the patient is unable to give the info at the moment it is needed, and an excellent historian in the form of a family member is the next best thing.

Thank you for showing all of us - yet again - what it means to love others sacrificially and unconditionally. And by the way, you've never sounded whiny, but even if you did, you certainly have the right to be. You're teaching all of us so much by your example.

Praying without ceasing here in Texas for all of you.

Ben & Kara said...

Nate:
I am the mom of a 23-weeker. I have been following your story for some time, but have never posted. I think you are 100% correct that you are the most important advocate for both Tricia and Gwyneth. You are the only one who knows her history, knows the holistic picture rather than the picture seen by a particular specialist focusing on a niche of her care, and the only one who has her needs above every other concern (legal, policy, etc.).

When I start to get frustrated about some particular therapist or nutritionist or specialist commenting about our son's delays and disabilities, our pediatrician always reminds us to look at the whole picture of care and of our son. You are so right that are the one who can do that for Tricia right now.

Kara
(Mom to Truman, 23-weeker born 8-8-06)

Em said...

You Go Nate!!!!!

beth said...

Well put!
I understand you are the best advocate so don't ever back down.
Unless someone else has waled in you shoes in any way the hospitals today are run by what we call humans. They are known to make mistakes, and not always make the right decisions.
Keep up the excellent work!!!

Lee said...

p.s.
For those nurses that have posted here ~ imho, Nate needed to vent some very pent up frustrations. I didn't personally get the impression that he is unhappy at all with tricia's care...simply frustrated about some very specific incidences regarding his advocacy for her. I cannot even begin to understand what his mind, body and spirit have been through given the gravity of his wife's illness, the gravity of his baby girl's micro-preemie condition. He (and THEY) are going through more in a relatively short amount of time than most people will ever see in an entire lifetime. I am surprised his venting didn't come sooner, to be honest!
From what I have read he (and their families) have been nothing but supportive of the Duke staff and entire hospital. From the nurses to the doctors to the aids to the terrific food in the cafeteria.
It is true that nurses do not get enough credit for what they endure but surely when you went to nursing school you were versed in patient AND family care and were taught to expect some of this type of venting, particularly in this very life and death scenario.

Monika & Jim said...

I commend you for this post! Ultimately it is up to us for our care in and out of hospitals. I would NOT be here today (due to a Pulmonary Embolism) that a nurse tried to tell me that "I have gas." It was due to my husband and I continually telling them that something was wrong. I know my own body and how it works.

Again, always praying for you and your family.

Erika said...

Nate, I'm so sorry you had to deal with people's unnecessary & uncalled for comments today! You have enough on your mind for goodness's sake! I think you wrote an excellent response.
Praying lots for you all!

beth said...

by the way that was walked in your shoes not waled...ooops!
:)

Angela R. said...

Nate, as someone who lives with CF and the hospital life, i would have to agree with it all. After all these years, you live and you learn. There is NO ONE who knows you better than yourself or the person who is constantly on the ride with you. You have to be your own doctor and nurse. If it wasn't for my own knowledge and my mom who speaks for me when i cant, who knows what mistakes would have been made. So there is nothing wrong with speaking up because there is NO doctor or nurse who will ever know Tricia better than you!! I give you so much credit, stay strong!

My Prayers!!
- Angela

Carmen said...

I think it's sad anybody would write anything negative. I think your family is great.You, Tricia, and Gwyneth have been through so much. I am going to register to be a organ donor online as soon as I finish this. I think everyone should. I hope Tricia has had a good day.

Robyn said...

Good for you Nate - and I am a nurse.

Jill said...

Amen! Praying for your family.

Candace said...

Well said. You are your family's best advocate. You are the caregiver and that is your job, to fight the fight.

I have had to learn this all to well. Watching as my one year old daughter get stuck six or seven times to get blood just because they don't want to listen. Demanding a certain person to place an IV, because they listen. Demanding that the PIC line be placed in Radiology because you want it done right the first time. Demanding an MRI when no one was getting any answers.

I was very soft spoken prior to having my daughter. I am still learning to speak up and be loud at times.

Your right, the good doctors recognize that you are the best resource.

Keep it up!!

Grammie said...

I so understand.

Unless someone hasn't (fortunately) had the experience of having a loved one in a hospital...the need to be the patient's advocate is a definite part of their care. It is a must.

Keep doing what you are doing....loving your wife and child so much that you want the very best for them.

Take care....

Julie Stanton said...

I'm really not sure why anyone would criticize someone for being an advocate for their family member's medical care. Nurses and Doctors are wonderful, but not perfect. In fact, some I have come across in my mom's medical journey have been down right neglectful and selfish, resulting in some severe and preventable complications. The worst of these experiences resulted in her having a stroke a few months ago. Had I been more forceful in being an advocate for her, that may not have happened. We are lucky she lived and recovered. Many people die or are injured by negligent medical care every day and to think otherwise is ignorant. Nathan is an incredible husband. If he DIDN'T want to be Tricia's advocate, that's when I would worry.

weavermom said...

Amen.

