Sunday, November 15th

Yesterday was a great day here on the Hill.  We watched the Dookies lose to Georgia Tech and then we watched and heard the Tarheels in an awesome game against Miami.  It was the best game ever!  Nicholas needed a pick-me-up because he wasn’t feeling the best in the world yesterday morning.

Other than bood sugar issues, he’s had a pretty good weekend.  They have added another antibiotic.  This one is inhaled through a breathing treatment.  He hasn’t been able to tolerate it in the past because he has floppy airways called bronchialmalaysia.  With his airways already being this way, breathing the drug would make his airways collapse and he would cough more.  They wanted to give it another try because it would put an antibiotic directly in the lungs.  Tobramycin is a popular drug and he has taken it through his IV, so we know he is not having a reaction to the drug itself.  He seems to be tolerating it pretty well so far.  He is doing his regular breathing treatments to open up the airways, then the therapist comes in for his chest pt, and after all of that, he gets the inhaled TOBI.

The doctors are hoping this will help to get his lung function back up at least into the 60’s.  Nobody likes the fact that they have been remaining down in the 50’s for a while.

So today, I am praying for continued weight gain, that the inhaled drug will help to open his airways more, that his lung function will climb higher than the 50’s, and that he can come home on Friday as planned.  Thank you all so much for your prayers and support.  It means a lot.

Robin

Chest PT

You all read here about Nicholas getting chest pt twice a day at home and four times a day while here in the hospital.  This is beneficial to all patients with cystic fibrosis because it helps to loosen the mucous in their lungs.  Some of you have seen him get his pt, but many of you haven’t.  When Nicholas is at home he uses a vest to get his therapy.  I’ve put a video up here to show how that works.  When he is in the hospital, he gets what we call “manual” chest pt because therapists use their hands. 

One of Nicholas’ favorite therapists worked his last day at the hospital today.  He is going to Australia for a year and a half to work towards his Master’s Degree.  He let me video part of his therapy session with Nick this evening so you can get an idea of what he has to do.  Each session lasts about 25 minutes.  He “pats” 5 different areas of Nicholas’ body – his chest, each of his sides, and upper and lower back for 5 minutes each.  Here is what it looks and sounds like.  Nicholas is humming in the video – that’s why you hear me tell him to cut it out.

We will miss you Taleb!  Good luck!

A Message From the Heart

Nicholas has a great friend named Monica.  She is 17 years old and she has cystic fibrosis.  We have known their family ever since Nicholas was diagnosed.  Her parents were a great support to us at that time and we have kept in touch over the years.  When Nick was in the hospital in June, Monica was as well.  That was the first time in all these years that they have spent any length of time in the hospital at the same time.  They instantly became great friends.  She has been admitted again this go round. 

I have a MySpace and Monica is listed as one of my friends so we can communicate even we Nick is not in the hospital.  There is a place for journal entries, blog entries, etc.  A couple of days ago, Monica posted a message about how she feels about her condition, her faith, and her relationship with Christ, hoping that others could get a glimpse of what she and Nicholas live with every day.  It really touched my heart.  It is an awesome testimony.  She gave me permission to share it and I wanted to put it up for everyone to read. 

No one will ever understand how we feel. No one will ever know what we go through each day of our lives. We don’t want your sympathy, we don’t need any special treatment from anyone. We are tough because we have grown up only knowing to live this way. Cystic Fibrosis has made us who we are today, we have more respect for ourselves then anyone ever will. It has taught us to be strong! If you give up…it’s over…but that’s not what were about. We are about persevering and making it through each day. I’m not saying that we don’t ever get down, or that our hearts are never heavy. Because you would be surprised how much we think about our disease each and every day. It’s not that we feel bad for us though, we feel guilty. We feel bad that our parents have to pay so much money for our medications, and treatments. We feel like we hold our families back, and our friends as well. At the end of day, all I ever want to do is say I’m truly sorry. And I’m sure my friend Nick Griffin feels the same way.

No, we could not help being born with Cystic Fibrosis and we do get down or worried at times…but I have never wished that I was born any different. God gave me CF because he knew I could handle it, he knew I would keep faith throughout my life. Not only would I be strong for myself, but I would be strong for God, and for my family. There is a reason for everything…don’t you think? If not, well then that is your own opinion. But I know in my heart that I can help people in tough times and trials in their life.

