My CF Son

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

2009-11-15T20:07:00.002-07:00

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!

2009-10-12T07:06:00.002-07:00

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

2009-08-15T11:48:00.006-07:00

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

2009-07-29T12:42:00.003-07:00

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!!

2009-07-19T21:09:00.005-07:00

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!!!

2009-07-08T08:14:00.005-07:00

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

2009-07-03T21:14:00.011-07:00

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

Back in the Hospital

2009-06-30T23:07:00.005-07:00

Mackenzie was admitted back into the hospital following his CF appointment today. His lung function was close to 40% and he was sporting a fever and coughing up the green stuff. We have a bronchoscopy scheduled for 9:00am tomorrow (Wednesday) morning along with the insertion a PICC IV line.

Amy

Home from Surf Camp

2009-06-30T06:09:00.012-07:00

We are now officially home from the 1st RecFX Surf Camp of 2009. The camp was awesome and Mackenzie did extremely well until he woke up congested with a fever on Sunday morning. He has a CF doctor appointment scheduled for 3:00pm today. I'm leaving for a long day at work and I've asked Matt to give an update of Mackenzie's condition a bit later.

Here are a few of the pictures from camp:

Hannah Gabrielle & her friend Hannah Esther. The Hannahs have been dear friends since they were little girls at the same church in Portland, Oregon.

This is my surfer dude husband and his favorite surfboard. When this surfboard is not hitting the waves it is proudly displayed as art on the wall at home.

Grace & one of Hannah Esther's brothers, Caleb. Hannah & Caleb are part of the coolest family you could ever meet. Surf camp wouldn't be the same without them!

Our Hannah has always loved the ocean and is especially fond of the sea creatures. We were vey blessed this week with a negative low tide which brought out some amazing tide pools. Hannah was out scouting every morning and located some giant sea hares, cute starfish, and pictured here is her favorite octopus.

Mackenzie had a great time and got a lot of vitamin D from the sun.

Our family picture on the last night. Grace isn't one for always matching her clothes. . .

The kids and our surf camp staff. They had an awesome time and worked really hard.

Mackenzie and his cousins, DJ & Jordan. The boys were a great addition to camp & we were sad when they went back to Oregon. Their dad is my little brother Andrew and he is serving in the US Army in Iraq on his 2nd tour. Thanks, Andy! We miss you.

Hannah & Mackenzie are always acting goofy for the camera.

What a great picture of Mackenzie. He was always a joy to be around and I am soooo glad he went. Mackenzie, thanks for being such an inspiration and an incredible young man. I love you. Mom

Surf Camp, Here We Come!

2009-06-20T18:44:00.002-07:00

We were reminded yesterday at CF Clinic of how important it is to take advantage of those "once in a lifetime" family moments. The sad reality is that Mackenzie is going to be sick whether he stays home or goes to surf camp. These last few days as we pondered whether or not Mackenzie should go, we changed our minds about 50 times and finally made a decision and told Mackenzie to go ahead and start packing. This will be our "last" family vacation before Hannah leaves for college in Flagstaff this August.

Mackenzie knows he could fly him home if the camping gets to be too much & I take comfort in the knowledge that if the docs need to change his antiobiotics (currently Cipro 750mg twice a day) they can call in a prescription to the closest Target in Orange County. The tents we have are 7 1/2 feet tall & Mackenzie's IV pole for the feeding tube fits nicely in the tent. We have two Honda quiet generators which will keep the old Kangaroo Pump running. He can't stand the Vest and uses the flutter which doesn't require electricity. As far as keeping the sand out of everything, we keep everything in plastic tubs and I bought about a million Clorox wipes & baby wipes. I'm still a bit overprotective. What can I say?

We leave here at 5:30am and Camp Pendleton, here we come! Now, it's time for me to pack.

The Clinic Visit

2009-06-19T19:45:00.002-07:00

Mackenzie rocked in the weight department today. He weighs a whopping 126 pounds. Amazing. He has been faithful in his night feeds and insulin injections and the doctor sang his praises. Yeah!

His FEV1 stunk with 51% lung capacity. We got a good sputum sample so by Monday we should know what he is growing. The doc thought that although he's sick, he doesn't need to be hospitalized (at this time).

We still haven't made a decision about Surf Camp. We will decide by morning. The good news is that we do have respite care all lined up for Mackenzie if he stays home.

Friday is Decision Day

2009-06-17T14:59:00.004-07:00

Mackenzie has an appointment with one of his CF doctors at 1:40pm this Friday to determine if a.) he gets to go to surf camp b.) he needs to stay home & I will stay home too or c.) he gets admitted to the hospital for IV antibiotics.

A few notes about Surf Camp:
For the last 5 years we've operated a non-profit Surf Camp in the San Diego area, which is kind of ironic because we live in the Arizona (lots of sand but no water). This is our 3rd year camping on the sand at Church's famous surf site and it's a really cool location. We designed the surf camp to have 2 different parts: 1.) the campers who arrive with their youth groups from all over the place and this year it includes Arizona, Oregon, and Canada and 2.) the friends and family village designed for people in ministry who need to get away and some other folks who just plain need a vacation. We provide the tents, the food, music, and sunscreen. We like to look at Surf Camp as going on our family vacation and taking along a lot of friends.