(And not whiny at all. :) )

Tyrone & Bailey said...

i am floored that there was even a need for you to write this post...i am so thankful that you have been so open with us and allowed us to share in your journey and having the privilege of praying for all of your family.

since it had to be said, though, i am certainly glad you did, and i think you said it exceedingly well. your example and tricia's has been such an incredible blessing to my walk with God, and the two of you have taught me so much about having REAL faith.

i was once in a position in a hospital where i needed someone to be my advocate....and they were. it was such a blessing to know that they were there, keeping an eye on everything, having been with me through everything that i had been through.

you are doing a fabulous job, and i really hope that no more negativity comes your way. good grief! (and God bless!)

~bailey~

Brown Eyed Girl said...

Amen and AMEN. After some experiences with family members in the hospital and poor family doctor care I am a huge advocate that we are our own best advocate. I commend you on not setting idly by and letting someone who thinks they know what is best for Tricia do what may not be best for her. You are right in sticking up for her. I would want my husband to do the exact thing for me and I would do the exact thing for him or any of my family members. Thank you for being exactly who you are. God put the two of you together and I believe He has done an amazing thing. The two of you are an inspiration to thousands of people. Keep being who you are. Thank you for sharing your feelings.

Sarah said...

I'm mostly a lurker, but this post struck a cord. I was often criticized for my advocating while my son was in the hospital. After 8 months, when we went home, the staff were all glad to see my backside (lol) but every single one of them told me I was a helluva an advocate. I don't care what you have to do to advocate for your wife or child, you just do it.

boltefamily said...

Your family is very blessed to have such a passionate advocate!

Danielle in MO said...

your blog is a blessing... to oh so many - I don't have CF, no loved ones have CF, I already had been listed as a donor, even on the bone marrow registry.... BUT your Faith is what keeps me totally plugged in... ok and Gwyneth is so adorable - and Tricia - she is is just AMAZING... but the point is your right.... we should feel blessed that you want to share this amazing story with all of us... and I have to say if these people who can't stop judging don't "get off the boat" and they ruin this for all of us who so look forard to your posts... I will be on a manhunt! :) Glad to hear things are still going well..... will still keep praying!

go4hockeychick said...

I, as an ICU employee, applaud you on your actions with your wife's care. We do get some families who bother the crap out of us by being overly involved...however, those families usually also have NO idea what they are talking about either.

You are knowledgeable, and that is what is important. MOST RN's and other healthcare professionals would respect that.

shaninvb said...

To the offender of Nate, Tricia and Baby G

Pro 17:28 Even a fool is counted wise when he holds his peace; [When] he shuts his lips, [he is considered] perceptive.

Maybe you should read this before posting next time!

65rosesqueen said...

Nate: I am a CF mom and have always been my daughter's advocate and always will. I am the first person who alerted the staff when she became septic, and the first person to ask for help when she went into pulmonary edema. It doesn't matter if all she needs is simple things to make her more comfortable, she deserves to have me speak up for her. Her first CF dr. told me to tell her new drs. that they have many patients, and I only have one, so I have the time to research many new strategies. That way, no one is offended when I suggest a new treatment plan. You keep up what you're doing and ignore anyone who will never be walking this road and could never understand it. We are praying for all of you--we know that the toughest road is now. Take Care, The Payne's

katrenia1 said...

This is my first post-I completely understand. I also have a special needs daughter and if is not for those, who care for our sick day in and day out, our love ones would have to endure more pain than they already do. People who have never been in a position like that have no right to judge. What you did was right. Nate you are a strong man and although I have never met you I feel like a good friend. I will pray that all of the emotional trauma will come to hault for you and your family and Tricia and Gwenyth will be strong enough to go home soon.

amanda said...

RIGHT ON THE MONEY!!!!!!! How well do I know from my experiences as a patient and an advocate, and I feel for these patients that have no one at their bedside! Great Subject and Great Post that needs to be posted in every medical facility all over the world!

davitajo said...

I've had some less than positive experiences with medical staff that were caring for my parents...and I had decidedly less Christ-like, graceful reactions...so kudos to you for responding in a way far better than what I did. It's easy to tell from your words that you have a lot of respect for Gwyneth and Tricia's doctors and nurses. I know they appreciate that.

Danica Lynn said...

You don't know me. I'm a stranger to you, however I have been following your wife and your daughter's journey. I'm amazed at your family's strength and I pray for you all daily.

This post touched me as I recently lost my mom to lung cancer. My mom spent the last three months of her life in the hospital. I 100% agree with you. You are your wife and daughter's caregiver and you know what's best for them. We constantly spoke up about the care of my mom. I truly believe that by my family acting as my mother's caregiver (my parents are divorced) that we were able to prolong her life just a little longer. I'm sorry that people are speaking out of line when they most likely don't know you.

May you know that your entire family has touched the lives of many people. My thoughts and prayers will continue to be with you all.

jntzmom said...

