Tuesday, January 3, 2012

New Year, New NEWS!

Happy 2012!

After almost a year away from the blogging world, I am ready to post again.  I found blogging (and reading them) was taking so much precious time away from the things most important to me!  We were also struggling to make a very important decision and it took a very long time, many tears, and many prayers to be where we are today.  Comfortable and at peace with our decision.  What decision you ask?  I will let the picture do the talking:

(photo credit Melissa Rae Photography)
Cayden is going to be a big brother!

Our little bean is due to arrive sometime around July 16, 2012 and we are beyond thrilled! I am so excited for everything this new year will bring our little family!

Sunday, March 6, 2011

Cayden eats!

Lately I have been trying extra hard to get Cayden to eat but also still healthy and homemade.  Because he has been sick, it has been a challenge to get him to eat at all.  I have been trying lots of new recipes that we all can eat, but modifying Cayden's portion to add all the extra calories, fat, and salt that he needs.  I came across a great food blog that referred to me by my sister: weelicious.com   It is filled with lots of kid and adult friendly ideas to get your kids eating.   So far, everything I have tried from it is super easy and delicious too!  

Cayden loves the Nutella Pancakes with Raspberry sauce and the Spinach pesto.  We tried the chili, but he didn't like that so much, but I loved it!  

{Spinach and Pistachio Pesto}

{Nutella Pancakes with Raspberry Sauce}

Saturday, March 5, 2011

where we've been

Cayden has been sick.  Sick since the end of january.  It started as a cold with congestion and runny nose and stayed like that until about 2 weeks ago when it turned into a nasty cough.  That progressed into a lethargic little boy that would eat, drink, or play.   I called the respirologist on call and they put him on Bactrim.  5 days later, still sick, worse even.   Called again and we were advised to go to the ER in town and after a long wait, antibiotics were switched to cefprozil.  Two days later, cough seemed to be gone and Cayden was relatively happy when I left for work. Upon arrival home, found out that Cayders had a fever and was vomitting.  The lethargy was back and the fever never left.  So, last wednesday we went into children's and found out Cayden has lost a little weight and his o2 sats were between 80-85 which is not great.  He was given steroids orally and with ventolin and rechecked and the sats were about the same.  Cayden also had an xray and it didn't show pneumonia (thankfully) and it was decided that he should be admitted.  I practically begged them not to, and his doctor finally agreed with me that it was okay to send us home as long as I promised to drive like heck to the city if something happened. 

Soooo, our house has been sleepless and teething hasn't helped the sleep situation either....Cayden  has sprouted 4! new teeth in the past 2 weeks.  Cayden only wants to sleep in my bed and wakes every 1/2 hour.  I am exhausted.

I am however, working on Cayden's Great Strides 2011 video and will register the team soon.  Yay!

Monday, January 24, 2011

Bronchoscopy and Endoscopy

Wow! It's been a month since I have been on here!  I just can't seem to find the time (or ambition) to write here.  Sometimes it's too hard to write here or read all of your blogs.  Its much easier not visiting the reality that this disease really is. 

Cayden had his bronchoscopy  and endoscopy on  January 5th.  The results of his cultures were great--no growth!  We are so happy with this news.  They said his lungs looked pretty good, some mucous there but not super thick and not in large amounts--more good news.  The only thing that they found, was that Cayden seems to be missing the middle lobe of his right lung.  When they tried to get there with the scope, they came to a dead end.  There is really no way to see if he is actually missing it unless he has a CT.  The doc also said that sometimes it is there, just other vessels grow around to supply it with oxygen.  She also said that it can show up in kids who have upper respiratory abnormalities like Cayden.  Because he has no problems in that area so far, no need for a CT until he is older. 

Cayden's endoscopy was also successful.  Everything looked as it should, just lots of bile.  But overall, his GI doctor was pleased.   

