On the 13th day of Hospital stay the Doctor came to Me.....

and said Keagan can go home tomorrow! I was so happy given the previous day I was not happy with what the attending physician had stated what her plan was for Keagan. See, Keagan's CF dr is the CHIEF PULMONOLOGIST so he was never the attending physician. He only popped his head in and out a few times while we were there! The two weeks Keagan was in the hospital he had a bronchoscopy, 4 chest xrays, an upper GI, a pH probe impeadance test, a modified swallow test, and 2 fat tests on his stool. The first week was ok and Keagan finally started clearing up that friday, so i was super excited! But then monday came and he sounded crappy again! so that's why they did the modified swallow test because they thought he may have been aspirating (food going into his lungs when he swallowed) but that test came back fine! Oh by the way so did the upper GI and the PH probe test just showed reflux which we already knew! Since I was in the hospital with an 8 month old by myself, I had a lot of time to think and it dawned on me that the previous sunday the respiratory therpists that did Keagan's CPT did not do it very aggressively so that's why he sounded sooo crappy that monday! Well on tuesday, the attending physician had stated that she wanted to may be switch antibiotics. Ok, WAIT! If you read the other blogs about the hospital stay then you already know he didn't have a bacterial infection. So why the flip did she want to change antibiotics?!?! I was angry! The next morning, I put in a request that I wanted to talk to Keagan's dr! So luckily he was on the floor briefing a family whose child was going to have bronchoscopy that morning so he stopped in for a minute and I told him that I wanted to know HIS plan for Keagan's remaining treatment! Oh yeah because not to mention, Keagan's dr wanted an allergist to come see him while we there because he thinks Keagan may have a milk allergy which never happened due to poor communication between the resident doctors. So later on that day, Keagan's doctor and the attending dr came in and told us we were going home the next day...WOOHOO! So Keagan's treament plan is: 4 puffs with the albuterol inhaler 2x a day, pulmozyme with nebulizer once a day, hypertonic saline with a nebulizer 2x a day, Zenpep enzyme, Soy formula, and CPT 4x a day! That concludes our first hospital stay for Cystic Fibrosis Exacerbation!

As Time Goes On....

So today we have been in the hospital for 1 week and a day...I AM GOING STIR CRAZY!!! Yesterday Keagan had an upper GI done to make sure his GI anatomy was correct and that everything did what it is suppose to and it came back normal...thank goodness! But we had some med changes yesterday so hopefully with the changes comes improvement! They changed the hypertonic saline from 7% to 5% because they are thinking the 7% may have been causing him more irritation! He is now on Prevacid 2x a day instead of just once. He is also on a stronger enzyme from Pancreaze 16 to Pancreaze 21 since he was still passing a lot of fat in his stool. And his albuterol changed from 2x a day through a nebulizer to 4x a day with an inhaler. We are also goin to give him motrin today because he seems to have a sore throat from all the coughing. When he has his coughing spells he makes himself stop coughing by gagging because he doesn't want to cough because of his throat! But it seems that since the bronch and they suctioned all the mucus out of the left side the problem has switched to the right side so IDK! They did a chest xray this morning so have to wait for the doctor to do rounds today for the results! Well hopefully we get to go home soon....

Hospital Stay...

So we are in the hospital for Keagan's first time! Last week, Keagan's CF doctor decided it would be a good idea to do a bronchoscopy and to go ahead and admit him to start IV antibiotic treatment while we waited for the culure results to come back. This decision was made because Keagan had a cough/cold for weeks and was n ot getting any better with augmentin (antibiotics). The bronchoscopy was done last thursday and he was admitted directly after. The dr said he had a lot of mucus down in his lungs but he was able to get most of it out. So he was started on Timentin (every 6 hours) and Tobramycin (once a day). He was also started on breathing treatments. He gets albuterol (2x a day), hypertonic saline (2x a day), and Pulmozyme (once a day). His CPT has also been increased to 4x a day. On monday we got the results from the culture, they were NEGATIVE!! The hospital stay has been ok other than the fact that i am beginning to go a little stir crazy! The hospital is 2 1/2 hours away from where we live and family (including my husband) has to work so it is just Keagan and I. Family was able to be here from last thursday til this past sunday but they all had to go back to work :( He was still coughing a lot which has his dr concerned but today (Wednesday) he is finally beginning to show some improvement! On friday, they are going to do a chest xray and that will determine if we go home or stay and they will begin doing GI tests. The GI tests will either be to see how bad his reflux is, how much acid he is producing, or to make sure he is not aspirating food into his lungs! So we are praying for clean xrays!! Today his respiratory therapist said that with each treatment so far today he is sounding better and better! He also has not been coughing as much today :) But I really like CHOA because they have a floor specifically for CF and the nurses on the floor are specifically trained in CF! Keagan absolutley hates the Neb mask...lol! He doesn't fight it but he screams! Since he is coughing more/harder from starting the breathing treatments, he is hoarse! But anyway, I am just ready to go home....