Good for you Nate...I am a nurse, I wish more people advocated for their family members. Not one of us in the medical community (or anyone for that matter) knows everything about everyone! Just as all people are not alike. Each one of us is responsible to provide the best outcome for another, no matter what their role..be it a healthcare professional or family member. It's a responsibility everyone needs to take at one time or another!

I've been following your blog since right after Gwyneth was born. You, Trish and Gwyneth remain in my prayers!!!

Erin said...

I totally agree with you. You need to speak up for Tricia and Gwyneth especially when they can't do it for themselves. I don't know why people feel the need to criticize instead of encourage you. Criticism is the last thing you need now. You need people to be supportive, encouraging and keeping you and your girls in prayer. Keep up the good work taking the best care of your girls and the rest is up to the Lord.

Tracie said...

Nate,
Bravo for defending your wife and standing up for her needs. I'm pretty sure you took vows to do just that. Your just keeping your vows- and doing a splendid job of it!

I've had the experience of 2 1/2 years in and out of NICU with my nephew who struggled and eventually died of Spina Bifida.

My own daughter was in the NICU for 10 days- nothing nearly so severe.

And I know that there are times when in spite of the many many qualified and caring health professionals, there are some who miss it- for whatever reason. There are times when the spouse or parent knows best.

the*4*of*us said...

Amen!

Debra said...

You have all of my support. Not that you need it, but you have it!
Aspiemom

Bobbi said...

You are 150% RIGHT!!!!! You have to make sure that you wife is getting taken care of...if you have a concern then chances are it's for a good reason. I am sorry that there are people that don't understand WHY you HAVE to advocate....you are all in my prayers.

Bobbi said...

You are 150% RIGHT!!!!! You have to make sure that you wife is getting taken care of...if you have a concern then chances are it's for a good reason. I am sorry that there are people that don't understand WHY you HAVE to advocate....you are all in my prayers.

Susan said...

Good for you, Nathan! I'm a former Duke ICU nurse (8200) and I fully support and endorse everything you've said. Even the very best nurses sometimes forget that the family does know best! Keep advocating for your girls!!

GAV said...

Amen, your wife and daughter are very lucky! My thoughts and prayers are with you daily. Thank you for letting us in your lives. God Bless

Jen said...

Nate I'm glad you posted your feelings about this! Tricia and Gwyneth are lucky to have you!

K said...

Amen! I hope this message gets through to people! Thank you, Nathan, for clarifying this. I'm so sorry that you've had negative responses from people concerning the care and protection your provide for your family.

I am a doula. People hire me to, among other things, protect them, during their births, from routines and procedures that are not necessary and can be harmful, and to support and advocate for them when they are speaking up.

The United States has the best medical resources, but ranks at the bottom of the list of industrialized countries for using them. We are at the bottom of that same list for over all patient care, too. The best we can do is exactly what Nathan is doing and encouraging us to do.

The best example of a medical mistake right now in the news is to look at what happened to Dennis Quaid's twins. All it would have taken to prevent was for the nurse administering the drug to read the label on the bottle and for the drug manufacturer to have labeled the medication more clearly.

Kupiec Baby Blog said...

You are 100% right!!! Hang in there. Tricia and Gwyneth are so lucky to have such an incredible man to care for them. God Bless you all.

Erin said...

Nate-

Your girls sure are lucky to have you! Praying & thinking about all of you since I found your blog [not even sure how] yesterday.

God bless you all!<3Erin

nopeanutsplease said...

The audacity of some people is what I find mind boggling. No one can understand what you are going through. I doubt very much that there is another person out there whose spouse just received a major organ transplant while their preemie daughter is in the NICU of the same hospital.

I feel so bad that you have to endure such cruel comments from people you don't even know.

Please know that while the majority of people will always show compassion, there are the select few who don't have compassion for themselves let alone others.

You and your girls are in my prayers.

Amy

Shann said...

I'm going to second (or maybe one hundred and second) the AMEN!!

Melody said...

Nathan-

You're doing an amazing job of taking care of your girls. You're doing exactly what you're supposed to do and anyone that says other wise is un-educated about how to care for a loved one. There is always someone that wants to "stir the pot". Don't let these negative people get you down or make you think you're doing something wrong.

God Bless you and your sweet family,

Melody

Nora said...

You are awesome and you are doing an amazing job and it is FAR better to step on some toes and not be awarded Mr. Congeniality than to let the care of your wife or daughter be compromised.

Whether we like it or not, sometimes we or our family members are just a number to doctors and nurses and sometimes they need to be reminded they are someone's beloved wife and mother and have specific needs.

We are praying and appreciate the updates.

Rebecca said...

Nate, thank you for sharing that. I'm glad you feel better.

As I may have said in an earlier comment (or it might have been on your dad's blog), I can't even imagine.

But I'm happy to "walk with you" on this journey as much as you're willing to let us.

I'm still praying... for all of you.

Ellen said...

I went away for 48 hours and came home to a miracle! I am so excited for Tricia's new lungs and am praying for the next days and weeks to go well. Thank you again for sharing so openly that so many may be educated and encouraged.

Mathis Family said...