The fasting and early morning were the hardest for Cayden.  His surgery was scheduled for 7, but we had to be there at 6.  Cayden didn't get in until 8, so he had been fasting for 8 hours at that point.  He was upset to say the least.  He cried straight from the moment we got to Children's until we got him a bottle in the car at noon.  He was so irritable and exhausted he just screamed. It was pretty terrible and I am so thankful Phil was there too.  It made all the difference.  I should say that the only time he didn't cry was when the OR nurse took him away from me to go into the operating room.  Strange for the kid with extreme separation and hospital anxiety!

I am happy it's done and we can move forward now knowing that he is bug free.  No psuedo, no mrsa, nothing! 

Tuesday, December 14, 2010

Moving Forwards

Cayden did not end up getting his scheduled bronch and endoscopy early December.  Around the evening of the 20th of November, Cayden came down quickly with all the symptoms of a cold...and it hit him hard!  By Monday, Cayden couldn't sleep at night because of fits of coughing and he had lost his appetite.  He also lost his energy and was super lethargic.  I was debating on whether to call the clinic or not thinking that maybe we should give him a chance to beat it on his own.  I ended up calling them, and got a call back saying that he should be asessed by a respirologist.  Because of his bronchoscopy coming up in a week, they really didn't want Cayden being on antibiotics, because then it would have to be cancelled.  I left work quickly and got Cayden to the clinic.  I didn't even grab him food...I thought we would just be seen and then sent home.

Cayden was seen by the Respirologist and they were quite concerned by his croupy cough.  Croup is pretty common with infants, but combined with Cayden's tracheomalacia and stenosis (narrowed and weak trachea), it actually is very dangerous for him.  Because of this, they wanted to admit him to give him some steroids to try and open everything up a bit.  First they wanted to try and suction his lungs to get some of the mucous out so hopefully he could breathe a little better.  They would also be able to culture it and try and see what bug was in his lungs. That was the hardest thing I have ever had to see.   Cayden was completely traumatized after that.  He was shaking all over and started crying and getting panicked everytime the door would open.  He just had this look of defeat in his eyes after.  It was so heartbreaking.

We got settled into our room and were just awaiting orders for the nurses.  Cayden wouldn't let anyone get near him to listen to his chest or to do vitals.  It was a fight to get any of that done.  We met with physio and they tried to do some CPT but of course he screamed when they got close.  It probably didn't help that we were on isolation so everyone coming in had yellow gowns and masks on.  The Physiotherapist said it wasn't good for him to cry so hard, because it was probably making things more inflammed so I ended up doing the physio that night and we would try again next time.   In the hospital, CF'ers get physiotherapy every 4 hours, so I was hoping he would relax a little for the next one.

Because I wasn't prepared for a stay, we had nothing! I had to run out and buy some pj's for us and bottles and milk for Cayden to drink.  I also had to buy some toys because he was not allowed out of his room due to the isolation.  It was a little crazy!  I think I will always bring an overnight bag just in case now.

The steroids seemed to really help and Cayden got some energy to play a little.  The next morning we tried doing nebs and the nurse insisted on doing it and that just set Cayden off.  He rarely cries anymore during nebs at home but this time, I don't think he really inhaled any medicine.  After that, physio tried to pat him again but of course, he wouldn't let them.  The physiotherapist did start with a neat move I had never seen before though, he put both hands on Cayden's chest and kind of tensed up his arms and vibrated him.  Cayden coughed so much during that.  It was really cool and I would actually love to learn to do that.

By the time the Doctor saw us, I had gotten new that we would probably be sent home due to overcrowding.  THey sent us home with some more steroids to keep on hand and that was about it.  I left feeling like it was kind of a useless stay.  All that stress! 

