The Cough

Here it is, a time where everyone has been asking me how Connor has been doing and for some time now he has been doing great, people around him get sick, but he stays strong and healthy.  Last night his mom got back from a trip to Michigan and he started coughing, he was coughing so much he ended up puking throughout the night.   He had to come talk to me a couple of times between 1-2am because there was a discrepancy of his description of how much his stomach hurt.  He had previously told me that his stomach hurt this much (extending his hands about 4inches apart) and then later on came in and said “dad you know when I said my stomach hurts THIS much, well it really hurts THIS much(now it was only about 2inches apart).  I walked him back to his room and stayed with him while he got sick and just like always he happily climbed back into bed and goes to sleep as if all of this is just regular for a six year old to do.  Well, the last time I put him to bed I told him to come get me if he felt sick again.  I forgot how literal kids are and so around 3am Connor came to my bedside, gently tapped me on the shoulder, I rolled over to look at him in the face, and then he puked all over me.  I rushed him to the bathroom so he could puke in the toilet and asked “buddy why didn’t you go to the toilet if you were going to get sick?” Connor replied “Cause you told me to come to get you instead”  There wasn’t much else I could do except laugh and know that he did exactly what I told him to do and that without the humor that I try to attack everything with the evening would be just too much to bare.  Connor is the strongest person I know, he battles his disease everyday with a wonderful attitude and when it gets bad it doesn’t even seem to phase him and occasionally his dad gets thrown up on.

To address this stomach issue and coughing we will be going back to the hypertonic salin solution that seemed to do wonders for Connor and then see how that works.  If we don’t see any progress then we will contact the doctors and see what their advice is to address the coughing.

Thank you all for your continued support

CF bike Ride

This are moving along with the Cystic Fibrosis Bike Ride.  Our event date is November 13th in hopes that it will be a great route for training larger races/rides around this date in the valley.  The course is also very beginner friendly courses so if you are interested in helping to raise funds for CF and you like to ride keep an eye out for more news on the Cystic Fibrosis 65 roses bike ride coming in November 13th 2010.

Follow us on your rss feed at teamconnor.com/feeds

New Antibotic for CF

We are very excited to announce that late yesterday the U.S. Food and Drug Administration approved an important new inhaled antibiotic for the treatment of cystic fibrosis called Cayston (aztreonam for inhalation solution).

In addition, our pharmacy will be one of only several Cayston distributors in the country.

Finally, a Cayston call center developed by Gilead and our pharmacy was launched today. The program will assist people with CF and members of their care team with insurance verification, co-pay assistance and claims support. For more information, go to www.cayston.com. 

For more infomation about this story click here. 

Birthday

Today is the birthday party, well the 6th birthday party this week for his sixth birthday.  Connors mom loves to celebrate her birthday so she has passed it on to Connor.  We had a prebirthday celebration with bowling, a birthday party with friends on his birthday, a birthday party a school, a birthday party with a couple more friends and his grandma, a trip to the Monster truck rally with his buddy Anthony and now his big BIRTHDAY PARTY!! I think its excessive but Shanna celebrates her birthday during the entire month of October so this is actually a little reserved. 

Connor is doing great health wise and we are on a good track, unfortunately we lossed our favorite Doctor at Phoenix Childrens Hospital but I am sure they will find another great replacement for the CF team there.

Thank you again for your suppor and rememeber you can follow us by adding us to your feeds at www.teamconnor.com/feeds/

Connors 6th Birthday

Last night we went bowling to celebrate connors birthday eve.  Yes birthday eve!  This is something his mother has created, in fact I wouldn’t be suprised if Connor pulls out the old “This is my birthday week, or This is my birthday Month”  as his mother does in October.  This morning Connor woke up and asked if I noticed anything different about him and I knew it must have something to do with being 6 rather than 5.  I answered “no” and he said ” I think I am a little bit bigger because I am six”  I agreed and we came to the conclusion that he grew about 4 inches over night.  Yes he is my son for sure and he is a proud little six year old.  He gets to celebrate his birthday 3 times this week, once today on his actual birthday with dad buying the latest in belt fed nerf gun and opening fire on him when he gets home from school.  He will have a new weapon as well, but it only holds 30!  Mine has a belt that I believe holds a 100 and has a tripod mount.  This is crazy but lately this is a family activity where we all get involved and shoot each other.  It is great fun.  Wednesday he celebrates his birthday at school and then this weekend at crackerjacks for put-put, arcade, pizza, & racing the cars around the track at 3 mph!!!  

Remember you can receive our feeds at www.teamconnor.com/feeds

Today Connor is doing much better.  His lung function has dramatically improved and his coughing has all but stopped.  We continue to monitor his coughing because it is the first tell tail sign that he has a serious infection again, but this time it seems to be staying away. 

Last night Shanna asked about his breathing and why he was taking shallow breaths and he should us with his hands how much oxygen he had in his lungs illustrating that there was about 2 inches of oxygen in his lungs and this is why he was breathing that way.  In fact she heard the wizzy of air through Connor’s boogar encrusted nose and this is what was making the weazing sound she heard.

Connor is back at school and he missed 25 days the first half of the year so we are making it a goal change this, I tease him about girls, he talks nonstop about the wii, starwars and we play baseball so right now he just your normal 5yr old.

Connor Update

Christmas is two days away, we have our tree up, lights out, decorations around the house and we might have to spend Christmas at the hospital.  Since the last post we have been battling what seems to be the same infection.  Antibiotic after antibiotic we work through, some seem to work and others not so well.  In both cases after Connor gets off the antibiotic he gets worse. 

