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.

372 comments:

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Nicole said...

My son has CF and I work in patient care at a local hospital and I couldn't agree with you more!! This is the first of all of your blog entries that I just couldn't resist commenting on. Anyone who has been in the position of having to be the primary caregiver for someone with a chronic condition would understand and agree with every word that you said!!

Thank you Nate!!

Jane said...

you fight for your girls...there is nobody that is on the medical staff that loves them the way you do!

medicine is a practice...if you have figured out what works for your girls, you fight for them!

And you are not whinny... give Nate a brake folks, he has been through the ringer this week. When Tricia was rolled into the OR, there was a REAL possibility that he would not see her alive again! PRAISE GOD that she is alive and feisty and fighting!!!

Hugs and prayer to you Nate....you have a HUGE responsibility (that you do not take lightly). Your road has been rough these past months. I pray that you get to breath life normally soon.

Tricia, you got a good one, flaws and all!

Angie said...

I have known too many people who did NOT have an advocate there for them...and they paid the price! I admire your dedication to your wife and child...it's as it should be! Be encouraged!
Still praying!
Angie

ITooWasAbused said...

I totally agree that you MUST stand up for the medical needs of your loved ones. You know the idiosyncrasies of their history and situation better than anyone else. Doctors and nurses do amazing things, but each patient is a unique person and their health care workers must remember to acknowledge the specifics of their situation.

Charissa said...

Nate,

I have never been in your position but you better believe that I agree with you! You know you're wife and her needs and desires and she knows her own body! Doctor's and nurses need to understand that, as well, as all of the people on this blog butting into your business! The idea of someone telling you how to handle all of this is just insane to me! Some people!

~j~ said...

Amen! You are spot on Nate, no two ways about it. Have definitely experienced the same thing and would never hesitate to speak up, and loudly, again.

Anonymous said...

The first thing I had to learn when I realized I was the mother of a chronically sick child is that doctors and nurses are not god. And sometimes they make mistakes. The first doctor I fell in love with was one who walked into the room and told me. You are your child's number one advocate. If I'm not listening tell me, if another doctor isn't listening fight until they do. Continue doing your job! And continue looking to your advocate your Father God.

Rene said...

I commend you for being such a great advocate for your wife. Sometimes we need to be a voice for those who are unable to say for themselves. I do this with my son, just as you do for your wife.

Keep up the GREAT JOB your doing as a husband, father, advocate and friend to your girls. Their lives are greatly enriched because of it.

Tyffany said...

Amen!! Stand up for what you know is best in every situation! We continue to lift you and your family up to the Father!

Erin said...

Good for you, Nate. Well said.

Lizze said...

If I didn't have my husband as my advocate during my complicated pregnancies, Lord only knows where we all would have ended up. You keep doing what you are doing and :P on anyone who thinks they know your family and their needs better than you do. *hugs*

Brittany said...

Good for you, Daddy and Hubby! You do what you need to do-- that is your right! :) And no, I don't think you're being whiny one bit!!

clara said...

Very very very well said! All patients and their families have to be their own advocates. Doctors and nurses are only human, mistakes happen. Watching closely and learning everything we can is what we do when our loved ones are in the hospital.

MoFranDills said...

I am also a nurse who just recently found your blog via another blog and while I am very moved by your family's story, I have never been compelled to comment on anything until today. I want to "virtual high five" you for being such a good advocate for your wife and your daughter. Too often medical professionals think they know it all based on their own experiences, but I will tell you right now it is ALWAYS ok to question what they say/do/want to do. Keep up your excellent care and we'll all keep prayin' for you!

Anonymous said...

Well said, Nathan. For every hundred people who comment in a supportive way, there will probably be one or two who are mean-spirited, nasty, trollish or just plain ignorant. It's hard to just ignore their comments because they are so hurtful. You need to speak for Tricia (and Gwyneth) when they cannot speak for themselves and you need to support Tricia when she speaks out on her own behalf.
To me you are the embodiment of Ephesians 5:25...you love your wife with that sacrificial love that Paul was talking about. I stand in awe of your love and devotion to your wife and your willingness to ask that extra question, insist on more information or question the actions of a health care provider. To do anything less would be reneging on your responsibilities to your wife. Those negative commenters? They are like a clanging gong or a crashing cymbal.

Sig said...

I cannot believe anyone would judge you or comment negatively. It boggles my mind.
I follow your story religiously and pray for you and your family daily.
if someone has something negative to say or think they can do it better, they seriously should shut up. You never know what you would do unless you were in the EXACT SAME SHOES.
Seegal from NJ

Anonymous said...

You know, had you not explained about the pic line, and they had troubles, people would be wondering why you didn't explain. I completely understand the frustrations of issues like that.

I demand latex free everything for our DD, "IS she allergic to latex?" Well not yet, and if you do as I tell you, today won't be the day that she has a major reaction to latex. My child, your wife, we live with them, and we do know (every now and then) what is truly right and best.

I tell nurses up front, they may only stick me once for an IV. If they don't get it, then they will call an anithesiologist. Sound stuck up? You bet, but I am a person not a pin cushion.

I remember when I was told I couldn't stay with my daughter in the nicu. That hurt was intense. And I am sad that you can't stay with Tricia right now.

Such posts are theraputic, and no one should begrudge you for it.

The Browns said...

With tears forming all I can say is thank you. Tricia is so lucky to have a husband who cares and knows and looks out for her. As a Cf'er I know that thats what I would hope from my husband and I know that I am so lucky to have that from him. You are so strong in what you do for her!

NCBeachMom said...

Well said Nate. We always have someone who is family and understands the situation stay with and be the advocate for our family members anytime they are in the hospital, whether it is a big deal or not so big deal.

And i dont think you sound whiny at all.

Dana Broehl said...

Nate,

I just read your post titled "Just Don't" I had a double lung tx five years ago. I agree with everything you said, you hit the nail on the head! Good luck with everything, I am wishing the best for Tricia and you!

Doug Broehl

Audre said...

What a blessing that God has seen fit to put you in this position. One thing I have learned from being a special needs mom is that God put me in this exact position for a reason. I love Jeremiah 29:11. "For I know the plans I have for you says the LORD, plans to prosper you and not to harm you, plans to give you hope and a future."

Trisha said...

Being from a family of ICU nurses and heading that way myself all I can say to Nathan is, "AMEN TO THAT!" Never stop being the advocate....NEVER..never stop being the voice for your wife. My mother worked in the ICU for YEARS and she would tell you the same...especially since after leaving the bedside she went into MedMal law....believe me...anyone who would tell you different eith has issues with control or has never had to advocate on anyone's behalf...so again, 'AMEN TO THAT!"

Anonymous said...

Good for you! You should always stand up for your family especially when you are so knowledgable in their care! Shame on those who can't follow the golden rule! I am glad you were able to vent your frustrations about a few situations. We all know that people are not perfect even if they are medical staff. I think people who are not supporters of this Blog should stay away.

Courtnie said...

Luke has been in the hospital 4 times already because of lung infections and every time I am very involved with his care.I think that you should tell those nurses what works best. I have seen over 20 failed attempts by nurses to put ivs in my 7 months old's arms, legs and feet. I now know that you should go directly for the feet but only if you can see the vein with that cool light thingie. If they don't have the light I very "gently" (okay not always gently) ask them to put it directly into his head.

I have also asked for other things when dr's said no but I pushed for them i.e. his CF test. I told them I would not leave the hospital till they took some blood and tested him for CF. I am so glad that I stood my ground because he is doing remarkable since his dx.

Don't worry what people say, because like you said, they have never been in your shoes.

God bless!

Anxious AF said...

People just cant help but give their opinions, it must be human nature, but comman sense usually tells us to just be encouraging, you clearly have it covered, and know what you need to do for your family. I dont think it is human nature to have common sense.
Sorry you have to deal with this.
praying still............

Em said...

I'm sorry to hear that people are negative regarding your care for Tricia. You are absolutely right to and entitled to watch over every aspect of her care. You are doing a great job, and don't let others convince you any differently! God bless you and your family! Continuing to pray...