I hate hearing people complain about drama, and boy/girl problems, or any kind of high school crap there possibly is. You should be glad and feel blessed that you were born HEALTHY! God gives you healthy lungs and what teenagers do…they smoke…killing their lungs more and more each day. Just think about it….healthy lungs…and you ruin them. When some people (me and nick) are born with crappy lungs and we would give ANYTHING to have healthy lungs…and you better believe that we wouldn’t be stupid enough to smoke.

And for the teenagers who complain about their “love life” or any kind of teen drama. GET OVER IT! If I have to hear about suicide because of someone having a “broken hear”…I will scream! You have so much to live for, you could be such a good influence on people, and you’re over there worrying about a high school relationship…come on…get a life.

How about instead of spending your time feeling sorry for yourself you actually do something to help people. Something that will be remembered in life. Pick up a bible, read it, learn about God, get to know Him. Because trust me….without my Lord Jesus Christ…I would not be here now, I would not be able to get through each day, and I would not have anything to live for. I live for God, and I know He is my personal Savior! Jesus Christ died on the cross for me….and you as well. He is there for you always, you think you are done with life, and you think that giving up is the answer…think again! God is the answer! You just have to believe with all your heart!

Psalm 30:2
O Lord my God, I called to you for help and you healed me.

People who say…”well then why aren’t you healed yet, there must not really be a God if he isn’t going to answer your prayer right away.” …If you are someone who says that…just listen to me right now….There is a reason for everything, there is a reason God wanted me to be born with CF. Each and every day that I live with Cystic Fibrosis I grow stronger in my faith. I’m never going to give up on God and I know for a fact He would NEVER give up on me. My God is always giving me strength, during my toughest times and all the time. I know God is right by my side during this fight, He will never stray, nor will I.

God is good all the time,
All the time God is good.

=] thanks to all if you truly read this, and let it sink in some.

Good Night

Last night was a much better night of sleep for both of us.  We are still having respiratory department issues, but they are never resolved when we are here so unfortunately, we are forced to live with them.  Other than that, things are going along as they usually do.  We just have to let the antibiotics and the physical therapy do its job.  He will be having another lung function test on Monday to see of he has improved after this first week of antibiotics.

Nick’s friend Monica, (who also has cf) is having a bronchoscopy today and is coming into the hospital.  Will you guys say a prayer for her?  She has been really sick alot lately and she is not feeling well at all.  She has been in the hospital more that Nicholas has this year.  She is very worried and tired of being sick.  I can’t imagine what her family is going through.  BUT the one thing she has on her side is that she is strong in her faith and she knows that God is there with her every step of the way.  She is such a fighter.  Our thoughts will be with her today.

“What’s Up With Nick” in the Spotlight

A few weeks ago, a comment was left on the blog by Ashley at izea.com saying that they wanted to feature this blog on their website as the “September blogger with a Cause.”  Of course I agreed and they posted the blog on their site.  It is a great honor for the blog to be spoken of so highly and I am just so humbled by what has been said.

Here is the link.  Check it out and spread the word!

THANKS ASHLEY!!

Role Reversal and Tarheel Football

Saturday, Nicholas had a real treat.  He and John were given tickets to the first UNC football game of the season.  Except for the rain that came later, it was a great day.  They had an awesome time.  (Michael thank you for the tickets and tell whomever gave them to us thank you too). 

This also gave Nicholas the chance to VISIT someone in the hospital while he was there.  His great friend, Monica, has cystic fibrosis and she is in the hospital now.  She battles with her lung function like Nicholas.  So they dropped by for some fun with her and the nurses. 

Here are some pics from the day…

Going Home

We are going to the car to go home.  The doctor is happy with his numbers.  He wants to continue with the oral meds for another couple of weeks and he wants to see him in October.  So all is good for now.

Thank you for your prayers!  See ya back in Edgecombe County!

Clinic Visit

We are in the clinic and waiting for Nick to go back for his lung function test.  His weight was down a bit (107.3lbs) but that was expected because he went to camp without his feeds.  I will post as we go along.

Email From the Doctor

We finally received an email from Nicholas’ doctor.  He is going to try to schedule a bronchoscopy for Nick on Tuesday, July 15th. 

