I am the mom of a 10 year old son with Cystic Fibrosis (Ty) and an 11 year old son without CF (Bran). This is my journey as I balance Ty's needs while giving Bran the love and attention he deserves.

Tuesday, July 27, 2010

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.

Thursday, July 22, 2010

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.

Monday, July 19, 2010

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. 

Thursday, July 15, 2010

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!!

Monday, July 12, 2010

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
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!!!

Sunday, July 11, 2010

Hospital Days 1-4

Thursday (Day 1)
We were admitted after our clinic visit. We went up on Vancomycin from 440mg to 600mg. So far the red man syndrome has not come back and we're not even doing benadryl! Thumbs up!  We've added intravenous tobramycin and he is on oxygen while he sleeps.

Friday (Day 2)
Today we had Ty's hearing tested. He's never been tested so we needed to get a baseline on him, especially since he is on both the intravenous and inhaled tobramycin. The test came back normal, his hearing is fine! I think it only took about 15 minutes and we received the results immediately. Ty's oxygen levels kept dropping so he remained on O2 until lunchtime. After that he maintained levels of 96/97 on his own. Today Ty had to have blood draws because of the change in dosage levels for the vancomycin and the addition of the intravenous tobramycin.

Saturday (Day 3)
Tyler was quiet all day today. He hardly spoke a word to anyone. Bran, Me-maw and Papa came to visit so Bran and Ty played on the laptops all day. It was pretty odd to not hear Ty talk and shocking not to see that infamous attitude of his for an entire day. ☺ Oxygen levels stayed low all day so we kept the O2 running. We had another blood draw to monitor kidney levels.

Sunday (Day 4)
This morning we were awoken to the nurse freaking out over Ty's PICC line. Undoubtedly he had completely wrapped himself up in the cords and had pulled his PICC line out a little bit. I think she drenched and scrubbed his arm in alcohol for fear of infection. I got kinda tickled at her because she panicked but it was comforting to see that she cared and took extra precautions to try and 'save' the PICC line. The doctor was paged and an x-ray was done to see where the line was. The line is no longer "central" but it is still okay to use to administer the IVs. The IV dosages remain constant, however the concentration has been changed to accomodate the misplaced line.  Tomorrow a team will come in and will either push the line back up or will thread a new line inside the existing line.  I had no clue they could do that so it will be interesting to see! O2 levels are still low so we're still wearing the O2 nose piece. 

Today the doctor asked if Tyler ever talked to me about his CF, how it makes him feel, his fears, if anything worries or bothers him, etc.  I've asked Ty about his feelings but he didn't voice much. Our conversations usually come up when I prepare him for a scheduled procedure or when we need to talk about compliance with his medicine and treatments. The doctor is going to have one of the psychologists come and talk to him to make sure there are no unmet needs.

Another blood draw a few minutes ago. When the lady stuck him I could tell she wasn't good at what she does. She stuck him and went WAY into the vein. I could see the tip of the needle trying to stick out of the skin on the other side. She then proceeded to move the needle around in the vein while Tyler cried in pain. She did this 2 times. Her time and opportunity is up. She'll not stick him again. The next one better get it right or this Mama is going to get mean.

Friday, July 9, 2010

Clinic Visit

Our clinic visit was yesterday, we were excited to see how high Ty's PFTs (lung function) were. We were also going to get his PICC line removed since the doctor allowed us to keep it for an extra week. Ty did his lung function test and could only get up to 44%.  He struggled with pushing air out and would start coughing pretty quickly. He turned around and looked at me and said he didn't have any air in his chest and that it was hard to breathe.   That hurt.

From that point until the doctor walked in I knew that we were in big trouble. I could hear the doctor talking about Ty in the hallway, saying he had never seen anyone drop half their lung function in just 1 week. He even went and talked to the PFT guy to make sure he had done the test right. Ty was given 4 puffs of Albuterol and the test was repeated. His 1st blow was his best @ 51% and he went downhill from there.

We were immediately admitted into the hospital and a few things were added to our treatment schedule. We're now doing oxygen, prednisone and tobramycin.

Confession time:  I've always seen our CFers with oxygen on but let me tell ya, it takes on a whole new meaning when you see your own son with it. It hurts, it ties my stomach in knots and it gives me a much deeper appreciation for fellow CF families and patients.