Joyful Mom ~ Karla said...

You go, Nate! Tricia and Gwyneth are so fortunate to have a loving husband and daddy to look out for their best interests. That's why God gives us intuition. :0)

Glad to hear about Gwyneth's weight gain. Post more pics when you get time. My kids love praying for her!

Hugs from El Paso,
Karla

Chris & AnnMarie said...

I have a 23 weeker who spent 15 weeks in the NICU and recently graduated home. I cannot tell you how many mistakes I caught and prevented from nurses/doctors/RTs by simply sitting with my baby and paying attention to what everyone was doing! From medication dosage errors, to alerting the nurse my son had self extubated, IV burns, reminding the healthcare team to WASH THEIR HANDS, etc...
Nate, you are doing an AWESOME job! I applaud your tireless efforts at caring for both Tricia and Gwyneth. You are such a strong man, father, and husband. I am praying for complete healing of Tricia, you, and Gwyneth and eagerly await the homecoming of your beautiful family! God bless!

Love from Texas,
Ann Marie Kolkhorst
prayforcoy.blogspot.com

LeeAnn said...

You could not have said this better. Every one of us can make a mistake, some peoples mistakes are more serious than others. My 8 year old was just admitted for 15 days for a CF exacerbation (her first). My 8 year old caught a nurse giving her the wrong medicine. What if she had not been watching???? Keep advocating.

BelleLaDonna said...

Well...I think my first comment got eaten by blogger...but pretty much it said to keep up the good work of taking care of your family and that I think you are a GREAT husband and father! Maybe those that are calling you whiny are a bit jealous that they aren't very good advocates for their loved ones..just a thought! Still praying for you and your family!

Anne Coleman said...

Nate, when my husband fell this past summer and was in STICU for 3 weeks, I was the caregiver. He was unconscious and unable to make any of his medical history or wishes known.

When he finally came around and realized all that had happened, he told me I was his lifesaver. Not his doctors, not his nurses, ME. The reason being that I was the person who coordinated everything, who kept track of all that was done, who questioned procedures and gave permission for others.

The spouse/parent/significant other is ALWAYS the one who is there 24/7.

I'm so sorry that anyone would ever make you feel that you should "mind your own business" - they ARE your business.

More prayers for all of you, and for the blind out there.

Catherine said...

As the mother of 1 preemie, I commend you for being an advocate for your daughter (and your wife). I wish I had been more vocal when my daughter was in NICU for a month. Also, know that you are doing what God asks of you. . .being your family's leader! :)

Southern Girl said...

I haven't been in your shoes. I have been in Tricia's - at Duke, with that same care team that has wonderful people and less than wonderful people and infinite bureaucracy. And you are ABSOLUTELY right! Nobody knows their body better than the patient, followed by the primary care givers. NO ONE!!! (Yes, I'm shouting. I've fought that fight so often.) When I was post-tx I wasn't able to be my own advocate. I thank God my parents, my husband, and my in-laws were there to do it for me. And yes, I'm sure some of the staff thought my family was pushy, and interfering. My family was also RIGHT. Every time. You keep swinging. Those of us who have really been there understand. :)

Marci said...

AMEN and AMEN!!!!!!

Lynn said...

I had a similiarly horrible incident with a ER nurse one night while my mom was very sick. I was so shocked by her crudeness and rudeness that I just couldn't be quiet. I don't regret speaking out at all I just regret doing it so angrily. BLESS YOU for taking a stand. I hope things tonight are moving along postively.

Kathy's Korner said...

so glad you open comments!!

I am standing on my soap box cheering!!! How dare ANYONE dare to say things like "I know how you feel" Or even venture to begin to tell you how you should handle things.

The audacity of people.

Unknown said...

I completely agree with you Nathan. You have every right in this world to stand up for your daughter and wife so that they receive the best care possible. I applaud you.

By the way, I became an organ donor yesterday.

Beebe said...

All things-not just the good things in life, but all things-will work together for your good.

Keep standing strong :)


Praying for your family everyday.


Hey Tricia I am so happy you got your new lungs...hope you have good night.

Q's NEWS said...

I am not sure what has been said to you but whatever it was, how dare they. I could only hope that my husband would be as involved and comforting as well as knowledgeable if I had any sort of life threatening condition. And I would trust my husband to stand in the gap for me and speak for me when I could not. How precious for Tric to see you standing up for her and tending to her every single need or want.

Some people just dont work and play well with others. And for them to criticize you for ANYTHING at this point, to me, is unfathomable (I hope that is a real word).

Do what you do best, Nate - the world is behind you and our God is all around you.

The Spencers said...

The one word that seems fitting, AMEN! I know you will do the right thing, and you know what is right for them. Don't ever falter from that! You have people all over the world supporting you and praying for your strength!

shoutingforha said...

You should be commended for fighting so diligently on your girls behalf. They are both blessed because of you.

betty said...

You shouldn't have to defend yourself for advocating what is best for your family. Know that myself and thousands of others are supportive and praying for you,Tricia and Gwyneth. If I was in the hospital I would definitely would want my loved one to look out for my best interest like you are doing. You're amazing, Nate!

Megan said...

I agree totally. As a nurse, i completely believe that a patients family will always know the best care for the them. I try to always ask a patients family how they typically preform tasks (especially those with chronic diseases). I also believe that patients with families and advocates by their sides receive the best care. I applaud you in your advocacy, and believe it is so important in your wife's care.

Megan said...

I have only been reading here for a few days. My first reading was the evening of the transplant, since then I have checked on you and your girls several times a day. I think that you are a wonderful person, doing a wonderful job!

fuzzandfuzzlet said...

I believe with all of my heart that the primary caregiver is a MAJOR part of any medical team. For all of the reasons you mentioned and more.

You are doing everything right.

When it comes to parenting you will have many, many episodes that remind you that the most critical part of being a parent is trusting your gut.

Terri said...

Oh my goodness! I've been on the road since Tuesday without internet. First thing today I check your blog and WAH LA! I missed so much. I am so VERY happy to see that Tricia has been blessed with new lungs. I cried my eyes out, with a smile on my face of course when I seen the pictures of Tricia holding Gweneth, Priceless!

Nathan, I am sending you a virtual hug. I have a daughter who suffers from illness and has had several surgeries. There is nothing worse than feeling helpless when our loved ones need us the most. Especially when they can't speak for themselves, very frustrating. Tricia and Gweneth are blessed to have you as their advocate and caregiver. YOU ARE AWSOME!

Thank you for sharing your story, you have made a HUGE difference in many peoples lives, You have mine.

Love and prayers!

THE LYONS FAMILY! said...

AMEN! WELL SAID!!

Lil' Chris' Mom said...

Doesn't it feel GREAT to get things off your chest? I'm glad you did. At least I'm not the only one who does it :)
As a new cf mom, I've recently read the intro book all about CF. At the end, it says exactly what you said. You know what's best for your wife. You are her primary care giver. It says don't be afraid to speak up to the nurses or doctors. You know your wife best. I'm glad you did speak up. I hope I will do the same whenever I come into a situation like that. I'm learning so much from you as a CF caregiver. Thank you!
As always, praying for you guys,
M

Steph said...

Well said and oh so true! You are doing the right thing! You are the caretaker and you are doing an AWESOME job! Keep up the good work!

I continue to pay for all of you!!

He loves you most said...

All I can think to say is, "we love you guys so much."

And that is really a wierd feeling since I have never even met you or any of your family, but I feel so much a part of it too.

Following your story for 3 months has:

*made me think for the first time in my life about becoming an organ donor (yes, I have signed up and let my family know

*Made me pray more

*made me appreciate my husband and children more

*made me more aware of cf and premature birth.

Just thought I would share.

Sandra said...

I too work in healthcare (though not a healthcare provider) and would absolutely agree that you should ALWAYS speak up with regard to your family's care. If you don't, then who will??? Many prayers are going up for you and your family...God bless...

Ang B said...