Nate,
I have been keeping up with y'all's story for some time now and have not commented so as not to bother, however this is one topic that I am passionate about. As a former healthcare professional turned college professor I have always held onto the idea that we are the ones who are in charge of our own medical care, regardless of the letters that may or may not exist after our names. Since becoming a mom of a child with not serious issues, but medical problems nonetheless, this has become more and more obvious. The long and the short of it is that medical staff are employees of the patient (if you want to just go ahead and get down to the jist of it) and we, as patients, have the right to agree to and refuse treatment or to dictate how that treatment is given. Kuddos to you for standing up for your love! If only more people could do that then maybe healthcare in the country would actually improve!

lizcannon said...

a lot of people have said it, but AMEN BRUTHA

kidsworld said...

I realized after the birth of my first child (I was 22) how difficult it can be to challenge a medical professional. I had never had the authority over anyone but myself prior to her admittance to the NICU. It took alot of guts and encouragement from family and friends to stand up for my daughter to the dr. and have her transferred to our local children's hospital. To this day, I do not regret my decision and I often advise the same for friends' in a similar situation. I've learned over the years that doctor's are advisers and only you know what's best for you. You have had a great amount of experience with Tricia's history and knowledge. They really should listen to you. Most people don't know that they can "step-in". You are a wonderful advocate and I'm grateful that you're teaching the 100,000 hits that they can and should. If anything, the doctors and nurses know how much you care!

You're awesome!

refreshing in ohio

ronchristymyers said...

Nate, Tricia and Gwyneth,

Thanks for sharing your heart and family with us. Your story has encourage so many people over the last several months. I want to say you have done a wonderful job looking out for Tricia and Gwyneth. I have a special needs child that is trach/vent with a rare MD condition. You have to stand up for Tricia and what you think is best for them. Know there are really alot of people praying and encouraging you through this whole thing. Our thoughts and prayers are with you.

David, Ashley and Noah said...

Thank you. I've never thought that you pushed your feelings under the rug on your blog and I'm glad that you came out with this. As a nurse, I thank you because one of my worst fears is that family will withhold something just so they don't "step on someones toes". As nurses, we are there to be the patient advocate, but most of the time, family can and should also be doing that. It actually makes our job easier and much less stressful when the family is there and upfront about things. As a nurse, I thank you, because really, we (most of us) just want to do what is best for the patient and have everyone be comfortable and confident in their care. I've been on both sides (my husband has crohns disease and has been hospitalized several times) and its hard to speak up sometimes but I'm glad you did. BTW, you don't sound whiney...you sound like a husband taking care of your wife! Keep it up! Oh, and still praying!

Jen said...

I have only been following your story for a few days, but I can see that you are a man of God. Thank you for being willing to share your joys and hurts, to benefit others. The world needs more men like you! We are praying for Tricia. :)

Jo said...

As a mother of a special needs child with Asperger's Syndrome, which went "misdiagnosed" for 9 years, I send mucho kudos to you Nathan! Those of us who are the main caretakers of those who are in need DO know a few things! I agree that we should be willing to go to bat on their behalf, especially when they are so unable to do so for themselves! I agree also about how bothersome it is to hear from those who only have a soapbox to stand on instead of life's trials & experience...kinda like a motherless child berating a mother of 5 for not allowing candy before supper...afterall...if it makes the child feel good, why not?! I guess that's where the cliche' comes from...MOTHER knows best! Anyway, praying for you all still & rejoicing in the needs met by our loving & merciful God on your behalf. We know you are so overwhelmed right now & will be still to come, just know that for the handful of "know-it-all jerks" out there...are millions of us who love & pray for you all & admire you for always going to bat for girls. And for being so humble as to still remember God & his grace...thanking Him for everything.
Chris, Jo & the boys in NC

Beezer Mom said...

I completely agree with every statement you made. Drs and nurses have a job. It's just that...their job. Sometimes things get overlooked or go wrong. You have to be there every second you can for you loved one!

Ragamuffin said...

Having worked as a Peds ICU RN for 13 years I've spent a lot of time with special needs kids and with many CFers, too. In my experience, the moms & dads who were available to their kids (and, sadly, many kids didn't have their parents with them despite months and sometimes years in the hospital) almost ALWAYS were able to pick up on the smallest signs of their child's health going bad. When I listened to them I was able to be of help to the child and insure the downward course was as slight as possible. However, if I blew them off (and early in my nursing career I did this too much) then we usually had a disaster on our hands. I learned quickly the family of a special needs person is much more equipped to notice these sometimes infinitesimal changes and I needed to listen to them. They weren't always right but the vast majority of the time they were.

Anyway, this is my way of saying hang in there and keep on keepin' on. Because you've opened yourself up so much (for which I, for one, am so grateful) you will get stung every now and again with hurtful comments. As your stress increases so will your sensitivity to these comments (and sadly the comments often seem to come to kick you when you're down). YOU know you are doing your best and fighting for those you love, so try not to be too hurt or angered by the stupidity some persons show.