Overnight Ty's oxygen level dipped to 88 and 89. With the oxygen he's back up to 97.

That's all for now.

Wednesday, July 7, 2010

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!

Monday, July 5, 2010

Bran is on TV!

Brandon is on TV! For July 4th we took the boys to The Battle at Guilford Courthouse in Greensboro, NC. They soaked it all in and to our surprise loved it much more than we anticipated. We also took along my nephew Christian. He and my fiancee "Chip" are also in the video.

Our children are tomorrow's leaders. If you haven't already, educate them about our history. Give them the tools to restore this great nation!

Sunday, July 4, 2010

Fighting the Meds

And so it begins...

Tyler has made it perfectly clear to me that there are going to be times when he fights taking his medicine and he fights his treatments. I have found medicine on the floor, hidden in pockets, and even sitting out in full view on the kitchen table. We've moved beyond the normal not wanting to do his treatments and have stepped into a new phase of hiding meds and filling up nebulizer cups, only to dump them out when he gets into his room because he doesn't want to do his treatments.

I was warned this would happen. Last year's CF Family Day had an array of parents telling jaw-dropping stories of their teens vehemently refusing to do their treatments, having them say with great anger and attitude that "I'll DIE before I ever let them cut me open and put new lungs in me, STOP talking about it!". One mom said she and her daughter fought constantly over treatments. She would tell the daughter to do them and her daughter would fly into a rage over them never getting off her back, not trusting her and never giving her a chance. The mom said a simple, "Do your medicine" would turn into an all out scream fest. She said she would back off of her daughter and give her the opportunity to take responsibility for her medicine and then the daughter would again NOT do her medicine. A few thoughts that came to mind were:

I'd whoop her tale!
Not my child! He better pray he never does that!
I would ground him! Let's see how long he can go without his video games, cell phone or iPod.
The parents must have never disciplined that child and now look at them having to deal with a monster.
I wouldn't let my child talk to me like that.

Isn't it funny how we jump to conclusions and make judgments when we've never walked in the other person's shoes?? Isn't it heartbreaking when you think you're exempt from a particular problem and then one day that problem happens to you?

Tyler's recent behavior has made me realize that there are more deep-seated issues to this problem than first thought. The easy way out is to assume that Tyler is just being lazy. The effortless excuse is that he doesn't want to stop playing his video game long enough to do his treatments. While these may be true at times, it is so vitally important that we dig deeper and objectively ask ourselves, "WHY is he REALLY refusing?". Could there be another reason? Is it time to help Tyler soul-search and identify his feelings?

Tyler and I have had "us" time where we casually talk about how he feels. It is important that he is comfortable talking to me about his feelings and it is important that I give him the space and opportunity to express those feelings without being judged or ridiculed. Sometimes when I ask Tyler a question he gets really quiet and I can tell that (1) he feels embarrassed to admit the answer or (2) he hasn't thought about it and needs time to gather his thoughts.

It's okay to give our kids time to think!!!

The greatest resource that I have as a CF mom are fellow CFers! If I ever have a doubt or need a heads-up on what's to come, all I have to do is send an e-mail or type a message on Facebook. Tyler not taking his meds has soared to the top of my 'concern' list. A fellow CFer had this to say about it:

I hid stuff ALL THE TIME! Unless the pills make Tyler sick, you can pretty much assume that he is in a phase where he is tired of taking meds and is testing his limits. Can you blame him? I'm 31 and I get tired of doing my stuff everyday. It's a drag. :-)

The best thing to do is to ask him (in a respectful voice, not just a mom voice ;-) why he is doing that and let him answer without interruption. Once he has finished it's really important to validate his feelings for a moment. Then explain to him why it's important to take his meds. It may not totally fix the problem, but it will help you find out the best way to deal with the situation. Contacting your pediatric CF social worker is your best bet because they will have tricks and tips to wade through this common struggle.
Wow! Can you hear that sigh of relief? Maybe I'm doing something right after all!! ☺ Isn't it nice to know that your child isn't the ONLY one to go through this?

In closing I will leave you with 3 guys (CFers) who have held my hand and walked me through issues that have really concerned me with Tyler:  Ronnie at RunSickBoyRun, Josh at Joshland and Kevin in my hometown. I can't thank these guys enough. You've always been there and have gone above and beyond the call of a concerned CF mom. You're the best! I love you!

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