Day Three at the LCH

I’m starting to get that feeling like, “wait, what day is it?” There is not much of a difference between Friday or Saturday (or Sunday, or Monday, or Tuesday…) except that DJ was off work and able to spend the day with us at the hospital. Things are still just trekkin’ along. I am sure in a couple days I will start to get a little cabin fever. I am going to make it a goal to get out of here a little, but it is hard to leave Colin’s side. Or at least leave the hospital. I have gone down to the cafeteria, and the short break is good. In a way, it’s fun to get to spend so much time with Colin and family that has been visiting.

We really like the nurses and doctors. It has been an interesting couple of days though. They are implementing a computer charting system, and so everybody is running a little slow as they adjust to the change. One nurse said “I’m good at being a nurse, not a computer nerd.” I think that it’s kind of funny. But it is very cool that Colin’s records will be accessible and clearer than in the traditional paper charting method! We are probably good for them to learn on though, as I am extremely laid back and patient, and Colin is content no matter what’s happening. I figured, we aren’t going anywhere, so why should I care if it takes them 10 extra minutes to get all the info in order.
For those of you who want to know more about Colin’s medical status, the samples taken during the broncoscopy are showing the same things as the culture from his mouth taken a week ago. So, we are on the right medication and should not need to change anything there. Basically, as they watch the culture develop they may decide to change the dosage to treat his infection accurately. Not a biggie.

They weighed him today and will continue to weigh him daily to track his growth and make sure his digestion is on track. He was 17lb7oz! That means either the scale is way different than the one in the doctor’s office, or it means he has gained 9 oz in just 5 days… he was 16lb14oz last Monday! That is a HUGE jump for Colin! I’m very proud on his growth. Along with this weight gain is developmental growth. He is so close to crawling and is trying to sit up from laying on his back all on his own. We know that the moment he can do it… life is gonna get a little trickier as we will have to keep our eyes on him all the time! But it is so exciting to watch my little boy learn and grow.

One last thing I want to share is that we spoke with Colin’s pulmonologist, Dr. Ashe today, and he shared with us his enthusiasm towards the latest CF research and developments. He recently attended the annual CF conference, and he said for the first time is 18 or so years, you could feel the excitement as they revealed some positive things that are being tested and studied. It’s wonderful news. Because everything they learn and develop can be passed on to Colin, to improve his life and, hopefully, EXTEND his life. We are truly thankful for our doctors and that we live in a place where we can get TOP NOTCH care so close to home. We know that Colin is in good hands. As his parents, we’ll do everything we can for him. His doctors are knowledgeable and prepared to care for Colin. But the best of all is that Colin’s life is completely in God’s hands.

Hospital - Day Two

Things are still going well around here. This is a great hospital. It is warm, inviting and extremely kid-friendly (honestly, I wish grown-up hospitals were this cool!). Since Colin is not hooked up to monitors or actually “sick”, we are able to move around and do a lot more than last time we were here. There is a play room on the hall (which we have not been to yet) and on the top floor there is a play garden. It is outdoors, open to the air and sun. We went up there today. They send us with a pager like you get at a restaurant, in case they need us back in the room. It was a beautiful day, and it is encouraging to know that we can take a break and go on a walk whenever we want. There is also a department in the hospital called “Child Life.” Basically, they are here to make the stay enjoyable. They provide toys, and if needed, would come stay with Colin while I went to go do something so he would not be alone. (Luckily Colin also has 2 grandmas in town to do the same thing!) Since they know we are here for a long stay, they seem to be going the extra mile to make us comfortable. Yesterday with the big room, today with extra TOYS!

Many of the nurses and therapists recognize us from our last visit. Everyone who remembers him is impressed with how much he has grown in the last two months. And all of them remember how adorable and fun he was to have as a patient! He has a great reputation… for being the happiest and cutest baby ever. I love that. I think he is precious… but it sure is fun to have every person who enters the room mesmerized by my son!