A bronchoscopy means that Nicholas will be put to sleep and the doctor will go down into his lungs with a lighted camera to look around.  They will be looking for areas that are inflamed or show any other signs of infection.  They will also squirt in some normal saline and then suction it back out to test to see what organisms he is growing.  Over the last few months he has been growing staph and pseudomonas, but sometimes a patient cannot cough up some of the things that may be growing down deep in there.   Hidden bacteria can cause a decrease in lung function.  This is a way to make sure they haven’t missed anything.

Nicholas is not happy at the prospect of having to have this done and at the fact that we may not be able to go to camp.  Many things will determine whether or not we can go: what they find in the bronchoscopy, if he has to go on IV antibiotics, and if Miranda can have her cast removed, among other things.  He didn’t get to go last year because he was in the hospital, and he has been so excited about going to Caswell.  I told him that if we couldn’t go, maybe we could go somewhere else before school started back, but that isn’t the same and I know it isn’t, but what can I say?

We are praying that nothing new comes up in the cultures.  I know that everything happens for a reason, and everything is to glorify God, but this 15 year old is really having a hard time with that one.  Pray for peace for his heart.  Pray that he (and all of us) can accept whatever comes.   I’ll let you know what time the procedure is scheduled.

In His Grace, Robin

Update on Amie

Mama posted this on my other blog so I thought I would share since so many of you have responded to Amie’s story and have been asking how she is doing!  Thank you all so much for your prayers for her.  This is truly an amazing miracle..

AMIE CALLED ME TONIGHT. SHE SOUNDED FANTASTIC.THEY ARE STILL AMAZED AT THE MIRACLE GOD PERFORMED ON HER. THE DOCTORS JUST STARE AT HER AND SHAKE THEIR HEADS IN AWE. HER DR. SAID IT WAS A MIRACLE FOR HER TO BE ALIVE. HE PERSONALLY CARRIES HER BREAKFAST TO HER EACH MORNING. SHE WILL BE MOVED TO A REGULAR ROOM ON MONDAY, IF SHE CONTINUES TO IMPROVE.THEN NEXT WEEK, IF SHE STILL IMPROVES, THEY ARE GOING TO TRANSFER HER TO CASWELLS IN KINSTON WHERE SHE LIVES. AINT GOD GOOD.

Our God is an Awesome God!

I just received a phone call from mama – I didn’t want to answer the phone. 

All I can say is that God is an almighty powerful God and He is merciful and I am so in awe of His greatness.  They went in and took Amie off the respirator this morning and she is sitting up in the bed, breathing on her own and complaining because she is hungry!  The doctor says that he has never seen anything like it and that he cannot believe that this is the same girl he was in the room with yesterday. 

So many people were praying for God to work a miracle and He did.  The family is so elated with joy.  Phil went straight out and called mama!  Thank you God!  Thank you God!  I am so filled with joy, and thankfulness, and I have been humbled by the works of God.  I cannot believe that yesterday I was writing about today being the last day of Amie’s life.  What a “Doubting Thomas” I was.  Never again. 

Thank you all for your prayers for our family and for Amie.  God was listening of course.  We are so blessed to be a witness to His works.  Continue to remember her as she improves and strengthens.  We have been given a gift of more time with her.  We are so thankful.  WOW!!!

Update on Amie

Mama called me a little while ago.  We are not going to Duke tomorrow.  They are going to take Amie off the respirator.  The doctor is not sure how long she will be able to last after they remove it, but he is sure she cannot breathe on her own.  Amie has fought a long hard fight and tomorrow may be the last day of her life.  If it is, we all will be at peace knowing that she lived life to the fullest of her abilities that she embraced her life in every way she possibly could.  She knows we all love her and we know she loves us.  This is so hard for me because not only am I losing someone I love, I am losing her to cystic fibrosis…  UGH!!  I have to take refuge in the fact when she does take her last breath, that she will not be in anymore pain, she will not have to take any more medicine, she will not have to have someone pound on her anymore.  She will be in God’s safe arms, in His presence.  I pray to God for peace for her and all of the family.

