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!!