Feeding Tube Awareness Week-Our Story

Today is the kick-off to Feeding Tube Awareness week. Today's topic is tell your story. to make a LONG story short I'm only going to talk about her tube related issues. If you want to know about Caelyn's other struggles, feel free to browse around on the blog. Here goes:

Caelyn had trouble eating something since birth. I knew something was wrong, but her doctors kept brushing me off. We moved back home where I knew that there was doctors whom I could trust. Right away her doctor sent us to ENT who looked down her nose and throat with a scope then sent us downstairs for a swallow study. They told afterwards to wait in the waiting room and the doctor would come talk to us. I could feel the tension in the air. I knew something was wrong. About an hour later, the doctor comes to talk to us. He says that they have to admit Caelyn right away. He said that she needed something called an NG tube. This is a tube that goes down the nose, through the esophagus and into the stomach. The doctor that she was silently aspirating everything that she was eating. This was so scary for us! Caelyn was 6 months old at this point and to think that she had been silently aspirating for that long!! She could have been seriously ill...or worse. We were in the hospital for about a week while Caelyn had some other testing done and we had to take classes to learn how to use the tube and replace it.

About 2 weeks later, Caelyn kept getting sicker and sicker. She just was breathing right and there was times she stopped breathing all together! We took her back to the pediatrician who right away sent us back to the hospital. We spent about 5 months in the PICU.  She ended up getting a trach and a G-tube. A G-tube just directly goes into the stomach. I was so conflicted about this decision because Caelyn had so many struggles with it from the beginning. She developed some pressure ulcers which later developed into MRSA. Her tube leaked from the holes and sores and she was able to use it for a little over two weeks. She was in a lot of pain and it was hard to for to see her like that. I was so torn inside, wondering if I had made the right decision.

Caelyn got her G-tube for dysphagia (trouble swallowing), failure to thrive, and malnutrition. It was a long scary road, but I wouldn't have it any other way. Caelyn's tube is a life saver and allows her to be here with us today. This week we are trying to spread awareness of feeding tubes. Kids with feeding tubes do not need pity.  Some kids eat with a fork and spoon, mine eats with a tube and syringe :)

Whew....It's been awhile.

Wow! It has been awhile since I've been able to post on here! After Caelyn's surgery in March we went through quite a long set-back period. She wouldn't eat or drink anything....she wouldn't even swallow her own saliva! She was choking all the time, she wasn't able to sleep hardly at all. It was terrible! Boy,  am I glad that we stuck it out! It took about 3 long weeks for all the swelling to go down and once she was back to "normal" everything was SO much better for her!! She was eating a million times better (she still has an aversion to drinking that we are constantly working on), sleeping better and most importantly, she was breathing better.

We started to notice that she had more energy during the day because she wasn't working so hard to breathe. That's when the trouble started!! I think it would be safe to say that Caelyn has definitely reached her terrible twos. It is amazing to watch her grow and learn everyday and see that even though she doesn't have the skills of a "normal" two year she sure does act like one! She has a very spunky personality. She is growing more and more stubborn and obstinate every day, but she is so much fun I wouldn't trade it for the world!!

Her second birthday was so much fun! She was not interested in her presents at all. I had to open them all for her. When it came to birthday cake time, she also was not interested. I got her to eat a little bit of frosting, but she mostly squished it and rubbed it in her hair.

Caelyn's favorite thing to do now-a-days is go for a walk. She loves to go to the park and feed the ducks (mostly, I think because her nurses always stop and get her ice cream on the way home).

Sometimes she likes to go to the splash park and play in the water. However, as you can see in the picture, sometimes due to her sensory issues she hates it and screams bloody murder the entire time we're there!

And...since it's been awhile since you've seen any pictures of Caelyn...here is one of her playing with the balls and toys with her OT at therapy

And here is one of Caelyn playing with the light box at therapy. It has a fish on it. The only two things that we have found so far that motivate Caelyn are fish and bubbles :)

And lastly, a fun little video of little miss punkin head. She was in her stander, laughing and playing her piano...until I got my phone out and tried to record her. Then her terrible twos came out and she mostly yelled at me, did some smirking, and at the end finally played a little bit of piano. Sorry its sideways. And yes, if you listen closely in the background you can hear Caelyn's baby sister born 4-27-12. But, thats a different post for a different time. Enjoy :)

Tonsils and Adenoids, Oh My!

Wow! It has been awhile since I have been able to sit down and write a blog post. It has been a hectic past couple of months, and even know as I begin to breathe easier going back into our old routine I know that it's only a matter of time before things get shaken up again.

Caelyn has been doing fairly well this past winter. I was really nervous since this is our first respiratory season without the trach, but Caelyn has done surprisingly well. She had a few small upper respiratory infections over the winter, but nothing too serious.

