Pictures from NC Children’s Promise

Nick with Jake Owen

Jake Owen visits with Nick

Nick on 96 Rock with Blade

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

The 4th of July

Everybody always likes the 4th of July holiday.  After all, we are celebrating the Independence of our country…right? Some people have birthdays on this day so that gives them something extra special to celebrate.  By the way, happy birthday Nancy!  I love you!

The 4th of July holiday holds something different for me.  Fifteen years ago today, John and I were at Pitt Memorial Hospital with Nicholas.  We had been agonizing for months; wondering what was wrong with our precious little baby.  Due to my suspicions as a mother of what he may have, we had been through several doctors and were feeling helplessly at the end of our ropes.  We could see that Nicholas was getting worse and no one would listen to us.  We were not in a relationship with Jesus Christ at the time so we had no peace…no comfort. 

After 6 months of trying to get a doctor that would test Nicholas for cystic fibrosis (cf), Dr. Taylor came in the room at 1pm on July 4th, 1994 and told us what I knew all along.  Nicholas had cystic fibrosis.  See what I didn’t realize was that even though we were not acknowledging that God was in our lives, He was there all along.  He had been with me my whole life preparing me for what we were about to go through as a family. 

Most of you know that my mama and daddy had been foster parents while I was growing up and we had Amie with us for a while.  She had cf and we learned all about the disease, medications, and physical therapy with her.  You can read more here (You should start at the bottom and work your way up.  Later, as an adult, one of my first jobs was with the Cystic Fibrosis Foundation.  God had been preparing me for this day.  He had been with me through all of it and He is still with me today. 

As I look back and see the steps along the roads of my life so far, I feel blessed to be able to see the proof of what my mama and my grandmother had always told me – “everything happens for a reason.”  For whatever reason, God has chosen me and my family to fulfill a task for him.  We may never know what it is.  We may never know who it is for.  We may be doing it now.  It may take years, months, a day, an hour, a moment…All I know is that where ever we go He is with us.  Whatever we go through, He is carrying us.  Whatever is in store for us tomorrow, He has it under control.

As you celebrate this 4th of July, be thankful that we have an independent country.  Pray that our country can stay this way and recover from its burdens.  Be thankful for your family.  Be thankful for your health.  Celebrate your life.  I thank God for the many blessings He has bestowed upon our family.  Things could always be worse than what it is.  We are thankful for the time we have been given.  Tell your family you love them today.  Reach out to the ones you don’t see everyday and tell them you love them too.  Celebrate every moment.

Happy 4th of July everybody.  Thanks for checking in today.

Love in Christ…Robin

CT Scan Results

The doctors came in today and told us that Nicholas’ CT scan showed lots of disease in his nasal cavities.  Yeah I know that kind of freaked me out too when I heard it.  Dr. Dellan must have seen my face so she went quickly into explaining that this was typical for a person with cystic fibrosis.  The only thing is that there is so much, that they think this is what is causing his headaches.

He had some nasal polyps removed several years ago, but they can come back.  So they are going to contact the ENT Team (Ear, Nose, and Throat) to get them to review the scan so they can decide if they need to see him now or if they want to wait until Nicholas comes back for his follow up visit.  My hope is that they will choose to go ahead and see him now – that way if he needs to have nasal surgery, he can go ahead and have it done now instead of having to go home and come back.  I would love for him to be able to go home and enjoy the rest of his summer.

Everything else seems to be going well.  He felt a little sick to his stomach last night so they stopped his feeds for about an hour.  He started feeling better so he was able to get back on the feed pump.  His weight is up to 114 pounds now.  They have changed his weight check to once a week so we don’t get any reports except on Mondays.

So that’s what’s going on up here on the Hill.  I’ll will post more when we here more.  Thanks for all your prayers and thanks for checking in.

Robin

Sunday April 5, 2009

Today has been pretty quiet.  The docs came in this morning while we were still asleep.  They left us alone – except for Nick of course.  Things are clicking right along as expected.

We had a couple of visitors today.  Christian and her mom came up to visit.  Please pray for their family.  For those of you who do not know the situation, John and I have known Christian and her family for a very long time now.  Christian had her daughter Lily Claire by c-section at just 24 weeks.  She weighed 1 pound and 7 ounces…I think.  A few weeks before she was born, Christian and her husband were told that Lily had cystic fibrosis like Nick does.   Being a preemie is hard enough on a precious little baby, but having cf on top of that just makes things more difficult.  Lily is here in the NICU.

Pray that Lily’s lungs will continue to heal so they can take her off that horrible respirator.  Pray that Christian and Travis can find some peace in all that is going on in their lives.  I pray that God will place a peace in their heart that helps them to know that there is a reason for everything and that God will continue to bless them through Lily.

