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!!!  

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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

Connor’s Summer Camps

Along with all the “bad” news about Connor’s health I think its important to note that it has not slowed him down one iota, NOT one.

Connor has already gone to one sports camp and is currently enrolled in a Vacation Bible School.  He is having a great time and making many arts and crafts.  Two of his best friends from Preschool are in the class, Christopher & Andrew.  Connor talks nonstop about VBS and the boys when he gets home and Connor is having a great time.  Kindergarten is right around the corner and as I am typing this I forgot I am supposed to go pick up a packet from his new school so I will update you more on Connors life as it happens.

-Dad

Connors Health

So over the past week we have been to see Connor’s doctors at Phoenix Children’s Hospital(PCH).  PCH is the CF center here in AZ.  In any case Connors lung function have always been way off the charts, where you can expect a 100%, Connor would have 130% or more.  Where your O2 level best level would be 100% Connor would usually have 98 and now has 93.  For him these levels are not exceptable, they might be for other kids with CF that have never maintained such a high level with regards to lung function but not for Connor.  Our last doctor visit we decided to go forward with the Bronchoscopy and scheduled him with a GI specialist because he is still puking after meals.  They believe that food might be getting into his lungs and in turn triggering the puking but it was just a guess and that is why we are supposed to see the GI specialist next week.   The broncoscopy should be scheduled for the week after and this will tell us if he has psuedomonis or another bacteria infection that is affecting his lung performance and O2 levels.

His eating has been sporatic at best and when he doesn’t have enough food in his system he asks like a complete loon, irrational, angry, and just like his grandfather Papa Mark.  It is hard to judge when he is hungry because he really doesn’t know when he is.  He could litterally go all day without eating and be okay with it.

Connors Health

Connor has been on the Cipro for three days now and we have seen a slight improvement in his coughing.  The nightly puking has decrease a little bit because mainly we have backed off pressuring him to eat during the evening.  I figured it is better to get a little food in his belly instead of having all of it come back up onto the ground.  The morning dry heaves have continued consistently, but with more mucus than bile and I believe that this is going to be the norm.  We go in on Thursday for another visit and will know more then.

-Dad