Nate, you rock. It's really as simple as that. I'm new to the blog, but I'm a mom to an 18mos old who had a rough start. Three months in a NICU, and a trach to boot, but she's the best little girl who taught me tons about being a mom. If I don't watch out for her, who will?

Keep doing what you're doing!

Unknown said...

One more always...
Always trust God will give you the wisdom to know when to advocate and when to listen to the doctors! (It goes with the serenity prayer,God grant me the serenity to accept the things I cannot change;courage to change the things I can; and wisdom to know the difference.
You are doing a great job! I pray that you and your family get out of the hospital and go on to live happy healthy lives for many years!

Valerie said...

Amen,Amen and Amen! We are praying for you as you communicate with Tricia's Dr's and nurses - and any other care givers that she comes into contact with.

tyra and matt said...

I know you probably won't get around to actually reading all these comments, but I wanted to say that what you're doing, being a great husband and insuring that everything goes smoothly, is absolutely awesome.
I was in the hospital for a long time (I had seven major abdominal surgeries), and I was very sick. If it weren't for my mom and my husband, I can only imagine what would have happened.
Keep doing what your doing (I know you will). She needs you right now... Well, both of your girls need you right now.
I'm still praying for you all...

Jill said...
This comment has been removed by the author.
Kerry said...

Okay, I'm coming out of lurking for this post because you got me all fired up!

You are absolutely, 100% RIGHT. It doesn't really even have to do with the quality of the staff most of the time, although unfortunately, sometimes it does. ALL hospitals are understaffed. That in and of itself is the reason everyone who is in a hospital needs an advocate.

I have been injured by people who took an oath to do no harm. It doesn't mean they aren't good people or unqualified. It means they are human. I have had to remind hospital staff that it was time to take medication...or worse yet, hit the call button ten times to get someone I could even tell. My appendix burst, and I went undiagnosed for a MONTH. I should be dead.

My father in-law had two strokes at 7:00 pm in a hospital one night after a knee replacement surgery. No doctor came to see him until 10:00pm the next morning. Most people put far too much trust in medical professionals. You know your body, your history(or your loved-one's history), and most of all, your instincts are ALWAYS right.

And can I just say a little something to these "commenters?" I'm going a little negative here, so delete my comment if you'd like, I just have to get this out (told you I was fired up ;). Please people...do you realize what this family is going through? If something that Nate says hurts your ego or personal pride...let it go. Do you really think he needs that right now?

Thanks. I feel much better ;).

MadMaude53 said...

There's an old joke--sorry I don't remember all of it--but the punch line is someone saying to God, "Who do you think you are? A doctor?". It is, of course, to poke fun at doctors who think they are God. I've been a nurse for 33 years and there are some who act like they think that! But, for the most part doctors and nurses work long hours and genuinely care about their patients. But...the very best doctors and nurses listen to what their patients and families have to say--especially in cases of chronic, long term illness. Nate, you are so right to advocate for Tricia and Gwyneth. ANY doctor, nurse or other person who would even suggest that you not speak up if something isn't quite what is should be is so very wrong. I work for a large health care system in central PA. We have just started a "Tell Somebody" campaign in the three hospitals owned by the system. Patients and visitors are given a phone number and instructed to use it to actually page a team of people to the bedside of a patient that they feel has had a change in their status. The rationale for the development of the program is that the patients and families are most likely to be the people who pick up the first subtle changes in someone's condition that are quite often the first signs that something more serious is about to happen. I think your blog is great. It is open and honest and informative. You owe no apologies to anyone. If some people don't like what you have to say then they don't have to read your blog..it's as simple as that! Keep up the good work.

Jill said...

I am sorry that someone made you feel defensive and bad. My husband is a medical student, and I am well aware of the how human he really is. It is good to speak up, it is the right thing to do, because like you said they do not know her as well as you. Like I said Drs are very human. With that in mind have compassion on the humans that stumble along the way. You have never said anything to make me think other wise though, you sound very understand and compassionate, and have a good idea of how things are.

Shari said...

I completely agree. My preemie son was in the NICU for 3 months. I was afraid to leave his bedside because we caught so many mistakes by doctors and nurses. Many of the staff told us that he did as well as he did because we were there so often advocating. I am praying for your family.

capitoldiver said...

This doesn't begin to compare to what you're referring to, but even when my elderly parents go the doctor and have to give blood, I tell the nurse not to try to get blood from this place or that place, because it just doesn't work FOR MY PARENTS! I've been told time and time again that "we know what we're doing, and we can handle this" only to fail miserably and after numerous attempts to do it "their professional way" they end up taking my advice. So, you are right, NOBODY knows our loved ones like we do, and I really appreciate medical technicians who LISTEN to our helpful advice. It makes it easier on all of us, THEM included. Keep up the fight!

CF Mom said...

Nate:

I am a nurse (and recent hospital patient) as well as a Mom with a 30 year old daughter with CF. As a professional, I can only apologize for the behavior and comments made by "prepbarbie"... this young lady has a lot to learn about what it takes to be a nurse. I know a lot of nurses who resent family input because they think they are being told what to do, but they should really appreciate the help. You are doing a great job as an advocate for both Tricia and Gwyneth. Even before I became a nurse, I always questioned the doctors...folks need to remember that Duke is a teaching hospital and some of these "doctors" are fresh out of medical school and have never even touched a "real" patient, nor do they know very much. My daughter watches her nurses, residents, interns and doctors like a hawk...I can't tell you how many times she has had to stop one of them from doing something that could hurt her further. She has even had to "train" new nurses on how to work the equipment and how to care for a patient with CF. Nurses caring for CF patients would do well to admit that their patients and family members do know what they are talking about and are only trying to help. Speaking as a nurse, don't ever leave a family member in the hospital overnight without someone advocating for them. The things that can happen to a patient with inexperienced staff are very scary. The sad thing is that most incidents are unreported and the nurse is never disciplined (thanks to the nursing shortage, there is no longer a "responsibility" factor in making errors). I will now step off my soapbox. Hooray for you and keep up the great work!!!

Sarah said...

I do not personally know you, but just by reading your blog I can tell you are an amazing husband and father. Continue to do the amazing job you are doing. You give so many people strength and hope.

When my 3 month (adjusted age) old was in the hospital following her surgery to put in a Trach, the *new* doctor in the ICU gave her 10 times the amount of a sedative then she was suppose to be given. He said he panicked.
I also had to ask a nurse (in ICU) to wash her hands, and another nurse dropped a glove on the ground and picked it back up and put it on her hand! I was beyond myself. But thank god I was there to speak up for my dear child.
I truly believe that we are our childrens/spouses only advocates and know them the best.
You are in my prayers.
Sarah from California

Lesley said...

Amen to that! While I don't know anyone with CF our adult daughter has a rare, hereditary liver disease, called Porphyria that no one else in the family has and for the past ten years, since she was 17, I have battled interns, nurses (especially emergency department nurses) over pic lines, medications, accessing her port-a-cath and doctors on call changing her doctors orders. I have ranted and raved and cried and prayed. I now know that MD does not stand for Major Deity and I am a usually quiet, in the background type of person, but where our daughter is concerned I can be a mama bear! Thankfully we have been blessed with a doctor who is young and not set in his ways, he listens to me and to our daughter. He has even called me and asked me to see what research I can find on the Internet and then we compare data. I say all that to say although I am not in your shoes, my shoes are similar and I now know more specifically how to pray for you. Stay tough and I'll keep praying!
Blessings,
Lesley

Anonymous said...

Hi Nate~
I think this is the very first time I have commented on your blog. First and foremost I have been praying for you all and I am so completely thrilled that Tricia received her new lungs. Also, that your baby girl is doing so remarkably well! What a blessing! God is shining down on you all.

Now to comment about this entry. I fully and whole heartily agree with everything you wrote. My grandmother recently passed away and prior to that she was sick in the hospital. I questioned everything. I was her voice when she couldn't fight for herself. You HAVE to do this! You have to take a stand and be your own and your loved ones advocate. I admire and respect you with what you are doing. Tricia is a very lucky woman.

