Oops! Did We Forget to Tell You....

Hey everyone! Well, Kenz is in the hospital again. We are still new to this blog thing and we got so caught up in his actual care and time at the hospital that we absolutely totally forgot to update the blog and really tell anyone. Our bad. :-(

Kenz went into PCH a week and a half ago after being sick for the previous 6+ weeks at home. We wanted to hospitalize him but he had not had the H1N1 shot and the flue was rampant at the hospital so the doctors wanted to keep him away if at all possible. He finaly got the shot and had to wait 10 days before being admited for it to take effect. We could not do IV's at home because he did not have a new port and to get one or get a PICC Line would require going into the hospital...and so on...

Well, he is doing better now, not a huge amount but still is better. He had the IV Port surgery as well as another Bronchoscopy and might have another sinus surgery before this one is over. We are hoping and expecting to have him home for Thanksgiving, especially with his oldest sister, Hannah, coming home for a while.

Not a lot of dramatic details at this point. He is bored as usual and is naucious a lot but his home bound tutor and counselor come to the hospital to see him and he loves phone calls or posts on his Facebook page. We will update the blog shortly with more details and such.

So as of this time we are doing ok, tired, somewhat stressed and all but we are managing I guess. Hope all of you are good and healthy!

Blessings,

Matt for Amy and the fam

Hi There!

A while ago, I went from being a stay at home mom in a house full of the laughter & drama of three awesome teenagers to working full time, cooking and cleaning less often, and tearfully watching my oldest child "fly from the nest" towards college. Gosh, I miss you Hannah!

I also gave up overseeing Mackenzie's "CF daily routine" and placed his care in the capable hands of my husband and Mackenzie himself. Together, they have been doing a great job! It's felt like I've been on a vacation which is a weird feeling because we live in the same house. It's been 17 years of "here are your meds and do your neb & how are your sats?" and I didn't realize how much I missed it until this week when my dear husband went on a business trip and now I'm trying to work and keep Mackenzie out of the hospital.

Last week, Mackenzie went to the CF Clinic for an ongoing sinus infection and increased lung congestion. He was started on a 5 day course of Prednisone (20 mg) and 3 weeks of Minocycline (10o mg). The steroids have since finished and so far I think he's a little better.

Well, it's off to work for me. I'll update again later when I return tonight.
Amy

Mackenzie's Summer Adventure Shifts to Oregon

Sorry for the two week gap in updates. We have had a couple of pretty quiet weeks with Kenz and sometimes you just have to stop and be. But now things are much busier. Oh...the pic to the left is Kenz with his friend Isac at RecFX Surf Camp this summer. As I write, Kenz and I are up in Oregon seeing relatives, friends and bringing more "Stuff" to Hannah who is up here now to go to college.

We left Phoenix on Wednesday early am and drove through San Diego (picking up Ryan M.) and then strait through to Keizer, Oregon outside of salem. Ryan was an animal driver the whole way, Kenz hung out in the back seat of the truck with his computer alternating with naps here and there. He is now bouncing back and forth between family seeing cousins, aunts and uncles, grandparents and anyone who will spend time with him...which is pretty much everyone! So he is most definently having a great time!

Overall his health is good and stable right now but he is constantly battling little infections. School started for Grace already, but Kenz is going to be doing pretty much all his classes online this year. He has been getting them all set up and hoping he will have tutor support from Mrs. Reed again this year, who did a really great job with him lastyear!

That is pretty much all for now. But I will post some pictures from our Oregon trip in the next day or two so stay tuned!

Blessings,

Matt

Mackenzie's Surf Camp Experiment

Greetings!
It's been a while since I've sat down to blog. Matt & Hannah have been away at the beach running three more weeks of Surf Camp. I've been working about 40 hours each week and trying to stay cool here in the Desert. I love my job & I'm especially fond the few hours I get to teach the "little ones" how to swim. Mackenzie arrived home safely (Thank You, R Family) and has been doing well since. He made a significant discovery while at camp in regards to his health and I asked him to share some of his thoughts. So, here are some of Mackenzie's thoughts expressed in his own creative way:

“Welcome to the first and hopefully not last chapter of Ready, Set, Cough!: An Examination of Popular CF Myths. This is where we take popular myths about anything Cystic Fibrosis and test them to see if they are in fact true. The testing is done by yours truly, Mackenzie Augee.

Disclaimer: All results are done by only one patient and therefore results may not be the same for others. Results are not talked about with any CF Doctors so trying these results are not recommended before discussing it with your Doctor. All results are thoroughly discussed and tested before a conclusion is made in order to give the most accurate result.

Myth: It is better to sleep in a tent when outdoors, especially when in humid climates.

Testing Conditions: The patient involved slept on a lounge chair outside facing the ocean while being no more then 50 feet away at any given point. The patient also had a chronic problem of getting sick within a week there every year previously while sleeping in a tent. The patient also only had a pillow, sleeping bag, and a wool blanket.