In January, Caelyn finally had her first appointment with craniofacial clinic. Anyone who has been in this situation can tell you how overwhelming and scary this can be. This is one appointment where Caelyn met with about 10 of her specialists one at a time to get their recommendations. We were there for 3 hours. Boy, was she tired when we got done! This is where we first learned that her doctors were recommending mandibular distraction surgery (more on this later).

It was decided that Caelyn needed to have her tonsils and adenoids removed. No big deal....or so I had thought. Turns out that now that Caelyn does not have her trach to fall back on for a secure airway she has a hard time waking up from anesthesia and maintaining her airway. Caelyn has set to have her tonsils out on the morning of Feb. 3, 2012. We arrived at the hospital in the morning and got her all registered. Then we were off to wait in the surgical waiting room. I was so nervous for her. Finally they called us back and we got Caelyn weighed and into her hospital gown. Turns out, surgery was running behind. They didn't even take her back for surgery until 3 hours after her surgery was supposed to start! Poor thing, I'm sure she was tired, cranky, and hungry...as we all were. You couldn't tell though, she kept a smile on her face and occupied her time playing peek a boo with her blankie.

We waited for what seemed like forever when we were finally told that Caelyn was out of surgery and in the PICU and that we could go see her. They had to bring her out of surgery with an endotracheal tube (breathing tube down her throat) because she was unable to maintain her own airway due to all the swelling.

They had to keep her arms in restraints and keep her heavily sedated because Caelyn is a bit of a wild woman when she wakes up from anesthesia. She kicks and bucks and gets hysterical. They had her on a morphine and versed drip and had to give her an additional 5 doses of medication just to keep her from waking up and trying to pull the tube out. It was hard to watch her go through that.

The next day in the PICU, they tried to remove the breathing tube. Caelyn did really well without when she was relaxed or sleeping, but when she got upset her airway would clamp closed. They ended up having to put a tube down her nose just far enough to stint the airway open through the swelling so that she could breathe. They took her off her sedation medication so that she could wake up and breathe better, but they were unable to take the restrains off because she keep trying to pull the tube out of her nose.

Finally, the next they were able to take the tube out of her nose and Caelyn did beautifully. We were able to move up onto the regular hospital floor and ended up going home the next morning.

When we got home we continued to struggle. The first two weeks, Caelyn refused to swallow anything. She would not eat and she would not even swallow her saliva. It got to be really bad. She would just let it all drool out and she was choking on it multiple times a day. Recovery for Caelyn was long and rough, but thankfully now she is better and her eating and sleeping have both improved tremendously.

If your kiddos had to have their tonsils and/or adenoids removed what were your experiences with it? I want to hear your stories :)

We Finally Did It!!

Hello everyone! Sorry it took so long for me to get this blog post up. We have been so crazy busy lately! The week before Caelyn's surgery we went to the Labor Day parade and Caelyn had so much fun! Her favorites are the marching bands, police cars, and fire trucks. She loves her loud noises!! And she even got a sucker or two!

Now onto the reason why your here: surgery. We got to Rainbow around  3pm on that Sunday and they did not have a room available for us so we had to occupy Caelyn for about 20 minutes until we could get a room. It was kind of fun checking into the floor because all the nurses remembered her and were amazed at how great Caelyn had been doing! After Caelyn went to sleep that night Caelyn got hooked up to all of her monitors for the evening for her testing. When her nurse came in to check on her in the middle of the night, she informed me that Caelyn's surgery was going to be at 10:30am the next morning and  that they would probably be there to get her around 9am.

The next morning, we went out to the car to get some things that we had forgotten and when we got back they were there to get here already! It was only 7am!! We were not ready for them yet! We walked Caelyn down the the pre-op area and stayed there with her while they got her prepped and we talked to her doctors. They were going to do an MRI first and then would do her bronchoscopy and trach removal. Her ENT doctor said that they would do the bronch, cut out the scar tissue and then sew her closed. She would go back to her room and we would go home the following day. Then I talked to the pulmonary doctor who said that her test results from the previous night was kind of iffy so they were not sure if they would remove her trach or not. They did a CO2 study and she said that Caelyn's levels overnight went to 60 (with normal being 35-45). At this point we were very nervous. Of course we wanted Caelyn to get her trach out because it would be so much better for not only her, but all of us! On the other hand, we were really nervous because of the test results. We for sure wanted to do what was best and most safe for Caelyn. All we could do at this point was pray and see what happened when she got out. They told me that Caelyn would also be getting an echo cardiogram because of the high levels of CO2 they wanted to make sure her heart wasn't working too hard. They told me that Caelyn would be in surgery for an hour or two. Now time to wait...