Blessings to you.

Andrew and Brooks said...

You don't sound whiny, you sound like you have righteous anger/frustration that only someone who has been in your shoes could have! So appreciate your honesty and the way you are living out your wedding vows every day!!!

laurie said...

I agree. I've been in the hospital where they were swarming with interns and felt like a practice dummy.

Anonymous said...

AMEN.

Ellen said...

Nate-
You are Tricia and Gwenyth's best advocate. I am so sad that someone had the audacity to question you. You are doing only what is best for your family. You all continue to be in my prayers.

Kim said...

Hey-I don't know anyone who wouldn't want a "you" by their side in a time of need.
Who says these things?
It's scary how Satan creeps in...
Don't let it rob you of your joy-praying for you and your girls!

Amy said...

I am so sorry that anyone would leave any kind of discouraging or critical comment for you. And on the flip side, I was so blessed to see you stand up and righteously and respectfully defend your wife and your decisions, not only to the medical staff, but also to those people in blog-land who don't know what they're talking about!! God has given you great wisdom and placed you in an extraordinary circumstance and He is leading and guiding you every step of the way. Don't second guess yourself or be discouraged for even a moment!! You are doing exactly what God has called you to do for this time and place, and that is to be the absolute best husband and father that you can be. Keep it up!!!!!

Melissa said...

Good for you Nate. I have special needs kids, and I am ALWAYS their first advocate, especially with those who don't know them.

And having two parents who are nurses, I *know* what medical professionals know, and I also know that they prefer people who can speak up and advocate to those who just complain about how it went wrong afterwards. So you do what you need to do, and dismiss those who don't understand.

Kimberly said...

I am so sorry that you are having to deal with negative comments during this difficult time for. You are definately right. As a former nursing home admissions counselor and a mother of a daughter with a chronic illness and chromosome abnormality who has had extended stays in the hospital and nicu, I have seen it numerous times. Your wife and daughter are depending on you. You are doing the right thing by advocating that they receive the very best care. It doesn't matter how good the hospital and staff is, everyone makes mistakes now and then and a patient needs their family to be there for them. As always, I'm praying for your family. You are doing a great job!

audrey&bekahsgaga said...

Nathan
You are the most important advocate for both your wife and your daughter. I learned that the hard way with my son during his many years in the hospital. Keep up the good work and know that God gave them to you for your love and strength. Rob and Sherri Jenkins

Unknown said...

I am always completely blown away by the fact that people who "visit your living room in cyberspace" (i.e. your blog) would make rude or inappropriate comments. I've heard many others make similar posts about rude comments and can't understand it. If I disagreed with something someone said ON THEIR OWN BLOG, I'd just not visit there again, but would never presume "I knew better." What arrogance.

Gwyneth and Tricia (and you) remain in our prayers. I am glad both are doing so well.

DeLynn said...

Thanks for continuing to share your journey. I am a nurse (though haven't worked at it since having children 20 years ago) and my husband is a doctor. I totally agree with any patient's need for an advocate--especially in this day and age of under-staffing. Continued prayers for both your girls.

kimmyo80 said...

i agree with you Nate. Praying that the Lord will continue to wrap his Big Daddy loving arms around you and Tricia and Gwynth and your families and remind you of His love and peace and rest. I fully believe that when you have a concern for Tricia's care that it's the Holy Spirit who has laid it on your heart and made you sensitive. By standing up for Tricia you are being the husband that God created you to be!

Annette said...

well said, God Bless You Nate.

Mills Family said...

Glad you opened the comments. I've been reading your story for a few months, and I am amazed at your strength. But more than that, I am excited about your ability to honor God through it all! Be strong in Christ, the solid rock in which you stand!

Jessica said...

You are an AWESOME human being!!!!

Nicole said...

You couldnt be more correct, some people who occasionally go to the doctor for this or that may rely on doctors to 'know best' because they truly just dont know much of anythign about medicines, treatments, or even their own body. I have a hard itme understanding this frame of mind.

We as CF'ers (and spouses caretakers etc) know SO MUCH MORE about ourselves then our doctors, even the specialists. I am so happy to see you fulfilling your role to a T!

Keep up the good work listening to your gut and sticking to your guns.

Unknown said...

Bring it, Nate! I've spent a tremendous amount of time in the hospital, and my fab husband is my greatest advocate at those times when I cannot speak for myself! He has actually stood between me and a nurse one day - too long to share here, but funny in hindsight! This is simply you fulfilling your GOD given role as her husband! If your advocacy saves her even a moment of additional discomfort, it is worth every bit of time and energy on your part.

Melissa P. said...

this is YOUR blog and YOU have the freedom to say whatever YOU want! oh, and by the way...i completely agree with you...may God bless you with strength and wisdom as you care for your girls!

Carrie said...

Wow! I can't believe that people have the guts to critize someone in your situation. As if you don't have enough on your mind. I am so excited for you, Tricia and Gwyneth! Congrats on the new lungs. Praying!

Jim and Jami said...

Nate Keep Doing What You Are Doing! Still Praying!

flemingfamilycircus.blogspot.com

Anonymous said...

Amen to you for standing up for your wife and daughter!

I remember a nurse friend telling me once how she and her friends can't stand the families that "pester" the staff all the time when they are at work. She said those patients are their least favorite to care for, and that they even take turns with them cause no one wants to get "stuck" taking care of them all the time because of the annoying family members. She also said the ones that complain the most are the same ones that never bother to thank the nurses or even get them gifts like the "nicer" patients do.

I just sat there listening to her and when she was done, I said,
"well if my family member was in your hospital, I would probably be labeled by you and your friends as one of the annoying family members too! But I know would remember to say thank you's and get gifts cause I would appreciate the good care."
So, don't change what you are doing, Nate, because of what some people say to you. High five to you! Hope you are getting some rest in between visiting hours.

ps. Just curious, do you ever post Tricia's trust fund's money goal like your Great Strides one?

LoveLladro said...

I couldn't agree with you more. My mom battled breast cancer for 19 years... doctor after doctor and nurse after nurse. She taught me that only I can stand up for my medical rights and that I know myself way better than any doctor or nurse.

Quick story... I broke my hand when I was 4 months pregnant. When we (hubby and I) went back to have it checked on a month later, the (incompetent nurse) told me that she would be back to take me to Xray... even though I was pregnant. Long story short... hubby and I stood up for ourselves... I was 5 months pregnant... she got indignant and in the end, the doctor agreed with me. Totally a small story compared to you guys but you are so right.

God Bless you for taking such good care of your wife and daughter. More men need to be like you (and my hubby ;~)... less need to be so judgmental... especially about something they know nothing about.

Ok, long comment. Sorry. God Bless... praying for your family!

SG said...

Amen1 You are your own best advocate and when you can not talk, the one who is there with you, going through it everyday is best! NEVER apologize for that! Shame on anyone who tries to tell you to!

Twinkletoes said...

I am sorry - sorry that anyone (even if only ONE) made you feel the need to post something like this. EVERYONE else KNOWS that YOU are the HERO in this situation - right along side of YOUR HEROES, Tricia and Gwyneth. Stay strong - for them, and for yourself!

Stacy said...

Amen!

I can speak as a mother who has watched her son go through a liver transplant. I directly attribute that transplant to the fact that a PRN nurse came on duty and spent more time trying to iron things out than take care of my 27-week preemie.

It is your job - your right to take care of your family members while they are inpatient. No one else knows them as well as you do.

Still praying for your miracles...

greatsal said...

Preach it Bro!!! You're right on!!!! Love to you and your wonderful family....

Sally from The Woodlands, TX

Our Family of Four said...

Amen! I've had more surgeries than anyone my age should and there is always something that the medical staff misses. No matter how good a doctor, nurse, aide etc they can and do make mistakes and can't fix them unless given more information by the patient and family. And let's face it... some doctors aren't very good.

Anonymous said...

Just another one in your corner. And just as an aside... who would want a nurse with a blog name "prepBarbie" working on them anyway?? :)

Me said...