Hospitals Stays Over The Years

2009-06-17T06:44:00.005-07:00

I wrote the other day of Mackenzie's love for the hospital which is pretty amazing because he's stayed there way over 500 days. I, however, quietly sigh and cringe when I think of all the time I've attempted to sleep on those miserable chairs that magically turn into beds.

But as I look back at all the times we've packed for the 2 week minimum stay at so many different Children's Hospitals (Seattle, Portland, Orange County, Phoenix), there has been one constant- Mackenzie has never cried about being hospitalized. Not even once. I can attribute his love for the hospital to several things like the food, tv, video games, toys, and the "all you can drink juice and sugar cereal" he receives there. But I know it's because the hospitals have worked hard to earn and maintain his trust and he is secure in the knowledge that they will do their best to make him feel better.

Matt & I set some ground rules for Mackenzie when was a baby: 1.) He had to be respectful to everyone at the hospital, even to the nurses he thought pampered him way too much. 2.) He didn't have a say in what treatment he received but he could have a voice in the small things like what side he had CPT on first. 3.) He had to leave the hospital with a good attitude and be respectful to his parents and sisters. Surprisingly, we have had the most trouble with this one. There was a time we caught him calling food service from home and telling them how much he missed their cooking.

Here a few pictures of Mackenzie from some hospital stays over the years. He sure was a cute kid. Well, he still is.

Tuesday PM Update

2009-06-16T21:10:00.002-07:00

Mackenzie is about the same as yesterday which is a good thing because it means he's not worse and there's a good chance the antibiotics are working.

Letter to My Son

2009-06-15T08:15:00.008-07:00

Dear Mackenzie,
It breaks my heart to see you feeling so miserable today with your sinuses so inflammed and your right eye so irritated. I know how hard you have tried these last few weeks to take all your medications and every night feed and keep your attitude mostly positive. It didn't even bother me one little bit when you accidently fed the carpet with Peptamen 1.5 when your feeding tube became detached. Seriously, no worries. . . I know we are supposed to leave for Surf Camp in a week and I know how much you love to soak up the sun with a gatorade in one hand and a book in the other. I've seen laughter in your eyes when you win in volleysquare and contentment on your face when when you finish a big plate of mashed potatoes, corn, and grilled chicken.

This year, your cousins are coming from Oregon and I've been imaging how much fun your reunion could be. Mackenzie, with all that said, I know how miserable you are today and I am absolutely torn up inside at the thought of checking you into the hospital for another round of IV antibiotics if this infection manages to overpower the current treatment. You've spent 50 days so far this year in the hospital and I've been praying the next stay wouldn't be until 2010.

When you told your dad this morning you think IV's might be necessary and you are at peace with going to the hospital instead of to Surf Camp, I wanted to hug you to tell the world of your remarkable courage (where's my Kleenex?). I take comfort knowing that you honestly like the hospital. I think it's kind of neat that you compare my cooking to that of the hospital food service because I know they make a terrific chicken salad. And I know you don't mind the thought of having a TV, computer, and wii in your room while there. It's just that Surf Camp is our family vacation- something we have done together over the years. And the thought of you not being there as we pose for a group picture with the setting sun is just plain sad.

So, as much as I am willing the oral antibiotics you are taking right now to magically work, I must admit my maternal intuition isn't so optimistic. In the next few days we will know the direction your health is taking and will make some decisions as to whether you go to Surf Camp or the hospital. Either way, I just want you to know how absolutely proud I am of you. As much as I would like to stomp on CF and erase it from my vocabulary and plan a family vacation like regular folks do, I LOVE YOU and I wouldn't trade You for anything in the whole world.
Love,
Mom

Hey, Wait...it's WAY Past Time for an Up-Date on Kenz!!

2009-06-15T06:34:00.007-07:00

Boy is it Time for Some Current Info!

Well, we are sorry for not updating things lately. After we got Kenz home and off of IV’s we kind of fell into a routine which is actually a good thing in that nothing bad was happening and that we experienced some normalicy. Not that we don't have things to update, but it has been quite mundane for a few weeks...really. But unfortunately the blog rest is over!

We really do have some tangible updates now and unfortunately they are not that encouraging at this point. I had to take both Kenz AND Hannah to the ER on Saturday night after Hannah had experienced many irregualar heartbeats and some arm pain throughout the day while at work and later at home. Hannah was diagnosed earlier this year with Ehlers-Danlos Syndrom earlier this year after being suspected of it for a number of years. This means basically that the elastic tissues in her body don't contract as quickly or strongly as normal (among other things) and in her case can possibly affect some aspects of her heart. So we watch it carefully and she is being treated by a cardiologist. We were just being careful and checking. She is ok but was very dehydrated which can cause some of her symptoms as well. We call the cardiologist for an Echocardiogram this morning!

Kenz, on the other hand, has been showing signs of infection over the past week or so. This is concerning not just because it is but because we are all scheduled to head out to our RecFX Foundation Surf Camps that we operate in San Onofre, CA during the summer and if he is sick he obviously can't go and most likely Amy as well. Considering that she plans and directs all the kitchen stuff and meals this creates some challenges...which we will deal with but still are concerned. So the infections stuff he showed were lot's of green stuff coughed up, blown out his nose and even green goo coming out of the inside corner of his right eye. Oh...and he felt terrible!