Results: The patient was at camp for ten days and is still healthy (Well, as healthy as a CF patient can be…) going on six days being home from the camp. The patient noticed a vast difference in the humidity outside then in the tent with the outside being a lot less humid and therefore easier to breathe without struggling while sleeping outside.

Conclusion: Based on the evidence, I would have to conclude that this myth is Busted. The reason for that being that when thinking about the experience, I found that being in a tent does not help because it traps moisture in it, making it exponentially more humid than outside. Remember, this conclusion is based on my own experiences, so what may be true for me may not work for others. Thanks for reading this, and I hope that this has helped.”

Kenz is Thriving at the Beach!!

It's crazy how some things change so quickly. Just two weeks ago we were totally caught off guard with a fast moving infection in Kenz's lungs and that gets knocked down in a week and a week later he flys to San Diego and is hangin' out with Hannah and I and a bunch of others at our RecFX Surf Camps. Crazy...but a good crazy!!

He has had a super week with his friend Nathan and thy slept outside in recliner type beach chairs at the high water mark and just loved the nice comfortable nights...except for the mosquitos of course. He has opted to stay until this Thursday and so far is doing great! I will try to post some pics tomorrow.

In the mean time Amy and Grace are back home in the 114 degree Valley of the Sun and are really hating it. Please pray for Kenz to stay healthy and for Amy and Grace toughing it out in the heat. Blessings to all! Matt

SUPER DAY YESTERDAY...KENZ CAME HOME EARLY!!!

Always making faces at the camera!!

Ok, yesterday was a great day! So great that we forgot to share it with anyone!! Oops! Our bad! :-)

We were very happily surprised that Kenz was discharged from PCH yesterday and go to come home only 1 week into the hospital stay. The reasons are that 1) what got him sick was not the usual bacterial suspects but a non influenza "flu" backteria (hard to explain because his doctors had trouble explaining the "flu" part) that he had never had before and because of the bronchiospy proceedure on his lungs last Wednesday they were able to isolate the culprit and attack it directly with the correct antibiotics and meds. The results were very quick in turning things around! The amazing thing is that when he went in his lung function (FEV1) was in the upper 40's and low 50's, and at the beginning of his test on Monday he was at 57, but by the end of his test (post meds) he blew an amazing, incredible 80!!! Truly celebration worthy number there!!!!

So I went and helped get him discharged and brought nome on oral antibiotics so he can finish the treatment here at home! It is ALWAYS great to have him home!!

That is all for now, but maybe more later. We have lots to do today!!

Matt

Flyin' Solo in the Hospital...for the Moment at Least

The past four days have been a real frustrating drag to be honest. Not only is Kenz back in the hospital but the following morning Amy, Grace and I all woke up with either sinus or chest congestion. Amy has been struggling through it still working and Grace and I have been pretty much on our backs at home. This is just frustrating!!! With us sick we can't go up to the hospital at all and are left just calling or talking to Kenz on Facebook. Not that it is all bad, but we want to be able to see him and be there to talk with him...and play Wii...well, that would be later when he is a lot better, right? But for now we have to stay away and Kenz is already frustrated being alone all the time.

Hannah made a trip up there with two friends for an hour today to deliver clean clothes and other stuff including some new Legos to surprise him and keep him a bit busy. Hopefully the antibiotics are working well enough on me that I can go see him this weekend. As Kenz has gotten older we have increasingly enjoyed spending time together while he is in the hospital and he and I both are really missing that time right now. I have not been sick like this for over 18 months and I have a week and a half before I have to head back to San Onofre, CA to run our surf camps for the next three weeks so I really want to be with him now. If all goes well our plan is to spend the 4th of July with him watching fireworks around the valley from his top floor perch in the hospital.

Amy has been such an amazing trooper gutting it out in a full time job that streatches her physically and and emotionally. She really misses being the fulltime mom at home...and we miss her doing that as well. But for the time being we have to endure until we can make things change. We are all just very proud of her for the sacrafices she makes for this family and especially the incredible care she has given Kenz over the years.

Today the doctors made changes to his IV medications after identifying the different bacteria that he is growing in his lungs. Hopefully this will dial in the correct treatment. At the same time we found out this afternoon that a new resident doctor at the hospital made some changes to three medications that Kenz has taken for a long time and without our consultation. We have talked to his pulmonologist and he is checking into the changes, saying that he was not aware of any changes as well. They happen to be the two meds he takes for nausia and stomach acid as well as the daily pain med. So he has been sitting there for three days without these meds and no communication from the resident or attending doctors as to why he needs to suffer like that. It just frustrates me a lot. So we are waiting to hear what will happen there.

Well, we have included some new pics from his admition day last Tuesday. He really looks good in these pics...but don't let them fool you. CF is such an internal disease and he has learned to easily put on a smile or act it up for the camera. He doesn't want to bother anyone with his struggle. Anyway, we thought the pics were kinda fun. At least he has a great attitude!! :-)

Well, for those in the US have a super 4th of July holiday. For all of the rest of our friends, family and blog friends...have a super blessed day! We will do the same. Thanks for your thoughts, prayers and encouragment...it is a lifeline for us!!

Matt