Nate - you are 100% right. My father-in-law has been the advocate for my mother-in-law for the past 30 years as she has battled a muscle disease. I am just so sorry to hear that you were getting criticism for doing exactly what you should do as a loving husband and the primary caregiver for Tricia. I will add this to the list of things I am praying about for you and your family.

Katy said...

Way to go- Tricia and Baby Gwyneth are lucky to have you looking out for them, and you are blessed by them too.

Maren said...

You are awesome Nate! I am so glad you enabled posts under this one!!! Soooo many of us are on your side cheering you all on through prayers! You are doing such an amazing job taking care of "your girls". I agree 100% with your post. Sorry you had to clear that up! I love that you delete the "unnecessary" stuff =D Thanks for letting us be a part of your journey!

Maren (KY)

Anonymous said...

Praying, praying, praying. May God bless you for taking a stand and being so strong for your family.

Our Family! said...

God bless you, Nate!! Tricia and Gwyneth are so lucky to have you. In all of our prayers that we've said for your girls, we have also asked for strength for you, as well. Thank you, thank you, thank you for sharing your journey with all of us!

Love,
Rob, Amy, Emily, and Ryan Farrell

Awesome Mom said...

Great post! As her husband you need to advocate for your wife especially when she can't. I barely left my son's bedside when he was in the hospital for his heart surgeries and I was glad I stuck around. I was able to avert several possible medical mistakes just by being there and asking questions about what they were doing to him. You are the only one that is around all the time and has been with her every step of the way for this hospital stay. I think that should earn you some street cred with the doctors and nurses.

Anonymous said...

I've been following your story since January, and as a fellow Christian I have been so impressed with your faith. And that of your family's and Trisha's as well. Seeing God work has been an amazing recharge to my faith. I have remained a 'lurker' but several times wanted to let you know there was one more person (well two, my husband asks about you all the time!) thinking and praying for you. I've thought each time you've had to write posts like this one that it's sad that small minded (but in their minds well-intentioned) people have to come on a blog they weren't invited to and be critical. And sadder that you take precious time away from Trish and Gwenyth to address them. Life is too short to spend it trying to please everyone.
Yvonne
www.xanga.com/Dharma2233

JoAnn said...

You spoke truth in such a beautiful way! You are her best caregiver! Praying daily for Tricia, precious baby girl, and the rest of the family.
JoAnn

Crystal said...

Nate- You have to question doctors and nurses sometimes, When my kids were in the NICU, I questioned everything the nurses did and every order the doctors wrote, not because I didn't feel like they were doing their jobs, but because I am their Mother and I needed to know what was going on. So I can say in some ways but not all I do know (our NICU is in a teaching hospital) what you are feeling, at least with baby Gwen. You need to know everything that is happening and when you think something is not being done right you need to speak up and be heard, just because the doctors went to school doesn't mean they know you, your daughted, or your wife better than you do! My email is open if you ever want to Vent out.

Lara said...

Being an advocate and caregiver is the best this you can do for your precious wife and daughter! Boundaries are so healthy, loving, and good!
Keep speaking truth and thanks for being so honest!

Blessings from Arizona

Kim said...

What a blessing you are to Trish and Gwyneth! The days of just being an innocent bystander as a family member in our health care system is over. I don't doubt the skill and compassion of most health care professionals, but the sad fact is that in most hospitals they are understaffed. Which leads to overworked and fatigue professionals. When I had surgery a few years ago, I made my husband promise to stay with me the first couple of nights as I was terrified of being their alone. As a patient, you fell vulnerable and it is very hard to advocate for yourself.

I applaud you! My prayers are with you all and I look forward to reading more good news from your corner of the world again real soon!
Kim in Seattle

Rick Lawrenson said...

I had a lengthy discussion today with a Duke representative about a related issue.

She told me of a physician who had to be hospitalized for 7 days and came out of that experience with a completely different view of hospital care than what he had before.

And part of what he learned was exactly what you've written about. He learned as a doctor to listen to the patients and their family advocates.

Medical care must include more than the professionals. Even with their incredible skills, resources and compassion, they still are capable of making mistakes. Even at Duke.

Not long ago one such mistake nearly shut down their transplant capabilities. But they learned from that mistake and have wonderfully rebounded.

Having spent a lot of hours at Duke I'm convinced Tricia's care has been the best. But it has been made even more so by Nathan's and Agnes' presence and advocacy.

Judy said...

My family has a rule...no one stays in the hospital EVER by themselves. We have seen way, way too many mistakes being made. My son almost lost his life because of the laziness of a doctor and when I just gave birth to my second child the doctor who had just checked on me 20 min. earlier didn't even show up for the delivery (she was sleeping). Thank God for good nurses who took care of everything. You are absolutely right that you have to be an advocate for your girls. I would think that most medical professionals would agree, but apparently not. Sorry that you're having to deal with negative, grouchy people when you're going through the most stressful time of your life. Hang in there. I'm praying for you guys!

Laura said...

Nathan,
Hi my name is Laura R and I have kept up with your blog daily and have been praying for you and your precious family. I am a nurse along with being a caregiver for my aunt who received a liver transplant. I was amazed how people thought they just had to give their opinion. I can understand your fustration when some don't listen to you because you know your wife better than any one else. You are her spokesman right now and I commend you for that. I remember when my aunt who was like my 2nd mom was in ICU after her transplant and they wouldn't let us visit her when we'd be with her from day one. It was hard to take. You are doing your God called thing by caring for your wife. I think its a wonderful thing.
The emotions that you have delt with and will deal with in the future because of the transplant will be huge but I know and believe that our God will give you the strength and mercy for each and every day. You are his and he is holding you and your precious family in your hand.
Praying for you every day.
In Christ,
Laura Russell

Anonymous said...

HOW RIGHT YOU ARE! YOU STICK TO YOUR GUNS AND FOLLOW YOUR GUT WHEN MAKING DECISIONS. YOU ARE THE CARE GIVER AND YOU HAVE THE RIGHT TO DEMAND THINGS ARE DONE IN THE BEST INTEREST FOR YOUR GIRLS.

laurie said...

I had a son in the NICU and people would tell me they couldn't believe I didn't spend every waking moment with him. The truth is I spent every moment I could with him but there is such a thing as over stimulation! My baby wasn't even suppose to be born yet. It was probably the hardest thing to do but I let him sleep and got the care I needed as well so I would be ready to take him home when the time came. I was hurt to hear people telling me they couldn't believe I would leave my baby in the NICU. I also had a friend who had a CF baby and he was in the hospital extensively. Many of her friends took turns staying with him so he got the best care. The nurses liked having "help". His mother did as you're doing. She was very active in his care and I think it made a huge difference.

Kathy said...

Right on...preach it, brother!

Anonymous said...

Praise God you speak up! I am ONLY alive today because I refused surgery I, as a layperson, knew was not warranted and my doctor admitted 6 months later that he would have killed me if I'd have signed the authorization. PATIENTS AND THEIR FAMILIES very often know best and you are WELL within your rights to speak up. I have actually considered starting a patient advocacy company that a family could call (non-profit) as an independent research and counsel when a loved one is in the hospital to make sure the patient's case is fully looked after and no one drops the ball.
I hope many people realize from your post that doctors and nurses are simply people and we ALL have the ability to be wrong but it's not THEIR life on the line.

Anonymous said...

Nate, I am so proud of you! You have done what takes many men a lifetime to learn, and that's how to stand up for your wife and daughter and do what's best for them when they can't. Don't ever let anyone tell you that isn't your place. God made it your place! I'm sure it gives Tricia tremendous comfort to know you're there and advocating for her. Blessings to you and your family.

Anonymous said...

I am the wife of a Duke Lung Transplant recipient. My husband also has Cystic Fibrosis.