Results of XRays and a CT scan show his sinuses are fully irritated and swollen indicating possibly a full blown sinusitus infection that will also go to his lungs if not stopped. They started him on oral antibiotics...again. :-( The eye thingy is...ready...ready...drum roll...PINK EYE!!!! Apparently whatever virus is attacking him in his sinuses is also infecting his right eye in the form of Pink Eye! EEWWWEEEE!! He is now taking special eye drops.

Bottom line is that we don't know what to expect this week or how this will all play out. :-( But we will keep out chins up and face it like we have always done and do what is required to be done. So please pray for Kenz and beating back these new infections. He is just totally miserable.

We will update more later today as we know more. Thanks all!

Matt

From the Early Mind of Mackenzie

2009-05-28T09:52:00.006-07:00

It seemed like a good day to share some of Mackenzie's early work. A few years ago, I started scanning the kids' art & schoolwork but I'm still just a fraction of the way through the boxes. Mackenzie has always had a creative mind and here's proof: Self-portrait of Mackenzie at school

Mackenzie's self-portait as he might appear in Star Wars.

Mackenzie's actual self-portrait

Looks like a horse.

Self-Portrait

The elephant has always been Mackenzie's favorite

He loved to draw horses

A poster for his Hamlet play

Brachiosaurus

T. Rex

Mackenzie's thoughts regarding his family

A Soldier & his horse

Adventures in the Pulmonology Clinic & Other Oddities!

2009-05-26T22:32:00.008-07:00

Today was a CF Pulmonology Clinic day for Kenz. He was escorted by his Augee grandparents and his amazingly bald dad (me)! Clinic is usually a parade of various caregivers from the CF team asking pretty much the same questions over and over and today was no different. But the fact is that we REALLY appreciate these people, their dedication, passion and sacrifice in the effort to 1) find a cure and , 2) provide the best possible quality of life for the 130 so CF patients that they serve. They are true heroes and friends! Thanks everyone!

Clinic was somewhat frustrating in that I believe Kenz is intentionally tanking his lung function tests lately. Today he started at around 46% and after two Albuterol puffs he moved up to the upper 50's %. :-( He should and has consistently hit the 68% to 74% level but has not come close in the past few months. Kenz insists he is doing his best and we want so desperately to believe him but feel he is trying to make a point and have some control over his health status. Needless to say we absolutely disagree with him on this and hope and pray that his lung function status will move back up to were it has been.

No major changes in care or meds today which is nice, but the issue of compliance in taking ALL meds as prescribed came up again and was met by arguments by Kenz justifying his choices. This is very difficult and painful since we love him dearly and want to see him as healthy as possible and because of the accountability we have to take the best possible care of him. We really need some help in this area so would really appreciate your prayers for this challenge.

But overall, his report today was good and we will continue on the course that we are on and go back to clinic in two months for another check-up.

Another really cool milestone today was that Kenz weighed in at a whopping 120 lbs for the first time EVER!!!! He joked that he was now fat for the first time in his life!! This is such a huge thing when you have a kid who can't gain weight easily and needs it on to help battle his disease so this was a big time encouragement that we all really needed!

The Augee grandparents flew back to Oregon tonight after a wonderful 8 day visit and will be really missed by all of us!

Hey, if any of you have any stories or words of encouragement we encourage you to write on this blog and join the conversation! The more the better!

We will check in later...so thanks for reading this update and for visiting this blog. You all are awesome!!

Matt for the Kenz and the family

PS The pic above is from last summer at our RecFX Surf Camps in San Onofre, CA. He struggles there but is always a real trooper and is starting to really enjoy it a lot more! :-)

CHECKLIST: 1) Spend Great Quality & Quantity Time w/ Family, 2) Update Kenz's Blog

2009-05-25T07:53:00.011-07:00

Matt here. It's been a few days without updates but not without material and happenings to update. Graduation season is upon us and that means lots of time demands, events, parties, family in town and all that good stuff! Our oldest daughter, Hannah, graduated from Corona del Sol High School in Tempe, Arizona on Thursday, May 21st and it was a really awesome affair regardless of the rare rain that hit the Valley of the Sun that night during the name calling portion of the ceremony. Uh...not "name calling" as in negative, but as in the students names called to receive their well earned high school Diploma. It was especially special with all the grandparents in town from Oregon and that Mackenzie was able to be there as well. We are all very proud of Hannah and her accomplishments!!

Kenz has been up and down the past week or so. He is often very tired and sleeps a lot but seems to be slowly making progress towards a more stable health. When he is feeling good he is being active with the family or friends which is great for him and really fun for us to see him doing.