I guess that’s all from the Hill today.  John will be going home later this evening so it will be just me and the Nick-meister.  🙂

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.

Getting Settled

The usual things are going on…answering questions, getting his medication straight and on schedule, starting his IV meds, getting his food scheduled, blood tests, physical therapy scheduled, respiratory treatments scheduled.  The normal stuff.  🙂

We had a pretty good night.  I went to bed at 11 – he went to bed around 1:30.  Then he woke up bright and early to doctors poking, breathing treatments, physical therapy.  Now we are already on the second round of breathing treatments and physical therapy.  They will be drawing blood two times this afternoon to check his IV medication levels.  The school teacher has been this morning to start getting everything straight so he can keep up with his school work.  He has his own computer now so he is in heaven.  🙂

I also just found out that Nicholas has volunteered me to participate in a study here at the hospital.  He has done it several times before.  All you really do is breathe into a tube.  It collects the condensation from your breathing and they use it to test for whatever they test for.  It’s pretty cool actually.  Anything to help find a cure – I’m game.

If anything interesting happens, even if it doesn’t, I will post every day.  Thanks for your thoughts and prayers.

Hittin’ the Road

We got the call saying that Nicholas’ room is ready.  We are packed and getting ready to go.  I’ll post his room information when we get there and get settled.

Robin

Update

Mama emailed my doctor this mornin and told him that i wasn’t feeling too good and he emailed her back within a couple of minutes. He said that he would recommend starting another oral antibiotic. So he called in a prescription for Augmentin 875mg twice a day so thats a pretty big dose. Im hoping that it will hold me off for a couple of more weeks, Im prayin it will but God only knows.

Love to all, Nick

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…

Tomorrow

Tomorrow (Friday) we find out about Nick’s cultures and what they plan to do – if anything.  Tomorrow will be the deciding factor in whether or not Nicholas goes to camp.  Whew!  What a week!  Praying for clear cultures and no IV antibiotics.

Going Home

Ok.  He is dressed, he is taking Tylenol, and we are getting our discharge instructions.  So we should be on the way out the door in about 15 or 20 minutes.  I will post again once we get home. 

Thank you all for your thoughts and prayers this morning.  They have definitely been felt by the both of us.  We thank God that this has been a very smooth procedure for him and that he has not been sickened by the anesthesia.  We are glad to be going home. 

In His Grace, Robin

In Post-Op Waiting

We have been moved to post-op waiting.  Here, they monitor him as he wakes up more and is able to move around, walk around, etc, and we get our discharge instructions.  Soon he should be getting dressed so we can go home.

In the Back with Nick

Update:  He’s awake and they are trying to get him ready to move out to the post-op waiting.  He is drinking apple juice and is being silly on the anesthesia.

They just came out and told me I can go back to post-op with Nick.  He is out like a light.  This is the first time I have been able to have the computer back here with me.  They were just taking the breathing tube out when I came in so that was an experience.  He looks like he is going to be asleep for a while and they are monitoring his blood sugar.

What the Doc Said

The doctor has already come out to tell me what they saw.  He said that there had been some changes on the right side lungs since his last chest xray, which was a week ago, and that there was quite a bit of bronchitis in the upper and lower airways.  They removed ALOT of secretions (mucous) from his lungs while they were in there.  Unfortunately, we will not know a more difinitive answer until the cultures mature, which will be Thursday or Friday.  This still leaves camp iffy for him right now.  He also told me that Nicholas’ doctor was somewhat befuddled over his lung function and is hoping these cultures can shed some light on what is going on down there.

He did really well and they are moving him to post-op as we speak.  Hopefully, I will be able to go back there soon.  I will try to post then if I can.

Going to Sleep

They just came and walked him back.  I accessed his port last night so they didn’t have to wait on an IV to be done.  They love that.  He also told them what to give him to put him to sleep and she wrote it down in her procedure notes.  She thought it was too funny and wonderful at the same time. 🙂 So we should be hearing something from the doctor in about 45 minutes or so.

In Pre-op

Answering all the questions – waiting for anesthesia.

Time for Bronchoscopy

Chapel Hill just called and said that Nicholas’ bronchoscopy has been scheduled for 9:30 am tomorrow morning.  We have to be there and checked in by 8:30 am.  agh!  So we will be leaving here around 6:30 am.  The good news is, is that we will probably be out of there pretty early, provided everything goes well, and I’m sure it will. 

Of course he can’t have anything after midnight so pray for a cooperative stomach and for a smooth time during the procedure.  He has had this thing done so many times that he even knows what to tell the anesthesiologist to use to put him to sleep.  I think they said this was number 24.  I will take my laptop with me tomorrow so as soon as we talk to the doctor, I will post whatever he tells us.  We know we are in the hands of the Great Physician and are trusting in His care.

In His Grace, Robin

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