People with Cystic Fibrosis and their families spend their lifetime advocating for their loved one with CF. We have to learn all there is to know about CF and then we have to learn all there is to know about our loved ones CF. Each case is different and their care has to be carefully managed to meet their specific needs. There is a great deal of ignorance about CF care around the world. The majority of CF patients and their family/caregiver know more about CF than their Drs and medical staff. They have to. Studies have shown that CF patients have better success post transplant because they and their caregivers understand the importance of a regimented daily care schedule and adjust more easily to the post transplant requirements than others. They also understand the importance of being knowledgeable and invovled in their care and treatment to prevent careless/thoughtless mistakes made by others.

I too had to meet with the director of nursing of ICU on my husband's behalf. I too had to deal with communication problems and mistakes; several that could have cost my husband his life. Once he ended up with having to have another chest tube placed without the benefit of sedation. I too had to make sure I understood what was going on with my husband's care so that I could be his voice when he could not speak for himself. He would do the same for me. He counted on me to stand in the gap on his behalf.

Nathan is absolutely right in everything he has said. The enormity of the responsibility that is placed on a caregiver/spouse/parents shoulders can only be understood by living it. We have to be alert and on top of everything that is going on 24/7. It is by the Grace of God that any of us survive. But amazingly we do. We have to learn to continue their involved care once they leave the hospital. What takes an entire staff to do 24/7 is placed on the shoulders of one person or their family. In addition to the 30 to 50 pills they have to take each day, most lung transplant patients leave the hospital with IV medications that have to be given around the clock. In my husband's case, he had five different IV medications. I had to run a different IV every two hours around the clock for the first month after he was released from the hospital. Don't forget about clinic appointments a couple of days a week that take all day and going to rehab everyday. And special food preparation to accomodate diet changes.

I have no idea what rediculous thing people have written here to cause Nathan to write what he had to write about this; but I can assure you he is right. Nathan is just beginning to go through all of this. It is a new ball game now with those new lungs. There is a mountain in front of he and their family called Lung Transplant and they have to climb it. Tricia has traded CF lung disease for Lung Transplant Disease. The rest of her body still has CF which has to be monitered, treated and managed.

People who read his blog are being given a rare insight into Lung Transplant and Cystic Fibrosis. You are being given a very rare opportunity to share in such an amazing experience. No transplant happens without problems, struggles or stresses that must be dealt with.

No one has the right to ridicule anything he has to say about this experience he and their entire families are going through. They need all of the support, encouragment and prayer they can get.

I encourage you who want to be discouraging and critical of the way Nathan is dealing with situations that arise during this lung transplant experience to visit the Duke Lung Transplant Friends Website (www.dukelungs.org) and meet some Lung Transplant recipients and their caregivers. Take some time to read their stories and the information provided there. You will never be the same. There are other lung transplant websites out there too that explain what transplant patients go through along with their caregivers and families.

Instead of being critical...use your head and your time to learn.

Ginny said...

Nurses and doctors are people. And people can make mistakes. People can be wrong. You have two ladies there who definitely need you to speak for them while they're unable.

My second son started having breathing problems about twenty-four hours after being born. He was born at a hospital which requires a 48hr stay, or he would have been home when all of this happened. I have no official medical training, just that honorary medical degree from watching Discovery Health Channel for years. :-)

I noticed he was flaring his nostrils and retracting his chest when breathing. He was definitely working very hard to breathe. His feet were ice cold, he didn't want to eat, and his blood sugar was down. The nurses kept saying he was fine. I wasn't aware at the time that he had every single warning sign of having a very serious Strep B infection, I just knew something was very wrong. He was septic and they had absolutely no idea.

I demanded he be looked at in the nursery. He was gone for over an hour when they finally came and admitted there was something wrong...but they didn't know what. After another hour of them basically just experimenting on him, repeatedly sticking tubes down his nose and throat to see if he aspirated formula into his lungs, and treating him like a pin cushion trying to get an IV, I said I wanted them to call for a NICU team to come and get him. He needed to be someplace where they could help him. That hospital was an hour away.

When the NICU transport team came to get him, they were absolutely disgusted with how his IV was started and all the needle marks all over his arms from failed attempts and the bruised heels from repeated glucose checks. When my husband and I arrived in the NICU after he arrived, the transport nurse said they thought he had Strep B and he would have passed away within another couple of hours if they hadn't come to get him. YET THE PED AND NURSES AT OUR LOCAL HOSPITAL HAD NO IDEA!! It was only on my insistance and, ultimately, barking and crying of orders after not being taken seriously, that he was even looked at by the doctor.

It's unfortunate if any baby needs to be admitted to the NICU. But, thank goodness those units are there. Thank goodness they are trained how to handle babies and cause them as little trauma as possible. I will forever be indebted to the neonatologist who saved my son's life, and the nurses who took such wonderful, special care of him. Had I not been so insistant that something was wrong, my little spit fire of a three year old would not be here today.

So, Nate, you do what you need to do. Nobody knows Tricia and Gwyneth like their family does. You are their primary caregiver and certainly need to have a say, and be a part, of their care. IMO, any "good" nurse and/or doctor will want to hear your opinion...even seeking it out... about what works best for your girls.

Jan Scholl said...

I was once incorrectly diagnosed with stomach cancer. I had to live with that and the imminent certain death sentence of it for a week. They were all wrong. I was one sick puppy but very curable. Never be mute in your concerns. question, and requestion.

Lea said...

as a cf parent i have to agree your ALWAYS advice is absolutely spot on! we are their advocates when they are not always able to speak for themselves. and as a mother at the end of the day i need to know in my heart i did my best in every situation. you have so much support here, any negative comments will be a real minority.

sarah. said...

I love the ICU doctors that I work under and I'm very confident in their knowledge and the skills of my fellow staff nurses... but NONE of us are perfect or always know what is best. Your girls are lucky to have you fighting on their team...

I think I would want to disable comments on every post just so I didn't have to deal with ignorance or insensitivity... I hope the good continues to outweigh the bad. And I hope you're getting some good rest.

Anonymous said...

Good for you Nate. It's way too easy these days for people to fall through the cracks in today's health care system. (Not necessarily to the direct fault/blame of the nurses/doctors.)

Patients need to take responsibility for their own health and ask questions etc. and if the patient is not able to, then it is up to the closest loved one.

I only hope that if I am ever critically ill that I have someone like you looking out for me.

Take care.

Joyful Heart said...

oh nate -

you said it perfectly, AMEN!

blessings from an Iowa family

B-Mama said...

Rah Nate!! Advocate and then some and we will stand behind you! It is vital for you to remain at the forefront of decisions made for your wife and daughter. Blessings and prayers and chin up!

Emily said...

Well done. I am sorry that you had to write this post, but I am glad that you did. Maybe others will think twice before trying to tell you (who in all reality is a total stranger) what is best for the people that you love more than most anything in this world.
You are doing a FANTASTIC job Nate! Tricia and Gwyneth are so blessed to have you fighting on their team!!!

Chris said...

I could not have said it better Nate. I was an ICU nurse, and you are right - I always encouraged family to stick up for what they knew was right in their hearts, and I would step up to bat for them with some still green interns :-)....

NEVER be afraid to stand your ground and question - Doctors are not gods, they are HUMAN - and do not be afraid to dig your heels in deeper.

I can't tell you the number of people I have seen in my years as a nurse that were afraid to question the doctor, because they put them up on a pedastal.

Most doctors appreciate the feedback - the ones that don't well...they need a bit of grace!
Stand strong!

P said...

Man I havent a clue how you do this, but I trust your judgement. I have had only one situation in my life in a hospital with my child, and I ended up figuring out machines, and doing all sorts of things. The nurses were great, but were so overscheduled and things are so dynamic, you cannot let things slip.

We are so encouraged and edified at reading your blog. Soon, we will have a baby (almost same due date as yours) and we will have some surprises sent your way for your child.

I cannto wait to meet you all in the new kingdom.

Lou Ann said...

