Sharing the Reality of CF with Tyler

For the past week Tyler has made comments about wishing he didn't have CF.  He says he gets tired of doing his treatments and he doesn't like having to go to the hospital.  After our last hospital stay in May, he declared that he would NEVER go back to the doctor/hospital again.  Are you seeing a pattern? 


Yesterday Bran called me at work and said he didn't think Ty was doing his treatments.  I talked to Ty about this and he repeatedly assured me that all was well and he was doing his meds.  I then had him to tell me how many vials of Cayston he had left (yes, I counted them before I left for work in case this scenerio came up).  Turns out he had indeed NOT done his treatments like he said he did.  This was at 10am.  I demanded they be done immediately.  Fast forward to 1pm when Bran calls me at work again to tell me that Ty still had not done his meds.  I knew what had to be done, I knew the fight that would now ensue.


Chip and I had a reality conversation with Ty that night.  I showed him a CF video on YouTube to prove to him that he was not alone.  That 70,000 other people, worldwide, shared his discontent with sometimes hourly treatments, IVs, endless pills and tough hospital stays.  I explained to him why those kids had to wear oxygen, why their eyes were surrounded by dark circles and how they probably wished they had his lung function (which is in the 80's) instead of the nearly non-exitent function they currently have.  He saw the fear and raw emotion of a CFer who desperately needed and wanted a lung transplant, and the immense sadness and emptiness experienced by a family who recently lost their son.  Their son chose to forgo a transplant because he had seen so many of his friends have them and then still die anyway.


We then talked about the many CFers who defy the odds, who live life to the fullest, who do things that healthy people don't/won't do and who refuse to give up or give in.  We talked about future plans and being able to go to college, have a family and live to be old and bald.  We prayed together and spent time talking about the things that weigh on his heart and mind. 


How successful was all of this?  I have no idea!!  I guess time will tell.  I can tell you that today my heart is incredibly heavy and my emotions are sensitive and raw.  I feel like I'm in a fog and I question how well I handled it. 


Two things I do know for sure:  I need to have a deeper faith and I need to educate myself, spiritually, on how to handle, guide and lead my son with God's word before our next heart-to-heart.

A Year Later

Isn't it crazy how a year can pass in the blink of an eye?  I've been beating myself up lately about not blogging, figuring that one day I'll look back and regret not writing down things we've experienced.  My mind stays on overload most of the time and my capacity for memory shows that fact. I must do better and there is no time like the present!!

So what's happened?

September 6, 2010 - We spent the entire summer in the hospital and boy did we miss being in the water!!!  I originally planned a trip to the beach but we opted for the water park at Emerald Pointe instead!  We had a blast!  Tyler was stoked to be in the water but his body struggled to keep up.  We took turns holding him in the wave pool because his body didn't have the juice to play very long. I could tell Ty noticed how weak he was. I didn't want him discouraged so I gently explained why he was feeling so tired. This seemed to help. He had a great day!

October 7, 2010 - Ty brought up his lung function from 68% to 96%!!! Talk about being on cloud 9. Our lung function has decreased since then but we're working on getting it back up. This month was one of the easiest TOBI months we've had. Ty was very compliant with his treatments.

October 29, 2010 - Today I found out Ty is culturing B-Cepacia. This news brought me to my knees. The strain he has is extremely rare so we're still finding out what affect it has on his lungs. The ABPA seems to be more of an enemy than the B-Cepacia right now.

November 2010 - Ty starts playing basketball and hurts his knee during practice. Ty went to an ENT doctor and she says there is no need for sinus surgery right now. Flonase works wonders.

December 15, 2010 - Ty injured the "growth plate" in his left knee and was fitted with a brace and crutches for a few weeks. Everything seems to have healed beautifully. Dr. Shapiro at UNC starts throwing around a hospital stay but we fend it off from December until April!!  We are Ultimate Fighters!!

January 2011 - Bran's science fair project made it all the way to the regionals!!  It was like pulling teeth to get him involved but once he started winning it was a different story. Yes, boys will be boys! His project was turning white carnations different colors.

March 2011 - We start Cayston and realize just how hard it is to do 3 treatments a day.... lets clarify this... we find out how hard it is to trust Ty to do the treatments without being told a million times! Lung function is down to 74%.

March 25, 2011 - I posted to Facebook: 

Last night Tyler said he wanted to tell me something really sad. I said "ok". He goes on to say that its sad that by the time I'm 40 he won't be here anymore. Today I am so thankful for the gift to be able to handle those hard conversations with love and grace, to encourage my children to exercise their faith and to remind them that they'll never walk alone. God, I give You the glory.

April 26, 2011 - We go in for a PICC, bronc and 2wk hospital stay. One of the research ladies showed me the culture from the bronc. It was green and very cloudy. She said if Ty was healthy it would be clear and you could see thru it. Dr. Stephanie Davis did the bronc and she said the mucus was coming down in streams in Ty's lungs. Not a good thing but we're prepared to get him back on track.  Once again I cringe at seeing him wear oxygen day and night to keep his saturation levels up. I am a realist. I know that one day this will be the norm. For now I'm fighting it.