One of our biggest challenges right now is keeping all of his meds and medical materials organized, and with so much stuff it is very time consuming. The other challenge is the sneaky way Kenz is non compliant with certain meds at times. He is 17 and thinks more and more that he is ready to deal with his disease on his own, but there is still a lot of learning and habit changing that has to happen before he is ready and able. At times he shows himself very ready to take the lead on his own care, but that is often followed by some serious lapses. We ask him if he understands how that can be very detrimental to him and he still finds it preferred to deny or argue his point. But we are all working through it together and I am very confident that in time he will be able to take the lead in this area. Even with the compliance struggles we are so very proud of him in so many ways! He is an awesome son and brother!! :-)

Amy & I had a very nice surprise yesterday when a neighbor couple from a few streets away knocked at the door to introduce themselves. Turns out they too have a son with CF who is 10 years old. Actually meeting other parents who deal with the very same stuff as us is really encouraging in a strange way. The reason is that CF patients can't come into knowing contact with each other because of such high bacteria transfer risks. So CF patients and families regularly feel they ARE VERY isolated and alone in the battle. So it is very helpful and encouraging to meet other CF parents if just as a reminder that we are not alone and not the only ones on the planet dealing with this terrible disease. We look forward to getting to know this couple better and comparing treatment techniques and how we all cope with the challenges of CF. :-)

Well all...a very happy and refreshing Memorial Day for you and your families! We really appreciate all of you who regularly read this blog as we try our best to translate the feelings, thoughts and happenings related to our son with Cystic Fibrosis. We thank you for your prayers for Mackenzie and his stability and even healing. You all are awesome!!!

Matt on behalf of our whole family

Finally a Birthday Party

2009-05-17T20:22:00.010-07:00

Mackenzie finally had his birthday party and it was only a month late due to his lengthy hospital stay. And WOW, was it a party! Matt, for all of the time he spends planning surf camps, can now add birthday party planner to his list of ever-expanding job titles. Since I pretty much worked all day Friday (12 hours), by the time I got home from work Matt had cleaned the house, baked a cake, grilled the meat, and arranged the watermelon, beans, chips, & soda in a display I'm certain Martha Stewart could truly appreciate. Go Matt! Mackenzie, along with his dozen cohorts, Dad, & Sister Hannah all went to see the 10:15pm showing of Star Trek and loved it! The guys (high school sophomores) stayed up until 3:00am playing the game of Life and Mackenzie is still laughing at Philip who kept his "wife" in the backseat throughout the entire game while he drove. They all had a great time and I was completely amazed when I found the house clean the next morning. Mackenzie ended up sleeping all of Saturday in an effort to recuperate from the party. It was so worth it just to see him have the time of his life. Happy 17th, Mackenzie!

Now, if the house can stay clean until the grandparents arrive from out of state for Hannah's graduation this Thursday. Go Hannah!

A Sunny Morning

2009-05-13T10:30:00.004-07:00

It's a beautiful sunny day here without so much as a cloud in the sky. The herb garden the kids gave me for Mother's Day is starting to grow. I'm particularly enjoying the aroma of fresh basil and oregano. Matt's surfboard counter (his creation) is ready for the teenagers who will be dining at it all summer. The neighborhood hummingbirds are enjoying the fresh sugar water and Matt's mist system has been tested and is ready to keep us cool in the upcoming 100+ degree weather.

Sunny Mr. Mackenzie had a great week. His blood sugars have stayed within an acceptable range, with the help of the long lasting insulin, Lantus. The nightfeeds are well tolerated (10:30pm to 5:00am) and Mackenzie has been quite agreeable (now, if only his new insurance company would be so kind as to cover the formula). Overall, I would say Mackenzie feels pretty good, with the exception of an ongoing sinus headache.

Mackenize gets to finally have his birthday party this Friday night. Yeah!

Uhumm!! Attention...We are Clear!!!

2009-05-08T20:30:00.008-07:00

After patiently waiting until Wednesday, Kenz is now fully "unhooked", "de-accessed", "free of tubes" or whatever you want to call it, but the bottom line is that he no longer is getting IV antibiotics!!!! We are now able to claim at least some measure of success in battling these various bacterias over the past month. We are hoping that the doctors have learned enough about his specific issues to be able to better treat him day to day and for the future.

Of course it was especially nice for the family (including the dogs) that Kenz got to finally take a full and complete shower!!!! No more complaints from the neighbors or gas masks for us at home! He now smells great!! :-)

Kenz really enjoyed helping the nurse remove his IV Picc Line. He actually video taped it and is threatening to post it to the blog here. If you would like to see the video clip please comment on the blog and we will see what the consensus is. It is pretty cool in that it is about 3 feet long and went way up his arm, across his chest and down by his heart. Amazing technology!

So now we are starting on the path to some hopeful health stability for him and adjusting to the new changes in his medications and therapies. It is a whole lot of stuff going into his body and it takes its toll. With some of the changes he will hopefully sleep more each night. Last night Kenz finally got an amazing 9 hours of good sleep, which is about the amount he has collectively gotten over a 3 night period the last month. He is gaining weight again and enjoying so much more energy.

We really want to thank all of you who have been amazing prayer warriors for Kenz. You all are such encouragements to us in this battle and with your help and the mercy of God we hope to keep fighting this battle until there is a cure and or when God chooses to cure him. We have asked for his total healing by God practically every day for the past 17 years and even begged God to let us take his place at times...but we are not discouraged that Kenz is not healed yet. He was given only a few short years to live and now as a 17 year old he is a true testimony to Gods mercy and grace in our lives and in his own life. So we see God at work in and through all of this and we find peace in that knowledge and in that knowledge a whole bunch of blessings!