I hope my last comment wasn't offensive to you. It wasn't intended to be. May you know a sense of the Lord's presence and His peace through the night tonight. Gwyneth and Tricia are in my family's prayers.
In our Lord Jesus,

Debbie

momma2monkeys said...

Amen!!! You are the best advocate for yourself or your family! We learned the same thing when our daughter was in the nicu. We were uncomfortable with a nurse we had one night and rightfully so! We were by her bedside all day/night leaving only when they made us to go eat something or sleep for about 6 hrs. So we watched and learned how the nurses were taking care of her. SO one night when a nurse came on..she wasn't doing the "normal" things with her..it concerned us- when we left I called back in to ask the charge if they could keep an eye on her- they agreed. (but brushed me off) We came back in the next morning and our daughter had a collapsed lung! It was a total set back! That same nurse was scheduled for a couple more nights and I stood ground and asked for a change. another nurse we befriended agreed her care was related to the collapse. SO who knows what would have happened the next nights if she was caring for her!! with our son a couple years later, my husband even showed the nurse HOW to use the CPAP! So never for a second sit back and watch...always speak up! :)

Good for you!

momma2monkeys said...

Amen!!! You are the best advocate for yourself or your family! We learned the same thing when our daughter was in the nicu. We were uncomfortable with a nurse we had one night and rightfully so! We were by her bedside all day/night leaving only when they made us to go eat something or sleep for about 6 hrs. So we watched and learned how the nurses were taking care of her. SO one night when a nurse came on..she wasn't doing the "normal" things with her..it concerned us- when we left I called back in to ask the charge if they could keep an eye on her- they agreed. (but brushed me off) We came back in the next morning and our daughter had a collapsed lung! It was a total set back! That same nurse was scheduled for a couple more nights and I stood ground and asked for a change. another nurse we befriended agreed her care was related to the collapse. SO who knows what would have happened the next nights if she was caring for her!! with our son a couple years later, my husband even showed the nurse HOW to use the CPAP! So never for a second sit back and watch...always speak up! :)

Good for you! I am glad you opened comments on this too!

Brooke said...

completely right! You are doing a terrific job (from what I can see) You are of advocating for your wife. Having been at my husbands bedside while in the hospital on several occasions I know that you have to speak up and do what is right for the one that you love because the doctors and nurses are not always right. They do a great job but they are busy and stressed and they can always use our help! Keep taking great care of your girls as you are!

The Chambers Family said...

All I have to say is way to go on advocating for your wife! I could probably write quite a long post, but I shall refrain, of hospital situations with both of our children, that had we not been there, voiced our opinion and concerns, our children could have been hurt or setback. One case was so serious that it could have led to our preemie son's death. SO...like I said, way to go! We are praying for you and we will continue!

careysue said...

Nate, You are doing the right thing, you are your wifes and daughter's spokes person so to speak. Their voices!

Our son has cf and has been hospitalized a lot this past winter, we too have to tell doctor's and nurses that don't know him and his situation, sometimes, how to do procedures on him.

Thank you, for your straight forwardness and honesty. We need you, we are all learning many lessons through your life. Please know that the large majority of people that read your blog, understand and are here because we care.

Prayers coming your way.

Love from MI

Kat said...

Don't let the naysayers sway you. For one, you have FAR more to worry about right now than narrow minded people who want to give you grief.

Secondly, I lived in an ICU with my own son and you HAVE to be pro-active in their care. Thankfully our medical staff was very much in favor of parent-led medicine, they knew that we were with our loved one day in and day out and would frequently ask US about things.

At the end of the day, it's YOU that has to sleep at night knowing you checked, double checked, and triple checked your wife and daughters treatments. I know how exhausting that can be.... I commend you.

The people who conemn you for this likely haven't spent time sitting in an ICU watching monitors and cringing at the next "ding", asking everyone who stepped foot in the room what this or that meant. I know by the time we left the hospital I was near qualified to do their jobs, and you've been at this longer than I was.

Keep on keepin on my friend

God Bless,
Kat

Amber said...

You're amazing, Nathan. Thank you for being such a man of God and example, not only for your wife and child but for all of us, as well!

Remember He has given us a High Priest who is OUR ADVOCATE! Be encouraged! :)

Amber

cmziall said...

This is a great post, Nate! I'm with you. . .you can NEVER ask too many quesetions! God has blessed Tricia with bringing you into her life to care for her and stay by her side in good times and in bad. Thanks be to God for you!

God Bless,
Michelle in MO

jennifer said...

Nate, this is my first time posting here. I have been following along your family's journey and praying for all of you. Good for you for being such an intelligent, caring and strong advocate for your wife and daughter. As thier primary care giver it is your role and the role that God has placed you in. It sounds to me like you are doing an awesome job. I have a cronically ill, medically fragile child and his father and I are his advocate. We are also never afraid to speak up or even insist on things being done a certain way, etc for him. No one knows this little boy or his needs better than us. Keep up the good work Nathan!!!
P.S.
sometimes we humans are just too darn quick to speak without thinking or understanding. I would encourage posters to think about the saying, "until you've walked a mile in my shoes" before being so quick to offer your input at this critical time for this family.