3 hours in and we still had not heard anything. I asked the secretary at the desk and she called back to surgery. She said that Caelyn was with ENT now (which was last on Caelyn's to do list) and that they were just finishing up. Now I'm so nervous I'm shaking. I just want to see my baby. Does she have a trach? Does she not? Another hour goes by and we haven't heard anything again. So once again, I go up to the desk and list the things that Caelyn was supposed to have done and asked her if Caelyn was finished with all that. She calls back and tells me that Caelyn had her MRI and her bronchoscopy, but she did not have an echo cardiogram and that the doctor would explain why. They said  that she would be heading to recovery and they were be calling us soon. By now my mind is racing? Why didn't they do the echo? Maybe the decided to keep her trach in. I'm so nervous I can't sit still and I'm nauseous. Finally after all this time, Caelyn's pulmonary doctor came out to talk to us. She said that the test results they had given her from the night before were wrong. Caelyn's levels stayed between 17-30. Which is awesome. I was so relieved. She also informed us that they did remove Caelyn's trach. I let out a huge sigh of relief. She said they didn't do the echo because the test results were wrong and they were running extremely behind schedule. Then she explained Caelyn's situation to us. She said that they removed Caelyn's trach, but they did not sew the hole closed because the was still a small area above where her trach was that was kind of narrow. They did not want to sew it shut in case there was an emergency and they had to re-trach her. Also, with letting the hole gradually close on its own, it would give Caelyn more time to adjust to breathing on her own through the narrowing. She informed us that Caelyn was recovering in the PICU and that we could go see her.

I just about ran the halls to get to Caelyn! I was so excited and anxious to see her! What I saw when I walked into the room, however, was a very scary site. Caelyn was screaming at the top of her lungs (however she was hoarse so you could barely hear her) and she was kicking so hard she was throwing herself almost a foot off of the bed. She had a nasal trumpet in her nose and she had an oxygen mask on. I had never seen her act like this before!! She was being a wild woman! As I continued watching her, I realized what was going on. She was freaking out! She kept reaching for her trach and it was gone! Poor baby was crying and hyperventilating and everything! She had a really rough time for about 4-5 hours. They did not want to give her anything to relax her because they wanted her to be awake and alert to learn how to breathe on her own. However, after about 5 hours of non-stop screaming and kicking they finally gave her some Morphine. Then she finally settled down. We got to breathe for a little and update the family on Caelyn's situation. Then, Caelyn woke up again. She reached up and grabbed for her trach and off we went again; screaming, hyperventilating, kicking. So she got another dose of Morphine. This time she actually managed to sleep through the night.

The next day we went to the regular floor and ended up being able to go home to the next morning. The next few days were pretty sad. I felt so bad for Caelyn! She would reach for her trach and just cry and cry. It was so heartbreaking! I would imagine it would have to be so hard for her to have something that was a part of her and her comfort taken away.

After coming home for the hospital, recovery has been great! Caelyn was breathing better everyday and is now back to normal. She is back to her giggly little self and we are looking forward to her spending the night with grandpa and grandma sometime soon!

Thank you to everyone for your support through this time! We appreciate all your thoughts and prayers. It means a lot to us!

How To "Manage" Your Special Needs Child and the Importance of a Medical Notebook

First a quick update on Caelyn :)

She has been continuing to do well. She got to try out her stander at Early Intervention this week. She did so good! She did not fuss at all! She was in it about 10 minutes before we took her out. I'm anxious to see what she does in 2 weeks when we go back! I know that when we bring it home she will love being able to be in it and see/play with her big sister.

We went to the movie theater last night and watched Winnie the Pooh. Caelyn had so much fun! She giggled throughout the first 30 minutes and then she fell asleep! Hahaha. We went shopping today and I just had to share this picture. It's too funny! Caelyn's daddy set his wallet down on her lap and looked away for 5 seconds. When he looked back this is what we found:

Looks like someone is learning early!! (Miss Amy, you would be so proud of her reaching and grabbing!!)


I wanted to make a short post on the importance of "managing" your special  needs child. I cannot express the importance of being involved in every aspect of your child's care. You are your child's best advocate. If one doctor will not listen to you or you do not get the answers you were looking for, go to a different one. Go to 50 different ones if you have to. I went through 3 doctors until we could finally find one that was willing to listen to us and start us on the right path. Trust your instincts; you know your child best.

Go to every doctor's appointment possible. Attend all therapy session when you are able. Find out what you can be doing with your child at home to maximize their care. Know what medication your child is on and the dosages. It is also helpful to know which medications your child has been on in the past. Know what past surgeries/procedures your child has had. Know your child's diagnosis and gain as much information about their condition as possible.