Robin

How God Prepares Us

Some of you may or may or know that my mama and daddy were foster parents when I was growing up.  We had many foster children (about 21 I think) over the years they were able to do it.  One of the children, our second to be exact, was a baby that was given up for adoption.  It was a girl and we named her Amie.  Mama got to name the newborns.  I always thought that was cool.  ANYWAY, babies usually stayed until their six week checkup and then they went on to their adoptive parents.  In this case, that didn’t happen.  Amie was sick.  She was sick all the time.  She cried all the time.  We took her to the doctor and they couldn’t tell us what was wrong.  Then they sent us to Duke.  It was there that they told us Amie had cystic fibrosis.  Back then the diagnosis was not good.  They told us that Amie would not live to be a year old (unbelievers) and we began all the treatments to make her as comfortable as possible, we accepted the fact that she would not be adopted, and we resigned ourselves to the fact that she would proably die in our care. 

We learned all about enzymes (back then it was a powder called viokase and you mixed it in baby food) that she had to take to digest her food, about chest pt where we had to beat on her to get all the mucous out, and all about breathing treatments.  Back then it was called a mist machine.  We, as a family, learned all about cystic fibrosis and how to treat it.

Amie was with us for almost 2 years when we got the call that there was a couple interested in adopting her.  We were filled with a mix of emotions.  Amie had become my sister.  We loved her and were caring for her with everything we were.  We didn’t want anyone taking her away.  BUT at the same time, we were thrilled to know that there was someone out there who was willing to see past all that ugliness of her disease and love her for the sweet child she was.  We got to meet the couple.  They were so nice.  They came to our house and talked to all of us.  We told them the hard truth of her daily routine, but to be quite honest, I don’t think any of that mattered once they saw her beautiful face.  They did adopt her and we have kept in touch all these years.  One of my favorite memories is spending time with them and their family during summers in Wilmington where they live.  On April 28th, 2008, Amie celebrated her 29th birthday.  Praise God!!  What a wonderful example of God’s greatness and power.

Knowing this child, going through all of this with her, affected our whole family.  We all became advocates for cystic fibrosis.  We participated in all kinds of fundraisers over the years for cf.  When I was grow up, I worked for the Cystic Fibrosis Foundation for about two years.  It helped to know about the disease.   Ultimately, knowing this child, growing up knowing her and her family, helped us to save Nicholas’ life.  Doctor’s argued with me when I suggested that cf was what he had, and it took us 6 months of moving from doctor to doctor to get someone to agree that he needed to be tested for it.  There aren’t many people that can look back over the years and see the path that God led them down to help them in their lives.  I know that things happen for a reason, and knowing Amie helped prepare me for my adult life and what I was going to go through with my own children.  I am so thankful for that.  God is an awesome, wonderful God.  He gave the precious gift of knowledge for the future.  I am so blessed to be able to look back and see why I went through all those things.

Saturday night, I got a phone call from my mama saying that Amie had been airlifted to Duke.  All I know at this moment, is that she is in ICU, in respiratory failure and she is on the respirator.  I am waiting on a call from Carolyn, her mom, and we (my mama and I) are going up to Duke tomorrow.  Amie’s dad, Phil, is not in good health and cannot make the trip, so Carolyn is there on her own.  Pleae pray for this family.  I don’t know if she is eligible for a lung transplant, if she is on the list, or what.  All I know is that my sister is in the hospital and the outlook is not good.  I cannot imagine what they are going through at this stage in Amie’s disease.  I hope it will be a long time to come.

If this experience has taught me anything, it has taught me that God has a plan for all of us.  That everything MOST DEFINITELY happens for a reason and we are blessed to be able to marvel in His greatness.

Prayer Requests

A few days ago, I posted about the incredible story of Meagan VanEngan, a high school senior who has cystic fibrosis.  I first read about her at Nate Lawrenson’s blog.  I have also been reading about Haley Palmer.  She is a 12 year old cfer waiting for a lung transplant.  Haley passed away Friday afternoon around 2:30pm.  From reading about her, you can tell she was a real go-getter.  She always did her best not to let anything get her down.  Please pray for her family as they go through this very difficult time. 

Stories like Meagan and Haley’s make me realize how lucky we are right now and they also make me realize how important it is to find a cure.  Please consider making a donation to the Cystic Fibrosis Foundation so Nicholas and others like him will have a brighter, longer future ahead of them.

Also, keep Nate and Tricia in your thoughts and prayers.  She is back at Duke, has had two procedures done in the last two days, and is dealing with unknown territory.  You can catch up with them here.