You can be praying for us as we go through the process and the decisions of how Kenz will finish high school and all the classes that are still needed. There are many options with some better than others, but the constant unknown will be how he will be in his health status from day to day, week to week and month to month. And part of that is how well he does in assuming the role of decision maker in his life in the near future.

Anyway, those are my thoughts for the day and they are full of hope, love and total happiness to have Kenz home and with us!! Blessings to you all as well!

Matt

Great News!

2009-05-05T13:04:00.005-07:00

The doctor appointments went amazingly well. Mackenzie has reached 118 pounds. Yeah! His lung function test (FEV1) was 68% lung capacity. His is still on the Lantus but the dosage has been reduced a bit.

Overall, it was a very encouraging appointment.
More details later.

Thanks for the prayers,

Dr. Appointments Today

2009-05-05T06:01:00.004-07:00

Mackenzie has 2 appointments today at Phoenix Children's Hospital. The first one is at 9:00 with the endocrinology team. I'm fairly certain we will have a discussion as to the likelihood of Mackenzie switching from the 24 hour insulin (Lantus) to an insulin pump (insurance probably will be the deciding factor).

The second one is at 10:00 with the CF pulmonary team. The main item to discuss is whether or not to continue the IV antibiotics. Hopefully the lung function test results will be mightily improved from last week.

Side Note: Kudos to Matt's awesome job overseeing Mackenzie's IV's, feeding tube, and meds during these last few days. Great job, my Surfer Dude!

Breakfast Together

2009-05-03T09:34:00.010-07:00

One of my wishes during this last month was for the family to be able to have a meal together at the kitchen table. Guess what? We had breakfast outside on the patio this morning. Amazing! As soon as Mackenzie's 5:00am IV medication was completed, I quickly made coffee and then compiled a grand breakfast (biscuits, sausage w/ IKEA gravy & orange juice) and at 7:15am, we all sat at the same place at the same time. Even though Mackenzie was too nauseous to eat, he was remarkably content to just sit and soak in the fun. I had intended to take a family picture but laughter (thank you, Grace) got the best of all of us and the next thing I knew, the dishes had been cleared away and Matt was starting the 2nd IV of the day.

SuperMen

2009-05-02T07:15:00.006-07:00

Things are going well at home these last few days. Mackenzie is taking the initiative with his blood sugars by checking levels, giving his own injections, and starting to recognize when he his sugars are high and low. The night feeds are going great and Mackenzie has gained 4 pounds in the last week. He's enjoying "hanging out" with the sisters, and is looking forward to seeing some movie about wolverines.

Matt is doing a stellar job managing the house and being in charge of Mackenzie's IV's as I am working full time these days. Matt is keeping the laundry and dishes done & he has branched out in the kitchen and has added steamed & grilled veggies to his ever-expanding list of specialties. Today's mission for him is an Excel spreadsheet organizing all of the medication doses.

I love the fact that even though I wish I could be at home all the time, I love being at peace when I go to work knowing things are under control at home.

I'm so thankful for all the support and encouragement.

He's Home!!!!!!

2009-04-30T21:07:00.010-07:00

What an awesome thing it is to have the whole family in the same place at the same time! We are super excited to have Mackenzie home again with us. He will have home IV antibiotics for at least another week (1 every 6 hrs and the other every 12) and hopefully the CF doctors will find great improvement when they see him again next week.

Mackenzie's Follow Up Appointments:
Primary Care Physician: in 3-5 days
Pulmonology (CF): on May 5th
Endocrinology: in 2 weeks
ENT: in 1 week

Mackenzie's Current Medications:
(as listed on his discharge summary)
Lantus
Ranitidine (Zantac)
Xopenex
Ultrase Enzymes
Dornase
Duloxetine
Nystastin
Ent-Sol
Pantoprazole
Claritin
Sucralfate
Singulair
7% nasal saline
Flovent
Formoterol
Azithromycin
Mometasone
Intraconazole
Urosodiol
O2
Pepatmen 1.5
Colistimethane
Primaxin
Calcium carbonnate
Zofran
Tramadol
Nasal Spray
Flonase

Gotta go get the night feed started,

Home on Thursday

2009-04-29T12:15:00.004-07:00

Mackenzie's lung function test wasn't so great, but that's mostly due to his lack of effort. The test will be repeated in a few hours.

Regardless of the test results, the doctors have agreed to send Mackenzie home tomorrow (Thursday) afternoon after only one month in the hospital. Yeah! He will need to be on IV antibiotics for another week. Matt & I will take turns dispensing the medications. The doses are 6am, noon, midnight, and 6am (one is every 12 and the other every 6). Mackenzie still has a PICC line in his left forearm and the nurses with the health care company will tend to the dressing as it is needed.

We will be continuing with the nightly g-tube feedings (4 cans of 1.5 Peptamen) as well as the long lasting insulin, Lantis. I'll list the meds later but I'm sure it will be an armload from the Target pharmacy. Mackenzie's former chest physiotherapy method wasn't really working so we will need to research the options. Maybe a vest?