A friend of mine in Bogota Colombia told me on Wednesday night to check out your blog. I was just looking at this post this morning Saturday and as a RN, I want to tell you your thinking is correct. Every patient needs an ADVOCATE, we nurses try, but we are not there at all times. You see the whole picture more than all the other care givers and myself as the nurse appreciate family input. It can sometimes be intimidating for some care givers to be questioned or challenged, but I have found that if I listen objectively I also benefit in providing the best care possible. Your wife needs your eyes and ears each day to help her receive the best care. So from a medical professional, Amen! Know that people across the globe are praying for you. LAB RN OHIO

kekkey said...

your doctor may be an expert at caring for people with CF, but tricia is the expert when it comes to tricia. you are a good man to back her up when she says something isn't right.

looking forward to photos of everybody!

hugs and prayers!!

Andrea said...

I have to say that I agree with you 100%!!!! I have not ever had my spouse inthe hopital, but I have had my kids there & I hve had to be their advocate!!! So AMEN!!! You are very right!!!

Patyrish said...
This comment has been removed by the author.
Sarah Joy said...

Tricia and Gweneth are so blessed to have a PRO ACTIVE caregiver. Too many patients do not get theproper care because they are sick adn can't speak up for themselves adn don't have someone to do it. I am happy to hear that the pic line was placed WHILE IN RADIOLOGY! I was appauled to think it would have been done otherwise. I had to have one to get through my last preganacy and know that they are ann invaisve procedure that IS dangerous since they get so close to the heart and it really does help to have a live xray while havign one placed. I can't imagine what Trica went through with ten misplaced ones, it makes me sad to think about it. I am so glad that they listened to you, Nate. Keep standing up for your girls. You are, by God's grace and wisdom making so many tough decisions. I am praying for you as you do so. May Jesus give you strength and a clear mind despite emotions and lack of sleep. God bless you!

Annie LuMaye said...

Oh my gosh...EVERY patient needs an advocate and you are doing a wonderful job watching over your wife and daughter. Even the best hospitals have overworked nurses and tired doctors. Mistakes happen. I'm praying for you during these rough times with Tricia in ICU. It has to be terribly hard for you not to be right there with her 24-7. Stay strong...and keep doing what you're doing! God Bless!

Mary said...

((Hugs)) to you Nate for caring so deeply for your precious wife. May God continue to grant you the wisdom to take care of her every need, and guide you through every step of the process.

God Bless you all.

Mary
Florida

Tessa & Nick said...

Nate, I will be a nurse in a month and I am glad that you posted this. It is important for people to use their voice when it comes to the care they receive from any medical personel. We are professionals but definately not experts on individuals if that makes any sense? Keep doing what you are doing, don't back down. We are all blessed to be part of your journey, it definately has touched me on a daily basis. Much love and God bless!

Kim said...

Believe me. I was a nursing assistant, and the last thing that anyone in a hospital wants to do is cause more physical suffering to their patient. So if staff can put their "we know best" egos aside and listen to the families (especially families of someone with a chronic illness, like CF), everyone benefits.

Thank you for using this to encourage others to stand up for their families as well.

Jenn R said...

I am sorry that circumstances made you post this but at the same time very glad you did. You are their best advocates, something I have learned myself. Only you know Tricia and Gwenyth as deeply as you do.
I have had to be an advocate for my son when his asthma was not controlled or for when he needed to be evaluated for ADD and the schools balked (I won of course). I was an advocate for myself many times over as I am a chronically ill person with multiple health issues that require repeat, often lengthy stays at the hospitals.
There were many times that I had to fight for tests (I used to be an ICU RN), simple tests that would have told the doctors quick answers but instead prolonged it and made things worse because they refused to perform them. I have even requested transfers to other facilities because there were times that I did not feel like I got anywhere with the staff and felt like I was not getting optimal care.
Did I offend anyone by doing this? Probably. But I don't care. It is my body, I fought too hard to be alive today and won't let mistakes take me from this earth.
Amen for standing your ground. Jenn from NY

KatBouska said...

This entry gave me chills. BRAVO Nate! I spent some time in the ICU after I had my second baby and it took a LONG time before I realized "wait a minute, this is MY life, and at teh end of the day I become just another name on a page to you guys, therefore I must rally my family around me and fight for MYself." We mistakenly think that someone in a white suit knows whats best...they are great, but not ALWAYS right. Stay strong and keep taking care of your family!

Janice said...

i think you have the right to vent! it is your own blog and your life with HUGE obstacles! so go ahead and speak your mind...

Kim said...

Well said.....

Lela said...

Amen and amen! Patient advocacy is incredibly important, and no one knows what you and Tricia have been through better than you and Tricia. Tell your naysayers to go research hospital screw-ups where everything from the wrong procedure to the wrong med has been administered because no one knew enough to speak up.

stephany said...

Tricia and Gwyneth are lucky to have you looking out for their best interests and standing up for and speaking out about what's best for them.

I'm thrilled to hear that Tricia is doing well! Prayers continue for a speedy, complication-free recovery for Tricia, and for everybody who is and will be involved in her recovery. Of course, the donor's family remains in my prayers, too.

-Stephany

Laura said...

As a nurse I will tell you that there is nothing better than a family member that is willing to be an advocate for your patient. If all nurses would just take the time to listen, the care for their patient would be so much easier.

Keep up the good work! Your girls are lucky to have you!

Kristin said...

Nate:
Thanks for this post. I am so thankful that you wrote all of this. It is hard to be the caretaker sometimes, but you are right in that you know your spouse better than doctors and nurses. This post is a HUGE encouragement to me as I sit beside my husband in the ICU trying to decide what is best for him and our family.

Unknown said...

Amen, Nate!!!

Sabrina said...

As a nurse who has worked in the ER and ICUs- GOOD FOR YOU!!!! From what I read here you do a great job as caregiver, lover, friend, encourager, supporter, and helper and that's just to name a few. Keep it up! -Sabrina

Leigh Ann Osteen said...

Way to go, Nate. We should support you and Tricia in every way we can. So, as John Mayer sings, "Say what you need to say." Leigh Ann, Nashville

Julie said...

Amen! When I was with my husband when he had surgery, there are so many things I did/said that ensured he got the best care - if I had not been there as his advocate I don't know what would have happened because even the best nurses have limitations on their time and knowledge of a person's history and just so many other things that make the picture complete. Shame on anyone who criticizes you for serving as Tricia's advocate at this critical time. Our prayers are with you!

Nonie said...

Fight for your family every step of the way. Well done, Nate.

The Family Bond said...

I don't know if you will even see this due to the hundreds of comments. But I totally agree with you. I experienced these "issues" on a different level with my dad. He is a heart patient, so to make this comment short, I, too ultimately had to advocate for him. It was a great feeling when the doctor that had only seen him twice came in the room (filled with many family members including my mom) scanned the room, looked at me twice and said "oh, I remember you". My mental reaction was, "you better". you see, my mom is an x-ray tech and in the 25 years she has been doing this, she couldn't ever let go of the idea that you "don't question the doctor b/c he is the doctor and it's disreptecful". regardless, I left quite an impression. No, I didn't "tell the doctor off", I just merely asked questions and demanded answers. I made suggestions after researching and demanded the why's and why nots.
HSB

Anonymous said...

As a transplant nurse with over 20 years' experience, I say AMEN to you! We know the theory, but you know the *person*. We work best when we work together; and we do the patient a terrible disservice when we discount your observations and feelings.

Josie said...

Well said.

Unknown said...

I couldn't agree with you more!
(and my family has had only minor medical issues so far thankfully!) I was on vacation in florida last week but checked and saw your birthday picture you posted but never got on again until today! what a shock and surprise to see tricia received her new lungs! All praise and glory goes to Him! What an answer to prayer and to think....God saved it for your birthday instead of Easter. He has a sense of humor truly! Will continue praying for a speedy recovery and relief of pain for tricia!

Fermina Daza said...

Amen. Praying every single day for Tricia, Gwenyth, and you.

Patyrish said...

I thought I commented here but I don't see it!