Jennifer Graham

april said...

blogs are great for venting! you are doing EVERYTHING you can and more. trust your own instincts! (Always)

Jennifer said...

I think that totally needed to be said. Anyone who tries to judge you has no idea what you have gone and continue to go through, and hopefully they never have to. All you can do is keep your head up because there are always going to be haters out there, and you just have to ignore them. and tell them to lay off the haterade. (kind of like gatorade, but much much worse). You and your family are in my prayers!

Jan said...

So true, Nate! Perhaps we should insert in the marriage vows, right after "in sickness," the parenthetical phrase ("when I will advocate for you if need be"). Same thing for Christenings, Baptisms, baby dedications.

Keep up the good work!

sebrown1126 said...

I have worked in hospitals for 15 years and my husband is a new nurse. Both of us are STAUNCH proponents of having a family member be a strong, visible advocate for their loved one. We are advocates for our children, each other, and another family member.

Yes, nurses and doctors have expertise and are professionals. However, that absolutely does not diminish our roles as advocates for those we love.

We all know our own bodies best, and I believe everyone needs to be confident when working with their physicians/nurses, a lesson I've learned unfortunately through very negative experiences.

Your love for Tricia, and willingness to get totally involved in her care, is admirable...and necessary. I highly commend you for your passion in this area, and am glad you opened up this post so I could voice my agreement with you.

So glad you are staying strong in your beliefs re: being Tricia's advocate. You are absolutely doing the right thing.

Sara (Janet's friend)

Thia said...

Thank you so much for this post! So many people just make assumptions that b/c the dr has a degree, because they are the dr, that they know better. It isn't always the case. So many mistakes could be avoided if people had the attitude you do. Your wife and daughter are blessed in your concern.

Mom Of Five said...

No one can explain someone's "gut" feeling... but you know in your heart of hearts what is best for the people you love. No one is perfect!! Not even a doctor or a doctor at DUKE. Everyone can and have made mistakes. It takes a strong man to stand up for what YOU believe in. You are that strong man. You are Tricia's voice, you are Gwyneth's voice. So scream if you must... at the top of your lungs to be heard. You are an amazing person. Your journey, though personal, teaches us so much. To love, to help, to teach.... I could go on and on. God bless all of you. I live here, nearby in Raleigh. Anything you need...ANYTHING! Please let me know. Jenny

Sonia said...

I can completely understand! My niece is a special needs child and if we didn't stand up for her who would? You have every right to stand up for your wife and your daughter. Still praying for all of you.

RoseGirl said...

Okay...so I posted this under a different section - meant for it to be here...

Way to go Nate...

I know that you are not looking for kudos, but 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 coiugh that PICC line out of place and up into my jugular vein. For the next 13 hours, I could not ghet anyone to belive 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, "trying to get attention!"

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 sucha 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!

Blessings,

RoseGirl, Southern CA

Dennis & Leesa said...

Amen Nate!!! Keep being an advocate- I work in the medical profession and absolutely agree with your post- you simply know the most about your wife's health and are absolutely doing the best for her and your daughter by speaking up!!!!!! Again, I say, AMEN!!!

petebon5 said...

Nate..my heart is in my stomach @ this point! you have endured so MUCH in your aproximate 3+ month stay there @ Duke. o man, i so happy that Tricia got her gifts of life when she did esp after going undiagnosed for 12 hours w/ a collasped lung. holly molly Nate. WOW! is what comes to my mind. i am glad your able to vent on the wonderful page called confessions of a CF husband. to heck what people post. you got it out and now i hope you feel better. have a good weekend. read your page and updates soon! thanks for posting Nate. YoU RoCk

petebon5 said...

Nate..my heart is in my stomach @ this point! you have endured so MUCH in your aproximate 3+ month stay there @ Duke. o man, i so happy that Tricia got her gifts of life when she did esp after going undiagnosed for 12 hours w/ a collasped lung. holly molly Nate. WOW! is what comes to my mind. i am glad your able to vent on the wonderful page called confessions of a CF husband. to heck what people post. you got it out and now i hope you feel better. have a good weekend. read your page and updates soon! thanks for posting Nate. YoU RoCk

Darlene said...

AMEN! Been there.

You living your role for God's glory. Blessings on you & your lovely family.

Rosie said...

Good for you duck good for you!

"duck" is a term of friendship and endearment in Yorkshire UK, so please don't be offended. You are doing one heck of a great job!

Rosie

LisaP said...

Nate - Again, you amaze me by your prose, your convictions and your love for your girls. Everyone knows that not everything that transpires in the hospital comes from medical books. Sometimes His spirit speaks to you and you just know in your heart that something is not right. Continuing to pray for healing and strength for you and your girls.

Kristina said...

Nathan, I am a nurse and I applaud you 100% for advocating for your wife and daughter. Nurses should also be advocates for their patients, and that comes from addressing concerns of the family as well as the patient. I have thought many times while reading about your journey how fortunate Tricia is to have a bedside advocate like you. God bless you!

The Dukes Family said...