Hannah returned home safely from Washington D.C. She had a wonderful time and brought home several stories and pictures. She is proud of the nap she took under a tree at Mt. Vernon and the amphitheatre she stumbled upon at Arlington Cemetery. I know Hannah was glad to see us but I'm certain she left a piece of her heart in Washington.

Grace has recovered (finally) from the sinus infection & root canal surgery. She seems to have attracted every spider in the neighborhood as she has been bitten repeatedly during the past week. Grace & Matt had a scare at the doctor's office today when a man was attacked outside the front door by a swarm of bees. Matt noticed the incident and was quickly able to summon help from the fire department to give the man assistance. Men in beekeeper suits were able to move our truck and clear a path for Matt & Grace to escape. I'm so thankful they were kept safe from the bees.

I'm so thankful for the many thoughts and prayers for Mackenzie and our family. Please continue to pray for healing, for Mackenzie's compliance with all the treatments, and for laughter to return to the Augee House.

"Wondrous is the strength of cheerfulness, and its power of endurance - the cheerful man will do more in the same time, will do it better, will preserve it longer, than the sad or sullen” Thomas Carlyle

Thanks,

Friday?

2009-04-28T10:55:00.004-07:00

Mackenzie's lung function test will be repeated on Wednesday. It the results are decent, we get to bring Mackenzie HOME and most likely by Friday. I am hoping, hoping, hoping, the results are improved from last week because (among other things) I just want to fix a big meal and have the family sit down together. It's been so long.

Mackenzie's Classic School Project

2009-04-26T10:58:00.007-07:00

This oldie but goodie is from a few years back. Mackenzie wrote, starred, directed, and produced this report on William of Normandy all by himself. Way to go, Mackenzie! It makes me laugh every time I watch it even though it is totally not a comedy. I know because you remind me. Still. It's priceless.

The Weekend Belonging to Our Family

2009-04-25T18:10:00.022-07:00

Mackenzie:
Still hospitalized. On Day 2 of consistent night feeds (only 26 more days to make it a habit) and doing a swell job of ignoring the steady nausea that comes along with the formula. The docs will be starting him on Lantis long lasting insulin tomorrow. Mackenzie was mightily encouraged yesterday when his youth pastor & two stellar friends paid him a visit (thanks, guys).

Matt:
Imagine my surprise when I walked through the front door after a really long day at work and found my handsome manly bald guitar waiving surfer husband baking a CAKE for Grace's 15th birthday party. The "dude" claimed to have been culinarily inspired after watching a contest on the Food Network where some guy in a tall hat baked a 7 ft. cake equipped with pyrotechnics. With his rectangle masterpiece of a cake successfully completed, the once unknown pastry decorator in Matt has now been fully awakened (Hallelujah!) and will next try to conquer the world of pastries. Be Warned. He may come knocking on your door begging you to allow him to BAKE your next cake.

Hannah:
Sweet, intelligent, often absentminded, perceptive, joyful Hannah has been enjoying her 7 day whirlwind tour (aka school field trip) of Washington DC. She informed us tonight that her 3 favorite spots in her new favorite city are 1.) The Library of Congress 2.) The Lincoln Memorial 3) The FDR Memorial. Tomorrow morning marks her 2nd day of the national "We the People" competition and hopefully she knows everything there is on the Declaration of Independence. We are super duper proud of her accomplishments and Hannah, you ROCK the HOUSE. . .Special note for parents of young children: BE CAREFUL when you allow your child to excel at a speech & debate class. A successful child rebuttaler can bring untold challenges to the "just because" answers we parents so often give. Trust me. I can't say "because I'm the mom and I say so" anymore. I must be prepared with a full discourse on pretty much everything.

Grace:
Tonight. 15th birthday party. Sleepover. Dad's homemade Green Cake. Candles. Apples to Apples. A Movie. Discussions of Twilight, Boys, & the Mall. Belgian waffles in the Morning. Giggles Everywhere. SLEEP Nowhere.

Me:
Lots of work. Lots of laundry. Lots of coffee. I love my family. I love my job. I love it when I sit down at the end of the day and realize I have brushed by teeth & combed by hair (at least once).

God is good. All the time.

I Really Hate Cystic Fibrosis

2009-04-23T13:16:00.031-07:00

Today.
I love my son so much. My heart is heavy after a meeting Matt & I had with Mackenzie & his CF team this morning. We had to tell our 17 year old young man the "realities" of his health condition and what needs to be done so he can survive. And as he becomes an adult, if he's not fully vested in every facet of his care, the bottom line is he won't survive many more years.

I'll explain it this way. The overall measure of his health is found in a pulmonary test called PFT, notably the FEV1. Mackenzie's test on Wednesday showed he has 66% lung function. This level needs to be quite a bit higher and in order to do that we need to take 4 things into consideration.

1. Nutrition: Mackenzie's BMI (body mass index) should be at 50% (122.6 pounds) but he is at 10%. He needs to gain at least 12 pounds ASAP which means a 4000+ calorie diet including formula fed nightly via his g-tube. Mackenzie has mild to moderate liver disease (non-alcoholic cirrhosis) complicated by 2 esophageal varices. This hospital stay Mackenzie spent 3 days on a liquid diet in order to fix DIOS (distal intestinal obstruction syndrome) which had filled his intestines with mucus and put significant pressure on his appendix. He can hopefully avoid this in the future with a daily dose of Mirilax.

