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!!

Hospital Days 6-8

Tuesday Day 6

Today Ty's PICC line was replaced. They actually came to our room and did the procedure in here. No gas was used, only meds thru the existing PICC line to put him to sleep. He was so funny and I hate I didn't catch it on camera. I desperately need a video recorder! I'll put it on my "tax return" list for 2011!! 

We found out today that Ty has the Rhino virus. Not only is he on contact precautions but now he's on droplet precautions as well. This means he can't leave the room to go upstairs to the recreation room. 

As the medicine started taking effect Tyler became incredibly entertaining. He would start this long, drawn out laugh and everyone in the room simply couldn't resist laughing with him. He kept trying to lift his head and his speech began to slur. The procedure took about 30 minutes. An IV was started in his hand in hopes of using his PICC line for blood draws on Wednesday. The vancomycin is hard on veins so I was kinda nervous about how long the IV would last. Also today, Ty was on oxygen long enough for the procedure but that's it! His saturation levels are maintaining on their own! 

Wednesday Day 7

Once again Ty has not needed oxygen!! Since we've been in the hospital I have literally napped throughout the day and slept all night. I don't know if I'm exhausted, depressed or what. We used Ty's PICC line for blood work today but the nurse says the IV may remain until Monday so that Ty doesn't have to be stuck for more blood work. I'm pretty unsure of this. There is no way his veins will withstand vancomycin 3x a day for the next 5 days. This also brings up new questions.... "Does this mean we're keeping the PICC line for another few weeks?", "Does this mean we'll still be here on Monday?". Today Ty laid around all day. He only got out of bed long enough to use the bathroom. His cough seems to be subsiding, although when he does cough it is still wet and productive.

Thursday Day 8

Today has been awesome!! We had a visit from Chaplain Bird, one of my co-workers. He brought cards and gifts for me and Tyler. Tyler LOVED everything and was super excited. Today was the 1st time that Ty was up, moving around and acting like his old self again. I am so blessed and thrilled that Ty has the ability to get better and return to his old self. So many of our CFers talk about how bad they long to be able to walk again without being out of breath. A trip to the bathroom becomes a 45 minute ordeal and being able to fix their hair becomes a favorite past time. I am making a conscious effort to be thankful for the things Ty is able to do. We take so many things for granted: walking, breathing, singing, bathing ourselves, running to the bathroom, coming and going as we please with nothing major holding us back.

I'm not a "social butterfly" but I have to admit that I thoroughly enjoyed Chaplain Bird's visit. I was so tickled to get cards from my co-workers and to see Ty's face light up with excitement over his gifts. His gifts were inexpensive but were priceless and meant the world to him. I had no clue that a small puzzle would bring him so much joy. I had no clue that a card signed by my co-workers would touch me as deeply as it did. I have signed so many cards over the years for others but I never fully appreciated its impact.

I've not slept at all today!! Tyler and I have played all day long. We've thrown a few balls around in the room, we've colored and played cards. Tomorrow Ty does PFT's again. I truly hope and pray that we've improved!! Judging by the day we've had, I think we'll do good!

Oh, I almost forgot! This morning our nurse came in and questioned Ty's IV lasting until Monday. We both agreed to take it out. When she went to take it out we found out that Ty had already pulled it out during his sleep!!!!  It was still halfway in his hand so the saline was dripping into his tissue instead of his vein. Luckily, the saline drip was extremely slow so there was only a little swelling. Ty said his hand was a little achy but otherwise okay. 

Its late... I've not had a nap today... I'm going to bed.  ☺  Sweet dreams!!

Hospital Day 5 / Got Me Thinking

I'll start off by acknowledging that the 2nd phlebotomist to draw Tyler's blood did it in a matter of seconds with NO problems!! I graciously thanked her too!

Monday (Day 5)

Lung function (PFT) was down to 42 today. I was quite concerned about the decline but found out from my buddy Kevin that doctors have told him PFTs can actually vary by 2 to 4 percentage points. The doctors say Tyler sounds much better today, the wheezing and crackling have diminished. We're on contact precautions (MRSA and Pseudomonas) so we're confined to the room most of the day. He was, however, able to go play the Wii and play kickball with Physical Therapy upstairs. Thumbs up!!

Tomorrow we get our PICC line replaced. 

So today I'm ill and testy. It could have something to do with being a female so I'm justified!!! ☺

Things that got on my nerves today:

1. Blood draw at 5:30am. REALLY?? 5:30A.M!! Is that NECESSARY???

2. 6am Respiratory Therapist comes in our DARK room where we are SLEEPING! Tyler stirs long enough to do his albuterol and then drifts back to sleep. The guy then proceeds to wake me up to ask what time we went to bed.

           A few things to consider:

                a. I'm grown.

                b. Its none of your business.

                c. I don't answer to you.

                d. You wake me up again with a stupid question and the attitude is 
                    coming out to bite you. I'm just saying!

(By the way, I responded to him by firmly acknowledging that I put my child to bed at a proper time and that we are tired from waking up every hour by beeping IV and oxygen machines.)