I'm a nurse, and you're completely right. You are your wife and daughter's very best advocate ... say anything you need to or want to. If you hired a plumber, you certainly wouldn't hesitate to tell them what you want done ... the same goes for a doctor or nurse. It may not always be possible but you can always speak up.

J & K said...

Keep fighting for what you know is best for your family. I think most people who read your blog agree with you. Plus the very special ones who really matter (Tricia, Gwyneth and your extended families etc...)DEPEND on you to have the role that you do!! You are doing what is in the best interest of your family. It is sad that people have been giving you a hard time. And if you need to vent about it on your blog or wherever, you should feel totally free to do that!!!

jamie said...

Nate, As an RN I agree with you 150%!!! One of the lessons Good Docs and Good Nurses learn is the pt's family knows that pt. far better than we ever will!!! Good for you for advocating and SHAME on anyperson criticsing you for it-SHEESH Now I too feel better....;)

God Bless You
Jamie in Texas

LovinTimInMi said...

I couldn't agree more!!! The family often "knows" what is best for their loved one a bit more than the dr or nurse that has just met them. My grandmother fell & broke her hip this past Jan. The ER dr tried to send her home, never mind the fact she couldn't walk & the pain was excruciating, if it hadn't been for the family insisting she stay until an orthopedic dr could look at the xrays who knows what would have happened...because infact her hip was broken.

All that just to say keep up the great work of advocating for your girls!!!

Julie said...

AMEN & AMEN NATE! I am a RN, I have worked with liver transplantation, CF patients, and oncology over the years. But truly I gained my greatest knowledge as a Nurse from my patients and their family members, not from a text book. I have also spent quite a bit of time on the other side of the bed. With my son in NICU and also with a son with MD and multiple hospitalizations. I am a daily reader...okay so I log on more than once or twice a day. (smile) I pray for you & your family several times a day as do my children. I can only stand up and applaud you for not blindly & foolishly handing your wife & daughter over to the hospital staff. I don't know how any Physician, Nurse, or patient could think otherwise.

God Bless
Julie

Darlene said...

Oops. Gotta modify my comment - I haven't been in your shoes, but I know about advocating to med professionals for a loved one in hospital who cannot speak ...your role as advocate, husband, father is yours alone. God-given. Who can argue?

maggie said...

Those are the truest words ever. This is your wife and your daughter. We are bystanders reading whatever you choose to share, but otherwise, actually, it's none of our darn business. Your wife and daughter aren't depending on us to advocate for them. They are depending on you, and I am thrilled for them that you've got their backs because I can't imagine anyone being more committed than you are. I applaud you, and I'm glad you wrote this and have the perspective you do.

allison said...

I can understand how you feel. After my heart and lung tx, I (and my father) had to advocate for myself many times...especially since I was 17-21 and in a childrens hospital. Dont let anyone make you feel in the way because there have been many times that if my dad (an RN) hadn't been there, I don't know what wouldve happened. Still praying for you guys!

jen said...

I am thankful that you do not let the "small minority of mean people" stop you from sharing your story. It just makes me sick to think that people can be so cruel during your toughest days. You do not have to defend/explain your choices or risks to anyone on here.
Your family has touched my heart and I will continue to pray for you (and the 'mean people'). :)

Jen in AZ

theragan3 said...

The Father has entrusted these two precious girls into your care, as a father and husband. You alone know what is best for your girls and any medical professional who questions your motives or makes you feel like you are out to lunch should check their ego.

Not many of us HAVE been to medical school - but that doesn't mean that we don't know what we are talking about.

My boys were in the NICU for 2 months and the PICU for 4 days.
God blessed us with tremendous professionals who let us be the parents, asking questions and being our children's adovcate. This made for a great bonding relationship between us and them. I am so grateful for their care of my boys AND us.

Personally I think that it really sucks that you would have to even write this - altho it sounds like it was a release for you to get it out in the open!

We are continuing to pray for you and Tricia.
Thank you for updating us all on your story.

The Rosetto's said...

so glad you opened comments! cuz i wanted to tell you GOOD JOB. sticking up for tricia and gwenyth and yourself. you are exactly right to feel the way you do about it. as for whiny i think you might be entitled to that (though i didn't think so myself)!

The Engelhardt 4 said...

I think you are doing a FABULOUS JOB as a husband and father, but even better as both of your girls advocate. Keep your GREAT work!!! Blessings!!

Cindy said...

You're the one who stands to lose the most in this - and frankly, as I see it, a CF patient and their advocates have EARNED the right to challenge.

Cindy

Staci said...

All I can say is that I was a nurse before I decided to stay home with my daughter and I ALWAYS told my patients that they (along with their families) were their own best advocate and no one, including their doctors or myself and their other nurses, knew their body and their illness or condition better than them and their family. It is not only your right as Tricia's husband, but your duty to be her voice.

You couldn't have said it better.

SoxFan said...

Another AMEN!! Keep up the good work. Your girls are blessed to have you.

swahilimama said...

