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.

Hospital Day 12

Monday Day 12

Tyler and I slept in today. I woke up with my back achy and sore. I'm guessing sleeping in this chair has finally caught up to me! ☺ Ty hasn't eaten much today. He has played on the computer ALL DAY. I gave him a hard time about that. He agreed that as soon as he gets to level 20 he's going to put the computer away and spend time with me. Isn't that just adorable?  

One of our nurses (Jackie) has started giving Ty a prize every time she has to stick him to draw blood. The last 2 times she has given him Silly Bandz. You know he just loves that!!  Well today one of the respiratory ladies was talking about her two daughters (ages 3 and 5). Ty told her that she could take all of his dinosaur bands to her two girls and to tell them they were from "Tyler". I was floored. He earned those prizes from needle sticks and had a big enough heart to share them with two little girls whom he has never met. The respiratory lady was speechless. She said she would be sure to tell them about Tyler and to let them know that the bands were from him. I'm a proud Mom!

So the waves of sadness continue to roll ashore today. Most of the time I manage to keep it at low tide but if I'm not careful the waves start coming in fast. I just kept looking at Ty today, hoping and praying that I won't be put in a position to not be able to escape these thoughts (or that reality) EVER. I forgot to mention that Ty's birthday is on Wednesday. Its a bit of a sting to be in the hospital on this special day. On one hand I'm shouting to the mountain tops that I've had Tyler another year... on the other its bittersweet because without a cure I wonder how many more of these he'll have. Of course the happy thoughts far outweigh the sad ones so I remind myself to smile and enjoy it.

It is my goal to get a book written by a fellow CF mom SOON! I really think it will help me sort, calm and understand these feelings and emotions. I am so tickled to be able to say that I've hugged and kissed my Tyler-Roo a bunch of times today!!!  ☺

Lung function is scheduled for Wednesday. That's Tyler's birthday and it may very well be the day that we go home!!!!!

Hospital Days 9-11

Friday Day 9

I've really noticed a huge difference in Tyler's attitude. He seems so happy and calm. At the beginning of June, before we switched to UNC and started IVs, Tyler's attitude was almost unbearable. He was angry, impatient, beside himself, defiant and miserable. On the surface it looked like Tyler had a nasty attitude and needed discipline. I knew not to judge that book by its cover. I cannot imagine how it felt to have pneumonia for 7 months, to feel like crap day in and day out. To have my body starved of the nutrients it needs to stay alive when I'm well, much less how it feels when I'm sick and weak. To have to go to school and be expected to perform like a healthy child, to be judged with an "I don't care attitude" when I'm fighting for my life. To have my teachers send notes to my mom that my work isn't done, that I'm falling asleep in class and that I'm always forgetting to bring my pencil and the right book to class. To have so much pressure on me to pass my EOGs and then I fail them BOTH and have to be crammed with information for an entire week to retake them.... all the while struggling to breathe, fighting to make it through each day because I'm exhausted from my lung disease. Did I add the fact that I have to get up at 5:30am to do my treatments and then I'm up late to finish them before bed? 

I think... given the circumstances, I'd have an attitude too! It's really nice to see a smile on Ty's face again.

Saturday Day 10

Today Bran, Me-maw, Papa Dale and Chip came to visit with us again. Me-maw stayed with Ty while Papa Dale, Bran and I went to Target. I really enjoy spending time with my daddy and my son. Those two love to argue and they are so funny together. I got Ty a Nurf target set and 2 balls that we can throw around the room. Bran and Ty both had a blast shooting Chip and Papa Dale! In no time they had already lost a bullet!! Chip brought the Wii from home and set it up for us.  Let the games begin!!!!

Sunday Day 11

Today we had a great day playing the Wii together. Ty introduced me to a bunch of games that I've never played before. Turns out he's a great teacher!! The doctors are noticing a difference in the way Ty looks and acts. They feel like things are turning around and Ty is well on his way to getting better. We are blessed.

Ty wouldn't touch the hospital food today so I decided to go out and get us both a sub. I got a shower, fixed my hair, put lotion on to hydrate my skin and to make me smell good. 

I felt like a million bucks!

I had a pep in my step and I was ready to conquer the world again.

I got in the van and exited the parking deck and started my exploration of Chapel Hill for a SubWay. Somewhere from left field  a wave of sadness and grief suddenly consumed my spirit. I felt vulnerable and not ready for the not so bright days our future has to offer. I began to realize that I'm associating sadness and grief with the smell and presence of being in my van. Doesn't that sound crazy? Maybe its from the thoughts and feelings I experience while going back and forth from home to the hospital?? For 2 months the only time I've been in my van is when I'm on the road getting Ty to a doctor's appointment, or driving to the pharmacy to pick up his medicine. My heart pondered if it would be like this in the end. If I will associate certain smells, places and times with Tyler and experience that wave of sadness and grief. 

I tried to snap out of it and I was confused as to where all of this came from. How can I go from being on top of the world for a few hours after months and months of worry and stress, only to come crashing back down on a trip to SubWay. Perhaps it was a product of being alone and by myself, temporarily away from the hospital. I don't know. I'll try to figure all of that out later. Right now its time to get back to Tyler and to enjoy him and his smile.