2. Managing CFRD (Cystic Fibrosis Related Diabetes): Until recently, Mackenzie's blood sugar levels were noticeably high only when he was taking corticosteroids. Today, his CFRD is considered significant as evidenced by his poor lung function, the fatty liver, and the yeast found growing in his lungs. Mackenzie will need (for the rest of his life) constant monitoring of his blood sugar levels and insulin to correct the levels so they can remain close to "normal". He will take oral Nystatin for a long time to combat the growing yeast. The hope is that once the blood sugars are normalized Mackenzie will gain weight and have better lung function and be able ward off any further damage to the liver & kidneys. In addition to figuring out the insulin dosage, the doctors will try to get the correct levels of Mackenzie's enzymes, Zantac, Protonix, Ursodiol, Carafate, and a few other medications.

3. Pulmonary: Mackenzie already takes a ton of medications for battling his lung disease (Pulmozyme, Tobi, Foradil, Xopenex, Flovent, Hypertonic Saline Solution, Claritin,Singulair, and oxygen at night). The docs stressed how inter-related everything is (like the DIOS pushing up the colon causing increased pressure on the lungs) and once the nutritional & CFRD needs are addressed, the lung function will steadily improve. The chronic sinus problems Mackenzie has are something he just has to live with and aside from Nasonex, saline washes, & a surgery about every year, there's not a lot more we can do to give him relief.

4. Adherence: This is probably the toughest part of Mackenzie's care. He is an intelligent, articulate, strong-willed young man who wants desperately to be "normal" and play football, hang out at the mall, and go to the movies. Frankly, he's tired and resentful of Cystic Fibrosis. I would be. I am. It's heartbreaking to know how much pain and suffering my courageous son endures daily and not be able to "cure" him. Please pray for Mackenzie as he is really struggling with the overall commitment he needs to bring to the table in order to survive. Especially. Right. Now. Poor adherence to his entire health care will mean no Transplant when the time comes. We know what no transplant means. Please pray for Mackenzie as he sits in his hospital room in isolation and pictures this long road ahead of him while he watches the world go by. Alone.

Mackenzie has at least one more week in the hospital making his stay at Phoenix Children's over a month long. His need for strong IV antibiotics continues in order to combat a particular nasty bacteria found in the lungs.

Please pray
For Healing.
For Patience.
For Comfort.
For Peace.

The Lord's lovingkindnesses indeed never cease,

For His compassions never fail.

They are new every morning;

Great is Your faithfulness.

Lamentations 3:22-23 NASB

Patience

2009-04-21T06:44:00.007-07:00

We are looking towards this Wednesday when Mackenzie will have another lung function test at Children's Hospital. If the test goes amazingly well, we will look to bring him home later this week & complete our current stay of three weeks. If the improvement isn't yet what we anticipate, then we will add another week at Phoenix Children's.

Mackenzie has spent nearly as much time (January & April) at Children's Hospital in 2009 as he has at home. It's a tough thing when he is 15.4 miles from our house.

While we pray for patience, Mackenzie is still receiving 2 IV antibiotics (Colistin & Primaxin), at least 15 other medications, daily insulin injections, and his favorite activity which is chatting with the respiratory therapists while they "pound" on his back. I can tell he still feels awful and I suspect it's due in part to the medications.

Yesterday was Grace's birthday. We celebrated with Mackenzie at the hospital. It was a special time seeing the kids laugh together.

Grace's Birthday

Hannah tried to make it a "surprise birthday party" but Grace already knew.

Mackenzie was in great need of a shower

Can we take a serious picture? Part 1

Can we take a serious picture? Part 2

Can we take a serious picture? Part 3

Friday Evening

2009-04-17T20:13:00.004-07:00

Mackenzie is now on Week 3 of this hospital stay. Yesterday, the doctors changed one antibiotic to IV Colistin (he still takes IV Primaxin) to combat an obscure bacteria found in last Friday's bronchoscopy sample.

Kenzie's attitude is remarkable and he is pretty much (in our opinion) awesome. He is working hard to gain weight & constantly monitor his blood sugar & take insulin to correct his sugar levels. He gets chest physiotherapy every 4 hours & receives several medications via the nebulizer. The hospital is letting him keep a wii in his room (golf is his favorite game) & he keeps ESPN on the television. He is in strict isolation so the only time he can leave his room is when he goes for a test or surgery.

Last night, Mackenzie's mood was brightened when he received some surprise visitors from high school (Thanks, Hannah, Clay, & Taylor). He has been able to keep up with schooling (Thanks, Mrs. Reed) because his homebound teacher brings his work to him at the hospital.

Mackenzie is scheduled for a lung function test next week and the results will give us a better idea if the new antibiotic is working.

Grace has a birthday on Monday & Hannah leaves for Washington DC on Wednesday.

Eating Again

2009-04-15T18:21:00.005-07:00

The x-rays this afternoon indicate Mackenzie's appendix is less swollen & the intestines are in much better shape after a three day GI procedure consisting of "liquids only". Mackenzie was given the "all clear" sign from the doctors to go ahead and resume his meat & veggies diet.