Thanks,

Robin

The Mommy Hat

WARNING!! – I have to vent.  If you would rather not have to read the venting, no offense taken, skip down to the last two paragraphs and have a great day!

Because his pancreas doesn’t work completely, Nicholas has to take enzymes every time he eats.  His body can’t digest fat and proteins, so he has to take 3 to 4 capsules every time he eats.  Because of the cf, it is hard for him to gain weight, so about 5 years ago they put in a feeding tube and he gets 4 cans of supplemental formula over night to help with that.  And of course, because his pancreas doesn’t work properly, he has to take 5 of those enzymes at night when he gets hooked up and 5 in the morning when he is finished.  It’s not life or death for him to forget to take the enzymes, BUT at the same time, if he doesn’t take them, his stomach will not be happy, and if forgotten more than once or if he stopped taking them at all, he would suffer from malabsorption.  He would lose weight and, let’s just say, it would not be a very healthy decision to make.

We don’t realize how many hats, we, as mothers wear in a days time.  We have the mommy hat of course, then there is the doctor hat, friend hat, personal driver hat, cook hat…you get the picture.  Well, this morning I had my mommy hat on.  Don’t make me put on the mommy hat.  You may not like me with the mommy hat on.  First let me say that, if any staff member of UNC Hospital is reading this, I am not directing this at any one person.  We love the nurses and doctors and everyone here.  Having said that, I realize that nurses get busy.  I realize that taking his enzymes is not a life or death thing if they are forgotten once.  BUT, last night the nurse did not remember to give Nick the enzymes before his tube feeds.  I remembered, and he got them – no harm done.  Sometimes nurses forget in the mornings so every morning I ask Nick if he took his enzymes and this morning he said no because no one woke him up.  There are other things that make this more disconcerting, but I won’t mention those because, well I just won’t mention them.  We are already having problems with digestion (to say more would be TMI) :o) and I just want my child to get what he is supposed to get.  If I am responsible for making sure his meds are taken, then I will make sure he gets them, but If a nurse is responsible, then she/he should make sure he gets them.  So today, Nicholas will have stomach issues.  Sorry – I had to vent…warned ya.

Good grief – I hate getting up first thing in the morning and having to deal with a problem.  ugh!!  I know, I know, I shouldn’t worry about such insignificant things, but the mommy hat had to go on.  They are still very concerned about his weight (that is another reason why this is so important) so they are going to make sure he is weighed at least every other day.  We went to bed late and got up early.  Nicholas is finishing up his exams today.  He hoped to do that yesterday, but he had a bad migraine and he slept if off for most of the afternoon.

We are praying for weight gain and continued improvement of his cough and lung function.  Hopefully, we will be having another test on Thursday.  I hope you all have a great day.  Check back in tomorrow – same bat cave, same bat station.

Robin

Another CF Story

To look at her, you’d never know Meagan VanEngen is living with Cystic Fibrosis.

But the vibrant, happy and successful 18 year old takes 12 medications daily, underwent six surgeries in just six years, from 2001 to 2007, and is prone to four-week stints in the hospital with lung infections several times a year.

On Friday, May 31, the Maple Valley High School senior took to the stage — graduating with a 3.992 grade-point average as co-valedictorian of her class… (Read More)

Stories like Meagan’s and Nicholas’ are becoming more and more common because of support for the Cystic Fibrosis Foundation from people like you.

The Vest

A typical breathing treatment for cystic fibrosis, using a mask nebuliser and the ThAIRapy Vest For those of you that have never seen Nicholas’ vest.  This is what it looks like.  It is sort of like a life vest with adjustable shoudlers and straps across the chest to adjust as he grows.  The hoses (his are a manilla color) are connected to a compressor that, when it is turned on, fills the vest with air.  Then he has a button that he sits on that tells the comprssor he is ready.  When he sits on the button, the compressor lets the air out of the vest and refills it at a fast rate, causing it to vibrate.  You can adjust the speed so that it can go slower or faster.  This helps to break up the mucous in his lungs so we don’t have to beat on him.  While he is in the hospital, he doesn’t use the vest.  They do manual chest pt on him using their hands. 

Nicholas also has breathing treatments, but he doesn’t use the mask anymore.  He uses a mouthpiece.