We noticed today that as we walk around the hospital we keep saying “well that will be good when he’s older.” It’s actually really annoying that a statement like that does not seem odd. Really… it’s a little crazy that I can get excited about future hospital visits – EXPECTING that, of course, we WILL probably be back. We have been told that, on average, a person with CF may spend some time in the hospital every couple of years. And this is our second time in two months. I hope that it does not continue to be this often… but we do assume we’ll be back again. And, at least, there are fun things to look forward to next time around and as he grows up.
Tomorrow is Saturday, which means DJ is going to get to come spend the whole day with us. Colin loves spending time with his daddy, and he has not had the chance to play with him all week! So… we hope that tomorrow is going to be another good day for The Fishes.

Hospital - Day One

Hello, family and friends. This is Rebecca. DJ is letting me interrupt his blog in order to give you updates while we are yet again in the hospital.

For those unaware of this planned hospital visit, allow me to elaborate. About a week ago Colin’s cough worsened. The medication we had been on to treat the pseudomonas (a common CF infection) was not clearing it completely. His pulmonologist decided to do a broncoscopy, which basically cleans the mucus out of his lungs, and then also administer the antibiotics for the infection through an IV. Because he is so small, they did not want to send us home to do the IV. So… we will remain in the hospital for the entire 2 weeks to receive the medication.

The broncoscopy was this morning. Colin is the MOST amazing kid ever. Everything went great. They completed that procedure along with placing a central line in his arm. (disclaimer: I understand about 50-75% of what the doctors and nurses tell me, so I may say medical things wrong here. Forgive me!) Once he was moved into recovery he could finally have a bottle (after 15 hrs!) and I could see him again. It didn’t take too long for the anesthesia to wear off and for him to get back to his normal self.

I am feeling much better about this hospital visit than the last time we were here 2 months ago. He is not hooked up to monitors. He is allowed to get out of the bed and play. We are allowed to care for him like we would at home, except the nurses give him all his drugs. Plus, when our nurse found out we would be here for 2 weeks, she moved us from a regular room that overlooked a cement wall into this gigantic room with a great view.

So... it’s the end of day one. Colin is great. He is breathing more clearly and (finally!) sleeping soundly. DJ and I appreciate all your prayers. We have a long two weeks ahead of us.

I will probably post periodic updates here instead of sending personal (or mass) emails. So if you want to know what’s happening with the fishes… you know where to find us!

sippy cup

For the past couple of months we have tried multiple times to get Colin to understand the mechanics of the sippy cup. We were just using the normal ones you find at Target that are colorful with a little nozzle on the top and handles on the side. We tried it when he was hungry, when he wasn't hungry (and calmer), and every stage in between. We would give it to him just to play with and get used to and also put a little formula or juice in it to tempt him to put the little nozzle up to his mouth. No such luck.

Our latest attempt was using the Avent attachment for his normal bottle that provides handles and the "feel" for using a sippy cup. Still, eventhough he might grab the handles, he wasn't understanding that we wanted him to raise it to his mouth, tip it up, and let the sweet nectar flow onto his tongue and down his throat.

Despite how it might sound, we weren't desperately trying to get him to use a sippy cup. Really it was just a fun idea that we were hoping he would get the hang of. Just like every step has been, though, we knew one day a light would flick on in his brain and he would know exactly what to do, and do it. Today was that day.

I was drinking some good, old fashioned sweet tea from a glass and Rebecca was sitting next to me with Colin in her lap. As soon as he saw me raise my glass from the table all he wanted was to grab it and "play" with it himself. I let him grasp the rim and the side for a second, then we got an idea. I assembled a small Avent bottle with the attachment and brought it to him (empty). Immediately he stuck the nipple in his mouth, knowing exactly what to do. Being dinner time, we went ahead and prepared his formula, starting with two ounces in this bottle. He downed it in no time with only a little tip at the bottom from Rebecca. As he finished we refilled it until he drank all 10 ounces!

 

We were so proud of him, and it even got us to thinking about what else is going to be changing as he continues to grow up. All we've known in his life thus far is that we pretty much do everything for him. We are exhausted much of the time and have no idea how parents have multiple babies at a time -- or especially how single moms/dads make it. Then we realized, just like now we will not be holding his bottle for him as he drinks, there will be a day when he can use a spoon and fork (or even a spork) to feed himself real food. Eventually he will be crawling and walking himself without our assistance; he'll take his own baths, brush his own teeth, put on his own clothes, clean his own room, and on and on. Of course, for a while we will still be observing most of these things, but not actually DOing them for him will be such a load off that I can't even imagine.