Got Me Thinking.......

As Ty coughs more, I am beginning to see where it bothers other people around us. You can see the fear and concern on their faces that

1) something must be wrong with Ty since he's coughing so much

and

2) wondering if he's contagious.

We went to see Toy Story 3 and right before the movie started I began to wonder what I would do if he started coughing again. How unfair it would be to others to let him sit there and how sad it would be for him to miss the show and feel embarrassed at having to get up and leave every few minutes. I started getting anxious about Ty having a coughing fit and I had to mentally talk to myself about remaining calm and to cross that bridge as I come to it.

I also had that "Ah-Hah" moment that THIS is what all those other CF parents were talking about!!!

Colorful Bandages

Have you ever had a PICC line and the hospital gave you a super cool self-adherent colored bandage?? These bandages are sometimes referred to as "coban" or "vetrap".  You can purchase a roll at your local Tractor Supply.  YEP! You heard me!  We picked up a roll tonight for $2.29 at our local Tractor Supply.  You can view their website here. I've also read that you can buy it from your local vet. Another option is to call your local medical supply companies to see if they sell it.

Tomorrow we travel back to Chapel Hill to have Ty's PICC line pulled. The mucus in his chest is finally breaking up. I can't tell you how wonderful it is to see so much mucus in his "spit cup". A "spit cup" sounds gross doesn't it... almost like he's dipping snuff!  Ewww. LOL I usually give Ty a cup to spit his mucus in while he's doing his treatments. Not only is it convenient, but it also gives me a chance to monitor how much is being coughed up and what color it is. 

Ty continues to drag his feet on his treatments. This morning it took him almost 3 hours to get everything done and tonight it took him nearly an hour to get started. We're having to remove all distractions (TV, computer, game) during his treatments because he can't seem to stay focused and get them all done in a timely manner. 

Last night the mucus was pretty thick and loose in his chest and it became hard for him to breathe. He panicked and came running in my room, breathing loud and heavy. I could hear him wheezing and his pulse rate shot up. I calmed him down, had him do a breathing treatment and I did chest PT on him. It cleared up and he was fine. I hope this served as a wake-up call for him.

We've got our fingers crossed for tomorrow! Our last FEV was 84%. We're shooting for 90% this go 'round!

My blog...

is officially underway.  Wow!  I have much respect for everyone's pages now.  Designing these things are a lot of work when you have no clue what you're doing!  Well, there's no time like the present so shall we begin??

Tyler has had pneumonia since November 2009.  He woke me up screaming around midnight one night.  I thought he was just having a bad dream.  I went into his room and he was laying on his side.  He wouldn't move.  I assumed his stomach was hurting because he has so many tummy issues, but he assured me it was his side.  He was in so much pain and I didn't know what to do so I told him I would take him to CMC-Charlotte.  The ER was unbelievably easy and hassle free.  The ER doc immediately diagnosed pneumonia and put in a page to the on-call CF doctor.  To both of our surprise, we weren't admitted and was instead instructed to follow up with the CF clinic on Monday.  We did oral antibiotics for the next two weeks and was told our next appointment would be in 3 months.  I politely asked how we could be sure that the pneumonia would be gone in 2 weeks without a follow-up. So to ease my mind we were given orders to get another x-ray and bring them with us in 2 weeks.  The x-rays revealed that the pneumonia was even worse.  We went in to get our 1st PICC line and did home IVs (5) times a day for the next 3 weeks.

A month later we were back in the ER with the same symptoms once again.  This time Ty had strep throat and  again pneumonia.  Once again we followed up with the CF clinic on Monday.  During our visit  the doctor was heavily considering that we go into the hospital for a tune-up.  He said he would check on a few things and be right back.  When he came back he acted like everything was perfect, that Tyler was where he needed to be and he would see us in 3 months.  We were shocked.  Disbelief.  Did that just happen? Within 2 days Ty was once again screaming with side pain.  I called the doctors office and we were told to follow up with our Pediatrician.  You want me to do what???  Needless to say, the pediatrician's office repeatedly said we had to call the CF clinic back since it was pneumonia (and CF) related.  I finally had hem talk to Dr. Thevaos (we love you!!) and he agreed to see us. 

That was my final straw so we moved our care to the CF clinic in Chapel Hill, NC.  So far we have been totally blown away with the care that we've received.  We found out things we never knew, namely that Ty has polyps in his nose and that he cultured things I have never heard of.  We were given another PICC line and really high doses of antibiotics (Vancomycin, Ceftazidime and Septra) to combat the pneumonia, MRSA and pseudomonas.  Ty kept getting sick on his stomach and wouldn't eat, so we moved him home where we're doing 7 IV's a day, 8 breathing treatments and 60 minutes of chest therapy.  We go back to Chapel Hill on Thursday.

PFTs went from 62% to 59% (pre IVs), to 78% and 83% (during IV's).  Let's pray for even higher numbers on Thursday!