Last week we took him into the CF center and his o2 levels were good at 95%, but his Pulmonary Function Test(PFT) was at 60%.  The normal for most kids is a 100%, while Connor’s norm is 130% meaning when he is good he is GOOD but 60% is the level that triggered his hospital visit in August.  Because we were so close to Christmas we decided to double and triple his treatment at home and go onto an aggressive antibiotic to clear up his infection.  We also put him on hypertonic saline, which helps break up the mucous in his lungs but also causes him to cough during treatment.

Today we have another doctor visit at PCH and it will determine whether or not we will go into the hospital for a week of IV antibiotics, intensive treatment and around the clock doctors checking in on Connor.  While in the hospital Connor has access to the Wii, fisher price cycle, Xbox, & play station so he has assured us that if he has to go in he will be able to play games so that’s not so bad.  Shanna & I however are having a more difficult time with the situation. 

We wanted to update the site so people can see what is going on with Connor rather than having to speak to everyone about it.  While we appreciate everyone’s concern, prayers, & calls it gets overwhelming having to bring it constantly to the surface and really face what is going on with our little boy.  I would also like to apologize that we have, in the past updated “the bad” about Connor and will do a better job of updating you all on “the good” about Connor

Hospital Visit

Well the past three days have been pretty difficult for Connor.  On Thursday we took him to Phoenix Childrens Hospital (PCH) for a checkup because we were still waiting on tests results and wanted him to get better, but his symptoms of puking, coughing, and being tired were increasing.  It took all of 5 minutes at PCH for them to tell us that he needed to be admitted.

Connor was check in and then went to surgery to have a Pick Line put in so that they could administer IV antibiotics & draw blood if needed.  When he came out of surgery he was angry and told everyone that his Mom had ruined his day, but his O2 levels were down significantly so he was moved from his room and placed in ICU on Thursday Night.  They watched him round the clock, constantly waking him up to poke, prod, & check vitals.

Friday morning his o2 levels were better and his attitude was getting back to the normal Connor that we all love.  doctors came and said that he could go back to the floor and then we changed his O2 mask to a nasal inhaler that goes directly in your nose and his demeanor change dramatically and he became quite angry, nonetheless we were going back to the floor.

We got back to his room 3pm Friday, I left him in pretty good shape and mom took over.  I got home told my father in law all was good to go and then got a call from Shanna.  It seems Connor is working too hard to keep his O2 levels up where they are and where they are is not that good, we are at 90 out of a 100 and usually Connor is around 98 without O2.  They told Shanna that we needed to increase chest therapy from 2 times to 4, that they were going to make more frequent visits to his room because they were concerned and that we needed to increase his O2 level from 2 liters to 8 liters and if all of this did not help he would have to go back to the ICU.

Saturday Morning:  Shanna reports that Connor is being a pain in the rear, which is his normal self and a good sign, but his vitals have not changed that much.  Rounds are coming soon and then we will get to speak to the doctors.  We will let you all know as we get more information.

Dad

Test Results

Today we were told that the infection in Connors lungs are two seperate staff infections.  We have been treating a staff infection over the past couple of months with no luck but it might have been because this new strain was developing in his lungs and is more resistant to the antibiotic, Cipro that he was on.  They have not confirmed what type, or strain, or whatever this new staff infection is and they don’t expect to have the full results until Monday.  On monday we hope to have more information and a plan of attack for Con’s lungs.   Good news is that they believe that the staff infection will be treated with an oral antibiotic vs. an inhaled treatment.  This is great news because we thought he might have to do another round of Tobe, which is an inhaled treatment that takes 30-45 minutes and we are already at an hour of treatment each morning and night.

Broncoscopy

So yesterday we went to Phoenix Childrens Hospital(PCH) to have connor get his broncoscopy and Endoscopy.  He was a little nervous but everyone was doing their best to make him feel at ease.  He got a new toy from his Nanny.  Shanna was explaining what was going to happen and offer a great deal of love and comfort and I was telling him how strong he was and telling him it wasn’t fair that HE got to get all the treats just for going to sleep.

When we got to the hospital the PCH staff did a very good job of explaining what was going to happen and making him feel comfortable, he watch movies and joked around and then we took him to the operation room.  Again we are talking about Connor, he is not your normal five year old boy.  He did not seem worried, or scared, or anything.  In fact he enjoyed the ride on the gurney and inhaled the anesthesia as hard as he could because you could make the balloon in the room increase and decrease the harder you inhaled and in no time at all he was asleep.  Then the parents freaked out it is no fun watching your little boy have any procedure done regardless of the fact that the entire thing took 20 minutes and did not hurt a bit. 

After the procedure con was a little groggy,  but when I whispered chocolate and apple juice he purked up right away.  Right now he is running a low grade temp which is to be expected but his attitude and energy level has not change one bit he is still the hyperactive kid he always was, which is a great thing.

The Results of the endoscopy showed perfect stomach and lower intestines that looked perfect so they took a biopsy and we will get results on Tuesday

The results of the broncoscopy showed an infection throughout his lungs so they cleaned out as much as they could and took a sample of the mucus and we should get the results of those tests on Friday.  I believe it is psuedomonis and shanna thinks that it is still the staff infection that we treated with Cipro but apparently with no success.

Yesterday was just a day to gather information so that we can take a more active approach in treating con’s cough.  This is not the last time con will have these procedures done and it is something that our family will have to get used to. 

We appreciate all of your prayers and will pass them on to our little boy.

anesthesia