At the same time, there will be a day when he doesn't need us as much anymore, and a day when he even moves away and starts a family of his own. For now that seems like in the distant future, but I know those days will come before we know. And they WILL come. What we can do now is prepare and shape Colin so that he will have the toolbox he needs for facing this world outside of the protection of Mom and Dad. We love him so much and so excited to continue to watch him grow up into an incredible man.

 

much delayed update

It has been a little over a month since Colin was diagnosed with Cystic Fibrosis. In that time we have received an outpouring of love and prayers from so many of you and we cannot help but feel the hand of God moving in our lives. First and foremost we have asked you to pray that God would give us strength, and He has provided all the strength we need. Not to say that the past month has been easy, nor that the next many years as Colin's parents will always be easy either, but we have a determined trust that the Lord will always provide us with the extra courage, the extra patience, the extra endurance we need to face CF and to face this life he has blessed us with.

Thank you all so very much for everything you have done. Both in thought, prayer and action. We cannot express how much you all mean to us and are grateful to call you all "family."

As for Colin, he is doing extremely well. At his seven month well child exam he weighed in at approx. 14 lb. 12 oz. and a week later at his pulmonologist (CF Dr.) appt. he had gained another half pound or so. In a little over a month's time, that means he gained almost 3 lb. when previously he had been gaining about a pound a month, and not even that recently. His CF Dr. noticed significant improvement in how well the air was moving through his lungs and suggested we could reduce the three breathing treatments we were doing per day down to two for two weeks, and then down to just one. They did test him again for Pseudomonas, which is a CF specific virus, and it is still present in his system, but not causing any illness. In order to knock it out of his system he is on an antibiotic called Gentomicin.

Our life is definitely different than it was a month and a half ago, but I think we are getting adjusted to it all. Below I have sketched out what a normal day looks like for us lately. Bear in mind that this could easily change with every passing week.

Rebecca's sister, Sarah Branigan, has also started an incredible "event" through the popular social networking site, Facebook. Through the event, "65 Roses for Colin," Friends, family and strangers are able to create a rose (any way they choose) in honor of Colin and send it to him. We have received many more than 65 and have heard that there are more on the way. Additionally, Sarah and Rebecca have put together a website to permanently showcase the roses that have been sent in, as well as provide information about Colin, Cystic Fibrosis, CFF.org, as well as how one can get involved in a local or national campaign. Please check out www.colins65roses.org whenever you get the chance!

A day in the life of the Fishes:

wake up

colin's am breathing treatment (xoponex & pulmocort, then gentomicin)

shower/get dressed

give colin vitamins (once a day)

give colin zantac

give colin enzymes (every feeding)

feed colin

chest physical therapy (pt) - somewhere in there

take colin to nanna's

work

pick up colin from nanna's

get home

give colin zantac

give colin enzymes

feed colin

bath

chest pt

bedtime story

colin's pm breathing treatment

colin to bed

Of course, this list is oversimplified. However, the best days do seem to be the ones that are the most regimented. We find that Saturdays are the worst at trying to keep his schedule, especially with naps and the like, but he toughs it through, and he loves spending all day with daddy (and mommy).

Also, check out the newest pictures of Colin on Picasa via the link to the left!

seven months old...

As I'm sure you all understand, time is no longer of the essense, if you will. Or really, it is. The things that before always HAD to be done, really aren't quite as necessary in our lives. What is of the essence, though, is Colin. So much so that Rebecca has now crafted a daily schedule for us to use so we don't forget a nebulizer treatment, or one of the many new steps in feeding him, or a session of chest pt (gently thumping on this back and chest). So many things involving Colin and taking care of him are more "of the essence" now than they ever were in our eyes before. It is crazy how adjusting your life because you absolutely have to can give you a glimpse into how selfish you really are as a person. And slowly but surely, through this process, we are stripping down layer upon layer of selfish pride to provide completely selfless care for our son.