As helpful and important as all that is, it will do your child and their doctors no good in an emergency situation. If there was a situation in which an emergency would arrive and you were unable to be with your child, the doctors would be in the dark as to your child and their situation. That is why it is really important to have a medical notebook that stays with your child at all times. Check out this website for really great information on a care notebook, how to create one, what information should be in it, etc.

Please comment on our facebook page here and let is know if this information was helpful to you and if you have any questions! Thanks! See you next Friday :)

Back To The Waiting Game...

Miss Caelyn has been quite busy with cutting teeth her lately. She was cutting 6 teeth at once (4 of which are molars) and now we are down to 3 teeth waiting to come in. She has been a trooper throughout the whole ordeal. She is hardly ever fussy and I have only had to give her Tylenol once. Thank goodness you cut teeth when you are little because it sure looks painful!!

This week Caelyn got to see an old friend. Miss Kristina, her PT from Rainbow. She had been following Caelyn's progress via the Internet but it is definitely something different to be able to visit in person. Thank you Miss Kristina for coming to visit us! It was great to see you!!

Caelyn has been doing great at therapy. She has been doing awesome at sitting up and she is making such great progress with her eating. This week she was given a sour apple sucker to eat at therapy and she devoured it! She loved it so much! She even kinda fussed when we took it away from her. In fact, she liked it so much that she even attempted to hold onto it for a few seconds! That is a big deal for her!!

We spent the past week playing as much as we could before school starts for Caelyn's big sister. We had fun swinging at the park and Caelyn even went shopping with us at Wal-Mart. She is slowly learning to sit in the carts, but she still needs a little assistance.

We got the rest of our pictures back from Amy Cook Photography and they are amazing! Please go "like" her page and tell her that we sent you! You can see the rest of our photos from our session with Amy here on Caelyn's page.

We are once again back in the waiting game. I got a call from the hospital today to inform me that they rescheduled Caelyn's surgery. Her surgery is now on September 12th. We were so excited and now we have to wait 2 more weeks. EEKKK!! The anticipation is killing me!

Don't forget to "Like" us on Facebook, and send your friends! I'm always sharing useful information! See you next Friday!

Awesome news!

Before we left for vacation Caelyn had her appointment with genetics. They basically said what we hear all the time, "We are thinking about Caelyn and thinking about a diagnosis all the time." I came prepared with a list of about 10 possible diagnoses that might apply to Caelyn and they immediately ruled out 8 of the 10. They ran tests for 2 out of the 10. We should have the answers by the end of next week. They also referred her to a developmental pediatrician to get a full developmental assessment. Also, they said that she should apply to the NIH rare undiagnosed diseases program. I checked out the program and they are not accepting applications at this time. We will keep checking and apply when we can. They only take on about 50 cases a year, but we are hoping for the best!

It has been a pretty fun week for Caelyn. We have been on vacation in Oregon, OH visiting family. Caelyn got to do lots of fun things that she doesn't normally get to do. I am also fairly sure that she enjoyed having a week off without having to see any therapists or doctors. *Miss Susie, Miss Jen, and Miss Wendy....if your reading this, I'm SURE Caelyn missed you guys!* In the midst of all the fun, Caelyn did manage to cut a molar, but the poor kiddo is still in the process of cutting 5 teeth. Since she doesn't chew on anything they seem to take forever to come in!

So we have GREAT news! While driving earlier this week I received news from Caelyn's doctors that her surgery date is August 30th! She will be getting her tracheotomy removed on August 30th! We are so beyond excited! This is such a blessing! We can finally breathe a small sigh of relief as this will remove some of the weight of my husband and I's shoulders. We are not only excited for ourselves, but for Caelyn and the whole family. Caelyn will now be able to spend the night with family and spend time with other people along with her sister. She no longer has to have us tag along with her everywhere.

Caelyn had a lot of fun going shopping and getting lots of new clothes for school. She enjoyed all the extra attention she received and liked all the longs trips in the car and riding in  the stroller all day.

Caelyn also got to go swimming. She loved every minute of it! She is such a water baby! I think it is so funny though because she screams throughout her whole shower, but loves the swimming pool and water parks! That is just like Caelyn though, she has her own mind and is very stubborn. Here she is in her new swimsuit.

While we were in the area, we took the time to get together with a good friend of mine, Amy Cook. Our girls are the same age and they loved playing together! She has her own photography business and she took pictures of our girls at the beach. Caelyn was pretty grumpy throughout the entire session because her teeth were really bothering her. She refused to stand in  the water at all, but she loved sitting it and splashing in it. Amy did an amazing job with our pictures! Here is a sneak peek of our pictures, be sure to "Like" Amy Cook Photography and tell her we sent you!