Because Cayden was so sick, and his bronchial tubes were so inflammed, it was decided to post-pone the bronchoscopy.  If we went ahead with it, we would risk irritating his lungs even more.  We are at clinic next week, and will set the date for early January. The clinic called last friday to follow up on his cough, and he was still the same so they prescribed him some antibiotics.  That night he slept really well and started getting better so I am pretty sure it wasn't the antibiotics that helped.  Oh, and Cayden's culture from the suction only came back with Rhinovirus, which is a pretty common cold.  I hope all of his colds will not be like this...It will have been 3 weeks of sleepless nights and yuckyness. Cayden just lost his cough this past weekend and seems back to normal now!  Thank goodness....we were beginning to get cabin fever around here. 

So that's where we are at this point.  Now that we are private, I am hoping to be able to post more and with more details too. 

Hopefully this all made sense!   

Sunday, December 5, 2010

Going Private

I orginally started sharing our journey with CF to help keep our family and friends updated on Cayden. Then, I began to meet other CFers and CF moms.  It became a great outlet for advice and hope into Cayden's future.

I also knew that everything we put on here is available to anyone.  I tried my best to keep names of hospitals and Doctors out of it, to try and keep a little bit private.  I did not realize the types of creeps out there, ones who like pictures of babies in diapers, etc.  I am disgusted. 

I hoped that sharing our story might help other new moms of CF but unfortunatly it has attracted some of the scum of the earth.  

Lately I have received some creepy calls and friend requests on facebook.  So, in order to protect my family and give Cayden some privacy, I will be making this blog private in a week. If you would still like to read our blog, leave me your email and who you are and I will add you to the reading list. 

Thank you to everyone who has shared positively in Cayden's journey this far.

Once the blog is private I will be updating a little more.

I know that it is a pain in the butt to read private blogs, but I hope you will keep reading.

Friday, November 12, 2010


Cayden visited his CF team this past week mostly for us to sign some paperwork before Cayden's upcoming bronchoscopy and endoscopy.  Cayden is doing really well--gaining weight and is super active.

Cayden has had a bronchoscopy before when he was only 5 days old.  With that, he was diagnosed with Tracheomalacia and Subglottic Stenosis.
The reason we are doing a bronch this time is because Cayden has been on antibiotics for 2 weeks of every month of life.  That is just too much.  The bigger problem is that the antibiotics do not seem to do the trick.  Cayden's symptoms go away for a couple of weeks and then return again full force.  All of Cayden's throat swabs have not cultured any abnormal growths so it is suspected that the bug is deeper into his lungs where a throat swab cannot get to.  Because Cayden is so young, he is not able to adequatly cough a suitable sputum sample that could tell us what is going on so that is where the bronch comes in. 

In a brochoscopy, Cayden's doctor will thread a bronchoscope through Cayden's mouth and down into the bronchial tubes.  From there, they look around to see if there are areas of inflammation or infection.  They also will flush the lung with saline and then suck some of it back up (called lavage).  This will be sent to the lab to be cultured.  Some of the lavage will also be used in a study going on through the university.  The study is looking at the live cells under a special microscope in young cystic fibrosis patients. Cayden will be put under during this procedure.

Here is a youtube video if you are interested:

Either before or after the bronchoscopy, and while he is still asleep, Cayden will have another procedure called an endoscopy.  In this procedure, Cayden's GI doctor will use an endoscope to look at Cayden's esophagus, stomach, and his duodenum.  The Doctor will also take small tissue biopsies of the esophagus, stomach and duodenum.  The GI specialist has added this exam on to the bronch because Cayden has had some trouble in the past with bacterial overgrowth and reflux so we feel that it will be a good opportunity to get another test done while Cayden is sleeping as to aviod Cayden being put under twice.

Here is an animation of an endoscopy being done:

While Cayders is out, they will also repeat some bloodwork that needs to be done fasting, which is great...I kind of feel like we are killing 3 birds with one stone!

Both procedures are pretty routine; however it is still hard to make the decision to do these things to Cayden.  There are risks, mainly the anesthesia but we believe that it will be the right thing to do and hopefully we can find out exactly which bug is in Cayden's lung (if any!) and then move forward!