Wednesday, November 26, 2008

We are thankful...

It has been a full week since I watched the nurses take out Colin's pick line, packed up our bags, said good bye and headed home from the hospital. I am not too surprised that it has taken me this long to find the time to write about the end of our stay and update you all on Colin's status.

We have spent the last week settling back into our home routine, catching up with stuff at home and work, and continuing to care for Colin as he needs us to. I am proud to announce that Colin is doing amazingly well. The doctor told us that he would be a different kid afterwards, and we didn't really know what that meant. We figured, Colin is a pretty happy, content kid anyway... so how much better could he become? We expected him to improve medically, but we didn't expect anything more. But it's true. He has grown up so much over the last few weeks. It really is as if he has more strength and energy to play and interact with his surroundings. Oh... and he is getting LOUD!

One doctor suggested that because we removed so much mucus from his lungs, that
now his nutrients can go to his growth instead of going to "fight" the infection and mucus buildup. Colin now weights 18lb 12oz and is 29" long! That is 25th percentile for his weight and 75th percentile for height! Before he was diagnosed with CF, he was in the less than 3rd percentile for his weight. What a drastic improvement!!!

On a different note, I want to say that we are so thankful for each of you. If you are taking the time to read this blog and stay updated on our lives, we love you. If you ever say a prayer for Colin, we appreciate you. If you have helped us out in any way... from bringing us dinner to calling to say hello... we are so grateful to have you in our lives.

One of the things Colin has taught me is that life is truly precious. We don't know how long we have or what the next day is going to bring us. So it is important to make the most of every moment we have. To cherish the time we get to spend with family and friends. I will continue to do the things I need to do to help Colin live a fulfilling life, and I hope and pray every single day that he grows up to be an amazing man and lives a long and wonderful life. While it's not always fun or easy to give him the care that he needs, I know that there is nothing more important that enjoying every moment I have with my beautiful baby boy, and doing everything I can to help him thrive.

I wish all of you a wonderful Thanksgiving! I hope you are spending it with people you love.

Oh, and I am going to give DJ back the reigns to this blog. It has been a pleasure writing for you.


Saturday, November 15, 2008

The Technical Stuff.

OK so I just reread the last few posts and realized some of you may be looking for an actual update on Colin's medical status, and not just another reminder that he is adorable.

On Wednesday morning we had another chest x-ray. The doctor said he looks much more clear. There are still a couple patches of mucus in his lungs, but if we focus the chest PT in those areas and continue with these meds, we should be able to knock it out. He seems to be responding to the meds perfectly. 

His breathing has drastically improved. Except for a couple nights when the respiratory therapists were running late, I have not heard a wheeze or rattle in his chest at all.... the silence is incredibly strange. Colin has been a hard breather since birth... so it's awesome to hear such an immediate difference.

The 2nd weekend.

Still Rebecca here. We're over half way there! I think both Colin and I are a little tired of the hospital. At least I can get out now and then... he is stuck! 

In the last few days we have had nurses "fighting" to be Colin's nurse... one nurse say "I've heard about colin but hadn't seen him yet"... more people talk about how cute he is and how happy he always seems... and one tell us that he is without a doubt the most popular kid on the floor. How did we get such an awesome little boy as a son? I am totally amazed with how incredible he is.  Seriously... colin has been at the hospital for 10 days now, and STILL have such a happy disposition... you'd never know there was anything wrong with him. 

Last night DJ had his first overnighter at the LCH. And tonight is my first night away from Colin since the first day he was born and in the NICU. For almost nine months, I have not gone a single night without him in the other room or right by my side (and technically 18 months if you count being pregnant).  It was hard to leave the hospital tonight, but I know it is good for me (I am going to sleep in a real bed!... and I am trusting Colin's daddy to be in charge!). I pray it is a good night for both of my boys. 

I just want to say a quick thank you to everyone who has prayed for us, called, and visited us during this time. We feel extremely blessed to have such amazing friends and family.

Tuesday, November 11, 2008

So Much For Schedules

Today was an interesting day for Colin. Every time he fell asleep for a nap, someone would come into the room (often loudly) and wake him up. So each time I would lay him down, he was so restless- fighting sleep. Even now, he is down for the night but I keep hearing him stir. And any moment the nurse is going to come in to hook up his IV, and I am sure he will wake up again. Poor little guy. The doctor understood that it's not easy maintaining our normal schedule in the hospital, but he's trying to help! They weigh him every day... and I just found out they were doing it at 4:00 in the morning. I thought it was ridiculous, but they said that's just what they do for kids under 1yr old. Thankfully, our doctor told them NOT to do it until after 7:00am! Maybe Colin will actually sleep all night tonight. We'll see...

He's still doing fine. His breathing is pretty good, his appetite is big, and he's growing every day. Colin did have something exciting happen today. He is starting to babble more, and today he has discovered the "da" sound. It's adorable. He now speaks continuously "dadadadada". One day he'll know what he's saying, but for now, DJ is still pretty excited to hear Colin call for him!

I finally left the hospital today. I didn't really feel like I wanted to or needed to, but everyone wanted me to get out for a bit... so I left. I am sure it's good for me, but I think having a nice view of the world from our room helps me not feel cramped. I get to see the outside world every day through our window. And many friends and family have come to visit. All those things are helping to make our stay here much more pleasant. Nonetheless, I will continue to leave the hospital a few hours as I am able because I know it's suppose to be the healthy thing to do. But all I really care about is being here with my little boy.

Tomorrow we have a chest x-ray in the morning. I think the doctor expects it to look clearer than last week. I'll update once we know a little more! Hopefully Tuesday will be a better day for baby Colin!

Monday, November 10, 2008

A New Week

Monday's over. I didn't even write on Sunday. Not because I didn't have a chance to, but nothing new really happened. We're  just here. Each day is pretty much the same. The nurses come in. They hook Colin up to the IV pump, give him meds, do some breathing treatments, he eats, he sleeps... and then in a few hours we do it again. It's really not so bad. Colin plays, I try to get some work done, and we make it through the day... putting us one day closer to going home again. 

The doctor still thinks he is going great. We will be getting another chest X-ray on Wednesday and some lab work on Thursday. They will just keep monitoring his progress and enjoying getting to see him every day. One of the nurses Colin had a couple days ago passed me in the hall and asked me how her boyfriend was doing. Today some of the nursing students from UNCC and CPCC were here, so Colin flirted and they played with him a little. The students ask some good questions about CF, and I am glad to be able to share our story with them. They seem interested in how it is diagnosed and what to look for and stuff like that. I think it's great they are learning about CF, even if it's through us.

I don't know if there will be anything noteworthy in the next couple days, but I'll be sure to at least post to say we're still here and doing fine. Until then, goodbye from the LCH!

Saturday, November 8, 2008

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.

Friday, November 7, 2008

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!