May 4, 2011 - Ty accepted Jesus Christ as his Lord and Savior!  Reverend Daniel Flynn from Memorial Baptist Church came up to visit and led Ty in prayer.

May 9, 2011 - PFTs are down to 64%. Here's a note I posted on Facebook:

We're not going home today. Docs are concerned that the bacteria are resisting the antibiotics and that lung function and health will continue to decline. I learned quite a bit about bacteria and cultures today!!  Supposedly the cultures show that Ty's strain of B-cepacia is completely antibiotic resistant.  I learned today that this is actually a bit common and that although the culture says no antibiotic will treat it, you still have a chance that something will work against the bacteria.  The plan is to change antibiotics, increase pulmozyme, stay away from hypertonic and have the lab check various levels to see if other meds need to be increased.

Docs are thinking the ABPA is the main factor pulling down lung function instead of the rare strain of B-cepacia he has.   They seem at ease with the B-Cepacia, although we cultured 8 million of it.  They seem pretty concerned about the ABPA and don't want us to leave until they get it under control.  We'll do another week in here and re-check PFTs on Monday.  We'll also do a chest x-ray to see if it sheds any light.

Ty is ready to go home.  He keeps telling the doctors that he feels great but his attitude tells me otherwise.  Anytime he isn't feeling well he morphs into a different child. Its more than the usual 9-year old attitude.  For the past 2 days he's been ignoring people, giving them the bare minimum response.  It can actually be pretty funny and even Tyler gets tickled at himself.  I think its the feeling of being so ill you can't stand yourself.  The staff up here know him now so they give him a hard time, which makes it even more entertaining.  He snapped at the respiratory lady this morning, telling her he wanted to go home so she started singing very loudly that she wanted to go home.  He got tickled.  Sometimes laughter really can be the best medicine.

Here's to another week!!!

 **Throughout our hospital stay I had to MAKE Ty do schoolwork in an attempt to better prepare him for his EOGs. Before we were admitted I spoke with one of his teachers and she wouldn't even give him any work to do while hospitalized. Her words were, "He's not passing my class". I was determined to prove her wrong and I pushed Ty and encouraged him for weeks to do the same. He ended up having to retake his EOGs but in the end he PASSED!!!!

May 13, 2011 - We get home and our IV meds arrive only to find out that one of them is dispensed via an IV pump. I lost all composure, especially after I asked 3 different people at the hospital if all of our meds would be via the infusion balls. Thankfully one of the pharmacists from the IV company walked me thru the set-up and graciously allowed me to cool down. What a blessing he was.

June 3, 2011 - 7 weeks later (we were only doing 2 weeks), the PICC line is finally being pulled out of Ty's arm and wouldn't you know it the darn thing was stuck!!  It wouldn't come out. Seven nurses and a sedated Tyler later, it finally comes out. Talk about stressed out. Wow. We learn something new everyday!

June 12, 2011 - Bran accepted Jesus Christ as his Lord and Savior. I am so very proud of him. He willingly went before the church to pray with Reverend Flynn. This was a HUGE milestone for him because he was adamant that he would not do that "in front of all those people".

Now our lung function is up to 85 and the small airways are up to 111. We're happy with the progress! I've had to really stay on Ty about doing his meds and Bran is my hero for letting me know when Ty doesn't do his meds like he claims to!!  Its a work in progress. My prayer for now is that Ty gets a revelation about responsibility and does his meds without us having to stand over him 100% of the time.

As for me, I've started running in preparation for a 5k in October. I've come to really enjoy my runs and I feel so much better about myself. I start Western Carolina in the fall and I'm trying to get additional specialities under my belt as a General Instructor. Chip and boys have been total gems throughout all of this. They support me 100% and I can't thank them enough!!

My Return To Work

is coming up on Monday!  I've been out with Tyler since June 10.  Wow!  It's been a long and tough summer!  I work in a maximum security (adult male) prison.  My co-workers have blessed our family beyond belief during Ty's recent hospitalizations.  Many of the officers don't even know who I am, yet they gave from their hearts and prayed many prayers for us. I am so grateful to each and every one of my family, friends and co-workers.

Ty's cough seems to be disappearing except for an occasional bout. I have to remind him to cough to keep it loosened up.  He is still able to cough mucus up and out so I am pleased with that. We've gone from doing treatments, IVs and medications nearly 'round the clock to only three times a day. I keep thinking there is more we're supposed to do and have to remind myself that this is it!!

The Prednisone has his face puffy and he's beginning to sneeze and fill a kleenex when he blows his nose. It also has a little blood in it so I'll keep an eye on that. Bran, my non-CFer has also been sneezing so it must be something in the air or "seasonal". It usually takes a few days, but Claritin works wonders for Bran!

Well, that's about all the news that is news for now!  The heat continues this weekend so everyone keep cool!

Back in Business!

It has taken me a little bit to get my page working again.

But now I'm back in business!

We went back to UNC on Thursday and had Ty's PICC line removed.  His lung function increased from 60 to 68%.  We've stopped all IVs, Zyvox and Septra.