I agree with you 100%. I have a four year old with Emanuel Syndrome. She has had many surgeries and medical problems. I learned the hard way that if I don't advocate for her, IT COULD KILL HER. Doctors mean well but they don't know everything about each and every patient...not like their family member would. My daughter's medical history is memorized in my head, I know each and every intricate detail of it like no one else does.

Residents/Interns mean well but again don't always know what all is going on. YOU ARE Tricia and Gwyneth's life line. I admire you so much.

Praying for your family without ceasing.
http://www.youtube.com/watch?v=RUoWKPJlw-U

Beverly said...

Nate,
I have been a nurse for over 30 yrs and I am also the grandmother of a precious 14 month old baby girl who has CF. I want you to know you are exactly right in your thoughts regarding your wife and child. YOU are their advacate. More people should take an active role in the care of their loved ones. Any professional who has a problem w/ that is unsure of themselves. And others don't know what they are talking about because they have not been in your shoes. My family has had exactly the same issues and concerns w/ the care of our grandaughter at Duke, from the waiting room , pic lines missed multiple times to the interns...But, as you said we are so very blessed to have the majority of the team at Duke who are wonderful.. and truely care for the patients and thier family.
Just remember know one has the right to say anything regarding you expressing your concerns. God bless you and your precious family. What a miracle you have recieved in them. I know personally w/ such wonderful blessings are many trials. I am proud of you and your wonderful devotion to your family and our Lord and Savior. I will continue praying for you and yours.
In Christ,
CF Grandma

Jac said...

I've been reading your blog with interest for some time but this is the first time I've left a comment.

I just wanted to say how important it is as a patient to know that someone is there to speak up for you. I was in hospital recently and it took away so much anxiety knowing that my husband would speak up whenever he was concerned about my care (no matter how small an issue) - after all we do live with this illness 24/7, which gives us insight that medical training cannot replace.

keep up the good work!
Jacqueline (scotland)

Unknown said...

You are 100% correct. Don't ever stop advocating for Tricia and Gwyneth. Stay strong.
Lifting you and your girls in prayer.

isaac's mommy said...

Thank you for continuing to share you family with us in spite of a few "bad apples".

Praying for you guys in GA.

Journo June aka MamaBear said...

And another Amen from me. There have been several times that me being pushy and determined with medical staff that something finally got done for my son that needed to be done! Medical staff are not perfect and make mistakes. I WILL question them frequently because they have made mistakes in my son's care. Hang in there and keep fighting for your girls. No one knows them better. Sending prayers and hugs.

Stacey said...

God Bless You, Nate!!! You continue to be in our thoughts & our prayers; along with both our Prayer Lists! All Our Love - Bill, Stacey, Josh, & Ben

Unknown said...

As somebody who spent lots of time in the hospital (and at home) with her dying father, and as a nursing student: RIGHT ON!

Violet said...

Rock ON!! I'm behind on my reading but I just had to respond to this becuz I totally agree with everything you said and I've never been in a situation even close to yours.

Unknown said...

I'm a little behind in my reading and I can't say a loud enough Amen!! I've watched nureosurgeon's not even look my sister in the eye while dealing with her in an office visit before she passed away! You're charged with the protection and headship of your family by God. May God bless you and your family in your efforts to take that huge responsibility seriously.

Anonymous said...

You are 250% correct. I'm also a CF spouse.

I'm sure the nurses hate me - but I don't care. I am there to make sure my husband can do what he needs to do - get better, and I can do all the worrying and coordinating.

Some nurses are awesome, and some aren't. Some are just dreadfully overworked and have too many patients. Same with doctors.

Last time J was in the hospital, there were SO many problems. Missing pills, extra pills, missing nebs, late IVs... After the first day - I printed out checklists. If something was late, I was at the nurse's station getting it straightened out. Plus, for the bonus - the endocrine "doctor" forgot to mention 90% of the side effects for the med he wanted to give J. Yeah. When I saw the orders for "T3 for bone pain" on his chart... there was some researching done on my part. I was livid - and that med went straight back out of the room.

It's not even just for people with chronic problems like CF. When I had my appendectomy/complications, I had my mother stay with me (she's a nurse and I didn't want J missing sleep or nebs!). My hands/arms were a mess, small veins and a number of blown IVs (I looked like J had beaten me)... I started having a panic attack when they disturbed me at 1 am and started jabbing into things all willy nilly. I was in the ICU - and I started setting off all the heart alarms. My "nurse" had the nuts to tell my mom I wasn't having a panic attack and I would be fine and go back to sleep (I was having problems sleeping already). She got a serious earful - Mom's a pysch nurse. I had anti-anxiety meds 15 minutes later. Would that have happened without her there? No.

Patients need an advocate!

Anonymous said...

As I former cancer caregiver I agree with you 100%. If you do not advocate for your health and care or that of your loved ones NO ONE will.

Anonymous said...

You are 100% right Nate. We have had probelms in the past with inexperience or other issues keeping memebers in our family from recieving adequate medical care. A lot of people do not have the courage to stand up to DR's or nurses. Good for you! God bless you. We continue to pray for your family daily.

~Jen Rackley

Jeannie said...

I agree 100%. You just be the best hubby and daddy to your girls and don't worry about everyone with negative comments. As their husband/father, you are responsible for their care. God has intrusted their lives to you. You do what you got to do and don't worry about offending anyone. I pray that God continues to direct your path and helps you decern what is best for your family. (and prayers for health and happiness, of course!)

Anonymous said...

YOU ARE AWESOME.... DO NOT EVER STOP DOING WHAT YOU ARE DOING. YOU ARE YOUR WIFES ADVOCATE AND YOU DEMAND ANYTHING YOU FEEL SHE NEEDS... HANG IN THERE.

Hugs and Prayers

mi said...

Nate,
Follow your heart. You are absolutely correct in that there is nobody with a great concern for you family than YOU. If someone doesn't like your proactive role, well...that's their problem. I have been following your story recently, and it would be impossible not to feel emotionally involved. And, I don't even know you! No, I have never experienced any of those circumstances you've listed, and could therefore never know better that you would. The medical staff must work with you. Everyone bringing their respective knowledge and care to the situation is what is helping Tricia and Gwyneth to thrive.

Sarah Kuhner said...

I have been following your story for about a week now. Congratulations on Tricia getting her lung transplant. That is soooo awesome. I just wanted you to know: I am a NICU RN in California. I totally agree with your post. A few nurses get irritated when parents are very involved but it seems that it is cause it takes more time for them and sometimes because you do know better. A good nurse should always be willing to listen to you and work out what is best for the patient. If it doesn't feel right it very well may not be right. Good job being an advicate. I wish all my babies had involved caring parents like your baby. Your wife is one lucky woman to have someone like you.

wolfbaby said...

you are absolutly right about this!!! No one knows the situation better then you and no one is a better advocate for your family then you. I know from personal experience that it is essential to speak up when you feel something isn't right. The best of wishes to you and your family will keep you in my prayers

Valerie said...

You just keep doing what you're doing and pay no mind to the 'armchair doctors' out there.

Emily (Laundry and Lullabies) said...

You are absolutely, 100% correct. When my mom was in the ICU recovering from a stroke, my dad was in your shoes. Even though the doctors had the medical training, my dad was the knowledgeable advocate. Most of the time he didn't need to argue with anyone - but a couple of times he did and it was CRUCIAL. God bless you for taking your role as protector seriously. Your wife is lucky to have you.

MamaOnABudget said...

I read everything but don't post much. I just needed to say that you're right. You're right, you're right, you're right. I don't believe that any nurse or doctor or intern or radiologist or phlebotomist or cafeteria worker tries to do things to hurt a patient. But the fact is that they know your patient for 5-20 minutes a day and they know their specific "window." You know your loved one 24/7/366 and the whole picture.

Keep fighting for your girls. And, God forbid you ever need to be advocated for, I pray you have such a strong advocate at your side as well.

Anonymous said...

Thank you for reminding me about this entry. I read it "back in the day" when you first wrote it. This helps me, it affirms that what I am feeling IS right. I am mama, hear me roar. I am Stellan's advocate and I WILL speak up. Thanks, friend.

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