Bob's mom has had some of the same issues with the nurses not following instructions, and then not listening to her when she tried to explain things to them. And almost every time they've caused setbacks in his (Bob's dad) recovery. Frustrating to say the least.

I, for one, don't even pretend to know what you all are going through. I can't imagine the difficulties you have and will face. But I think the best thing I can do is to encourage you and pray faithfully for you. So, I'm praying. :)

Penny said...

Your wife and daughter are very lucky to have you looking out for their needs. My prayers will continue to be with your entire family.

Lona said...

You are absolutely right! Stay strong!

Sis Sarah said...

My son has interstial lung disease, I so get it. I won't say what I think of interns, medical residents, nazi nurses or even medical students (I'll just think it LOL).

Your doing exactly as you should, your wife isn't there for them to experiement on or to be a pin cushion.

I hope things look better soon.
Sarah

Stefanie said...

right on! Remeber God is right there with you, when you feel like no one is listening to you.

I don't know you and your wife. But you guys are in my prayers and thoughts. And everytime I come on your blog I feel encouraged and strengthed. I feel blessed to be part of your journey.

God Bless
~Stefanie

Crystal said...

100% Amen. Unfotunately, it is "just a job" to many in the medical field, when really everything is a life and death situation to those of us on the otherside. I love your family, thanks for sharing, its helping me to continue to digest my own situation and get back to my Jesus.

Carey said...

I think I agree with the majority- AMEN brother!
I love your honesty, your humor, your photography, your love for Christ, your love for your family, and your love for your girls. Praying for the road to recovery!
Carey
TX

Crystal said...

100% Amen. Unfotunately, it is "just a job" to many in the medical field, when really everything is a life and death situation to those of us on the otherside. I love your family, thanks for sharing, its helping me to continue to digest my own situation and get back to my Jesus.

Kate said...

You are so right, Nate! YOU are the person who knows Tricia's medical history and therefore YOU should absolutely be listened to at every turn.

Medical personnel, no matter how fantastic, tend to want to treat each patient by using a similar protocol and sometimes that just doesn't work. For Tricia, putting in a PICC line at her bedside isn't effective. I understand that that's how it is usually done, but for HER, the individual, it's not the right way to do it, so the hospital personnel should LISTEN to you and do it the way that works for Tricia, regardless of standard protocol.

I have several children with special needs, including a 2 year old who is "1 in a million" (according to his medical team) because if there's some weird reaction or complication to a procedure or medication, he'll have it. He doesn't display the "typical" symptoms for some of his conditions, so I've spent many hours fighting with doctors and nurses who want to tell me I don't know what I'm talking about when, in fact, they're the clueless ones who refuse to see my child as an individual who just might do things differently than all the other kids they've seen with the same condition. Once they realize I really am the expert on my own child, they generally are more-respectful and treat me as a member of the team, but sometimes the journey to that point is difficult.

I SO understand your frustration and your perspective on this, Nate. Your wife is an individual, not just Double Lung Transplant #455 for Duke... while they want to follow their "typical/usual" protocol for a double lung transplant patient, they also should respect your knowledge of your wife and what works or doesn't work for her and be willing to adapt their protocol to fit her specific needs.

Don't give up fighting. Like you said, it's your God-given appointed duty to protect your wife to the best of your ability, and like another person already commented, you never want to look back and wish you'd said or done more.

I realize I don't know everything going on at the hospital with you and Tricia, but from what I've gleaned from reading your blog and those of your family, you are an excellent advocate and you are doing the best you can in a very difficult situation. Hang in there and know that for every negative person you encounter, there are 1,000 positive people rooting for/praying for/believing in you.

Candi said...

You are so right. I didn't question some nurses and doctors at a recent ER visit when I know I should have. Luckily I had a much smarter, much more caring doctor looking out for me and questioning everything. That is why I am alive today. No one should be telling you to butt out. I am so sorry that people can be so insensitive.

Prayers!!
Candi
www.babyhoustonstory.blogspot.com

Rene S said...

I do not know what it must be like to have your wife in ICU, but my mom was recently in ICU and a coma for two weeks. It was HORRIBLE! We had some great nurses, but it was hard to feel so out of control. Our life was spinning because of her accident, and we had to sit in a waiting room instead of at her side! It hurt physically, emotionally and spiritually, and I appreciated SO much the nurses that took extra time, allowed a longer visitation and even prayed for us. I also appreciated the friends and loved ones who came and just sat with us.

What I took away from the experience is just how intense an ICU waiting room can be and just how much ministry can and needs to occur there. Everyone there is hurting and scared to some degree. I'm not sure of many places where God's love and acceptance can be more fully needed! I pray you are able to get out of ICU very soon, and I pray for the lives you will touch in the waiting room with you. Hang in there, and I am so thankful things have gone well so far! Keep advocating and caring for your wife and daughter. They are so fortunate to have you. Can you even imagine the people in ICU without any family? It breaks my heart to think about.

Garrison said...

You are 100% right with everything you have said here. People in the medical profession are just that people... they make mistakes all too often. It's awesome that you are confident and educated enought to speak up for your wife!!! Keep it up!

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