Sitting in his room, by his crib, between 9 and 10 each night, holding a breathing mask up to his face so he can take in the different drugs pumping through the nebulizer, there are moments that I look at him and I can think of no where else I would rather be, and yet in the same moment, I don't want to be there at all. I want to be downstairs watching tv, or lying in bed next to my wife. I don't want to have to play "doctor" day in and day out for my son. I think ahead to our future and I don't want to spend a week or more each year by my son's hospital bed because his breathing had become too bad for us to care for him in our home. These are my selfish desires. I don't want them so Colin doesn't have to go through it all, I want them because I don't want to go through it all.

And in that same moment, I am back to not wanting to leave Colin's side. To always wanting to protect him and provide for him, and watch him grow into a stellar young man and sweep some lovely, unsuspecting young girl off her feet. I want to instill in him a desire to dream big and love intensely and live adventurously. These are all things that I wanted since the moment we found out Rebecca was pregnant. I want to love him unconditionally and I pray that through those devastating moments when the neurons in my brain are colliding with the reality and the gravity of Colin's situation, that God would provide both Rebecca and myself with the strength and the courage to rise above the "me" culture in which we live, which infects us both, and see to it that our actions towards Colin are completely and utterly for him, 100% organic and pure.

So as for the essence of time, the blog really hasn't been gaining any ground on the list. It is evenings like tonight, when Colin goes down for bed smoothly (which is actually happening much more often lately), that I am able to squeeze in some time for things like this. And so instead of a real update with all the details of our life over the past few weeks, here is an even truer update into our hearts and our desires. To all of you, thank you so much for all you have done over the past several weeks. Please know, even if we haven't had a chance to thank you personally, that you are all greatly appreciated. I also know that many of you have sent emails and written letters and the like, and while we haven't been able to respond to every one just yet, please know we have received them and we thank you so much for your offerings of support and prayer. We humbly accept them all.

Soon I will have to add more pictures to Picasa of our incredible growing boy. Thanks to the enzymes he is now taking, he is bulking up quite nicely. I will be sure to let you know when I do. For now, adios.

sixty five roses

Colin, Rebecca and I arrived home from Levine Children's Hospital on Monday afternoon and got started right away on laying our schedule over the next few days: full of Albuterol treatments, medicine giving and feeding schedules with new precautions to counteract Colin's reflux. It was a lot, but we were ready.

After twenty-four hours at home, Colin was back to his pediatrician for a follow-up appointment, where the doctor recommended he be tested for cytic fibrosis. Time out.

Now, at the hospital, the attending doctor had mentioned CF, as we now know it, but only as something they would have tested for if he had been sick for a month and still not getting any better. This had only been two weeks, a long time, but still not so long as to still have some lingering congestion, in a baby nonetheless. But after looking at Colin's growth chart and all of the respiratory issues going on with the cold and pneumonia, she said it couldn't hurt. Gulp.

This morning Colin was back at Levine for the test and around 1:30 Rebecca called me with the results. Colin was positive for cystic fibrosis, or the moniker that it has come to have: sixty five roses. Big Gulp.

So what does this mean? What is cystic fibrosis exactly? Isn't it that crippling joint disease? 

According to the Cystic Fibrosis Foundation:

"Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

- clogs the lungs and leads to life-threatening lung infections; and

- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."

Scary? Yes. Crazy? Yes. Will we make it through? Yes. Friday we will meet with a pulmonologist who will go over a ton of information about the disease and give us an opportunity to ask any questions we might have. From there we will schedule the second test and at the same appointment go ahead and test his body to see what type of CF he does in fact have. The information learned from that test will help us determine what combination of treatments Colin will need.

Needless to say, this week has been insane, but we are up for the challenge that is before us. Of course, a part of us wants to be able to raise our son without having to give him special treatments, or give him medicines with every meal, or take extra precautions when he is going to be exposed to people who are sick, but the reality is that our son has cystic fibrosis and we are ready to do what we need to do.

Tonight, when I came into the house from work, I looked at Colin and he smiled back and gave a little laugh, and all I could about was, there's my son, the same as he's always been. The reality is, that is true. Nothing has changed about Colin, only the information, the knowledge, we have.

I love him so much and while I know there are challenges before us, I am more excited than ever to see the man that my son will become.

If I may make one request: please pray. For Colin, for our own abilities, for our emotions, and for our sanity through all of this. Thank you.