Twas the night before....

So it is the night before Keagan's first bronchoscopy and hospital stay!  I am definitely overwhelmed by all of this!! And I am a big "what if" person, so I just can't help but to sit and wonder that what if they would have put Keagan on a breathing treatment when the cold/cough first started to help move all of this mucus would we still be having to do this? I mean I don't know but maybe I should have been more aggressive with it too! Every experience is a learning one, right? Well it is kind of weird because I packed for a hospital stay but I feel as though I packed to go on a vacation mainly because the hospital is about two and a half hours away from where we live so it's not like if I forgot something I could just run home to get it or have someone bring it to me! Well I am just super nervous and hoping there are no complications with the bronchoscopy and I will be super upset if we miss his first christmas at home :(. But I would just like to add that if anyone reads this who has a perfectly healthy child then you just don't know how lucky you are. Those of us who have a sick child would not trade him/her for anything in the world but ya'll just do not understand how lucky/easy you have it not to constantly have to put your child through treamtents. And if any of you who does have a healthy child sit there and say how you need a break from your child I would like for you to think again because us parents who have to give our children that extra love/care/time for treatment never want a break and it is physically/mentally/emotionally exhausting and we want our children right by our sides 24/7! There are times that I def envy those who have a healthy child but there is nothing in this world that I would trade my Keagan for! I love him dearly and he his my heart, soul, and world! I know I was chosen to give him a perfect life in the world of CF and that is what I am going to do! Well on that note I am going to try and get some sleep (doubt that) as Keagan is sleeping peacefully in his bed...lol! that is usually how it goes for parents! Well goodnight world and check for updates as we are going to be in the hospital for a few days :( See ya soon.....

The past 7 months in the world of CF

Since we got the news of Keagan having CF, we had to adjust a lot but now it is all second nature to us! Thankfully we have not had any complications/hospitalizations with CF! We do his CPT as our way of putting him to sleep for naps and bedtime. The enzyme is just basically added to his food when he eats (it has to be given in applesauce) but as he gets a little older he will just take it as a pill before he eats or has a snack. As he gets older there will be other things added on a daily basis such as breathing treatments but as to what type it will all depend on his symptoms. He takes a reflux medicine first thing in the morning. As he gets older, he will also convert from the CPT to a vibrating vest that he will wear for a certain amount of time. And yes this will all be life long! He will not outgrow CF as some may think! He has just finally reached the 50th%ile for his growth as he when he was born he was only in the 10-15th%ile. This past weekend we have had the problem of him refusing to take a bottle and vomiting when he eats baby food so not sure what is going on but today (11/22/2010) i am taking him in to be checked out by his pediatrician to make sure he is not dehydrated! But check for updates in the future as this is where I will be posting his CF updates rather than on Facebook!!

How we discovered CF

For part of the pregnancy, we lived in Metaire, LA. In the state of LA, they automatically screen pregnant women for Cystic Fibrois. So when they did the initial blood draws for all of the blood tests they do, the CF carrier screen test was done on my blood. When they called me with the results, I remember the nurse saying "The blood work came back positive". I was thinking to myself "OMG what in the world could have came back positive" and then she said "for a CF carrier". I had no idea as to what cystic fibrosis was. So immediateley, I began researching CF online. A couple of days later, I went in to discuss CF with my OB/GYN and she suggested to have my husband tested to see if he was also a carrier. So, he was tested a couple of weeks later. The test came back positive as well. We had no idea that this disease even ran in either one of our families. After we found out that we were carriers, we were told that we both had cousins that had it who were 2 years old and 3 or 4 years (one on my mom's side of the family and one on his mom's side of the family). When I was 18 weeks pregnant, my OB referred me to a perinatologist as they can look for certain "markers" on ultrasound for gentic diseases or they could do an amniocentesis. The certain marker they look for on ultrasound for CF is echogenic bile. With echogenic bile, the bile duct appears white (like the bones) on the screen instead of grey. Keagan's ultraound showed the echogenic bile. This did not mean 100% that he was going to have CF but it meant that his chances were increased. The perinatologist offered me an amniocentesis but i denied it because it would not have mattered to me either way. I was not going to terminate. So when I was 32 weeks pregnant we decided to move back to our home town. I delivered Keagan at 39 weeks and he was delivered via c-section. When he was 2 1/2 weeks old it came back in the newborn screening that he had inherited both mutations (D-F508) meaning he did have CF. When he was 3 weeks old, we went to the Children's Hospital at Egleston in Atlanta, GA (which is 2 hours from where we live). This is when he had a sweat test to confirm the diagnosis and we had our first visit at his CF clinic. And so the treament begins!!