The doctors did a "test" with the Prednisone to see how Ty's lung function would react to 5 days of 50mg tablets. I'm thinking he responded well with an 8 point increase in his FEV1.  So now we're doing 40mg of Prednisone every other day.

We also stopped TOBI and are back on our 28 day off/on schedule.

We're still holding off on the Hypertonic Saline as well.  I think the main goal is to get Ty's lung function back up and then try the Hypertonic to see what it does to him.  It may be that the 7% is too harsh and he needs to bump back down to the 5%.  We'll cross that bridge when we get there.

A big issue for me, this weekend, is spending time with Bran. I promised him that we would go get school supplies, just me and him.  We all know that it is really important to him that he gets "Bran" time since we focus so much attention to Ty's illness.

We signed Bran up for soccer and boy is he excited!! To tell the truth, I'm pretty darn excited about it too!  I love being on the ball field.... I'm not prejudice over the type (football, baseball, softball, basketball, soccer, etc)... I love them all!

Our Journey Begins

      ... a place where dreams come true
 
            ... a special wish for a special kid

                   ... a lifetime of memories

                         ... the highlight of a kid's summer

                               ... an everlasting smile

Today we received confirmation that Ty is eligible for a wish! I've always been cautious about not applying while Ty was so young. I want him to remember this very special event in his life. As we take more and more hits with his health, I figured it might be a good idea to start the paperwork. Here's to hoping his greatest wish comes true!!!!

Home Sweet Home

We made it back home and boy does it feel good! It usually takes me a few days to realize how good home feels. While we're in the hospital my brain flips a switch and doesn't crave or 'long' to be back home. I guess my body focuses on the task at hand and adapts to whatever situation we are put in.

Hospital discharge was much more smooth this go 'round. A persistent issue is not being able to get the meds we need from the pharmacy. Thankfully the hospital called in advance for the antibiotics, however NO ONE has Vitamin K around here! It took me from Friday until Tuesday to get it. So Ty missed his Friday and Monday dose. This is definitely one to remember the next time we're released.

Ty is doing an AWESOME job with doing his meds and treatments this time! Wow!! I could not ask for anything more! It makes it so much easier when he does what he is supposed to do. I could get used to this!

PICC Line Issues

Today the home health nurse attempted to draw blood from Ty's PICC line for levels related to the Tobramycin with no avail. She tried flushing it with Heparin several times but nothing worked. She ended up having to stick him for the blood work. 

The 1st stick didn't take so he opted to have his finger pricked.

The finger prick worked well but didn't produce enough blood.

Ty agreed to another needle stick and this time: SUCCESS!!

Tomorrow we're headed back to UNC to have the PICC team clear the line.

No Place Like Home

We busted out!

      Flew the coop!

            Bid farewell!

                   We were released from the hospital and now we're back home!!

Hospital Day 13 (Tuesday)

Tuesday I woke up feeling terrible. I felt incredibly weak and all I wanted to do was lay down and sleep. So that's pretty much what I did... all day long!  The nurses stepped in and made sure Ty was well taken care of and had plenty of company.  I did manage to get up and play the Wii for a little while.

Hospital Day 14 (Wednesday)

Today was Ty's birthday! It was certainly one to remember! So many people came together and raised money to make Ty's wish come true.... to have a "PSP Go".  The generosity, love and support of complete strangers is mind-boggling. No matter how bad things get for us, there will always be so many other families that have it worse. One of my weaknesses is not acknowledging the strength, faith and test of endurance that our family faces on a daily basis. When people tell me that they could never do what I do, that I'm one of the strongest people they have ever met... I feel like I don't deserve that, that what I do is not extraordinary. To be honest, it hurts to think about it. When I make myself stop and acknowledge the struggle that we face and attempt to conquer each day, it simply brings me to tears. I don't want this for my life, I don't want it for my family and I certainly don't want to see my son fight to breathe.

I know with all my heart and soul that God chose me to be Tyler's mom.

He saw something special, something strong, unmoving, determined, spirited and able to carry the load.

WOW! God has high hopes doesn't he!!  ☺

I firmly believe that families of special needs children are hand-picked, chosen with purpose. I also believe that all of us possess the above characteristics and that sometimes they're only accessible through God's mercy and grace.

We are certainly no better than other families who take care of sick, elderly or disabled loved ones. There are  families who adopt children knowing of their medical conditions, people who voluntarily choose to care for the sick and disabled. All of these people are gifts sent from above. They too, I believe, are hand-picked for the task at hand.

My favorite saying, the one that helps me keep pushing is, "God will never put more on me than I can bear".  I also love the song by Kirk Franklin with this verse in it.

In closing I would like to thank the many people who give to causes that don't directly affect them. It is so easy to fight for a cure for Cystic Fibrosis when your child suffers from it, but how many of us would be so involved if it didn't directly affect our loved ones?

The people that reach out to help others in need, often times complete strangers, are also special, hand-picked gifts from God.

They are equipped with hearts so big, smiles so warm and arms so giving that no other source could possibly provide.

These are the people that I look up to.

These are the people that I hope to become.

These are the people that can touch a child and leave a lifetime of precious memories.

These are the people that humble us as parents.

Thank you for being such an incredible blessing to our family.