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…

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

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.

Clinic Update

The latest:  So we are eating lunch and then headed down to x-ray.  We have signed the consent for the bronchoscopy, but we won’t know when they are going to do it until his doctor comes back into town.  He has been in Europe for three weeks.  If we haven’t heard anything by Wednesday, we are supposed to call.  We should be home in a couple of hours or so.

Nick’s weight is up to 110.7 lbs, but his oxygen levels are 94% and his lung function is 53%; which is what is was when we were discharged.  We are waiting for the doctor to look at his last labs and his last chest x-ray.  And we are talking about scheduling a bronchoscopy to go in and look at his lungs – just to make sure we haven’t missed anything.  When the doctor comes back in and we know more, I will post again.

Robin

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.