It appears the insulin will be started on Thursday. Mackenzie has a condition called "CFRD" (Cystic Fibrosis Related Diabetes) and will once again be needing constant monitoring and insulin.

We are still awaiting the name of the elusive bacteria found in the sample taken from Mackenzie's lungs.

Tomorrow marks day 14 of this hospital stay. Mackenzie has become a favorite among respiratory therapists, which is a great thing because he sees them every 4 hours.

Thank you for the continued prayers and encouragement. We are so thankful for all the support (Thanks, small group for the meals).

Jeremiah 16:19

God, my strength, my stronghold,
my safe retreat when trouble descends

Update

2009-04-14T13:53:00.007-07:00

Mackenzie is in the midst of a GI procedure in order to reduce the amount of mucus in his intestines, which have been causing the appendix to swell for some time now. Hopefully, all will be better by tomorrow so he can quickly resume his normal carnivore status.

The endocrinologist is anxious to start him on insulin for his CFRD (CF related diabetes). She also said the liver biopsy indicated some liver disease.

The CF doctor indicated we are about halfway through the course of IV antiobiotics. We know he is growing pseudomonas & a fungus in his lungs.

Thanks for the continued prayers.

Monday Update

2009-04-13T13:36:00.003-07:00

We are still awaiting the results from the biopsies taken last Friday. In the meantime, the doctors have Mackenzie on a clear liquid diet, an IV drip, & medicine through his feeding tube to get his intestinal tract cleaned out & functioning well again. This process could take up to 5 days . . Another concern which will need some attention is Mackenzie's blood sugars. Last night, they were close to 300 before dinner as well as after.

He has quite an amazing view from his 5th floor hospital room of downtown Phoenix. It's been fun to watch the planes take off and land at Sky Harbor Airport and the retractable roof open and close at Chase Field (go D-Backs).

Mackenzie had an awesome birthday and is truly thankful for all of the attention he received.

Thanks,
Amy

More Birthday Photos

2009-04-12T15:53:00.000-07:00

Easter in the Hospital...Different but Just Fine with Us!!

2009-04-12T14:44:00.011-07:00

Every once in a while a unique day comes along that combines two or more specific focuses that turn it into a really great memory. Well we are having one of those days today. First of all it is obviously Easter Sunday and a very important day of celebration indeed. And secondly, it is also Mackenzie's 17th birthday today!!! What is interesting is that in both cases the odds were absolutely beaten. What I mean by this is that Jesus defied all logic, laws, culture, expectations and pretty much all laws of physics that have ever been or could have been in so many ways, but especially in His death on the cross and His resurrection three days later. Probably the single most important combo of events in history. The other big event, Kenz's 17th birthday, also clearly defied the odds that we were given for him. Considering we were told he would not live long enough to go to kindergarten and the fact that he is now 17 and finishing his sophomore year in high school, he has clearly beaten the odds...and he continues to do so every single day that goes by. We could not be more thrilled and proud! What a privilege for us to celebrate two hugely important events in history!!

Today we are spending the afternoon up at Phoenix Children's Hospital with Kenz in his nice and small private isolation room of about 12'x12'. The whole fam is here and we brought the fixin's! Amy cooked a red foil ham, scalloped potatoes, steamed broccoli, green beans and french bread with garlic! Sounds good, huh!?? After stuffing ourselves we did more stuffing with a special 1/4 sheet birthday cake, followed by crazy games of Charades and The T-Shirt Game (kind of like Apples to Apples). Now as I write this everyone is either taking a nap or stuffing their faces again with another plate of food (Gracie!). It is a great day for a party here!

Kenz looks really good today and it appears the therapies are really working and the surgeries are having their effect. I hopefully he will be able to come home in the next week or two. It is just really nice to have the family all together and spending fun time together. Above are a few pics of today's fun. Happy Easter everyone!!

View from Mackenzie's Room

2009-04-11T18:48:00.006-07:00

Mackenzie took this picture from his hospital room on a rare rainy Arizona morning. He has a lovely view of the parking garage and the steel girders used to build the Phoenix Childrens Hospital's new 12 story tower. Mackenzie has enjoyed watching the progress and is looking forward to its completion (all private rooms).

With yesterday's surgeries behind us, today has been a rest and recovery day for us. Tomorrow is not only Easter, but Kenz's 17th Birthday as well!! So the whole family will be spending the afternoon with Mackenzie at the hospital celebrating both events. If you have a moment please e-mail him a birthday greeting (matt@recfx.com) or leave one at Mackenzie's Facebook page. He would really appreciate it and enjoy hearing from everyone. Thanks.

We are looking ahead to next week when we will find out the lab results from the procedures. Please pray for wisdom for the doctors as they decide the best plan of action for his his continued health care.

Amy

Back in the Room

2009-04-10T16:30:00.003-07:00

The procedures are all completed and Mackenzie did quite well. The pulmonologist said there was lots of infection and it's no wonder that he feels so sick. The GI doc said the varices aren't any worse than in January so there's no further cause for alarm at this time. The doc performing the biopsy said he tolerated the procedure well. Mackenzie must be careful for some time until his body recovers. He is still quite groggy but should be up and about soon.

Matt is camping out at the hospital while I work tonight and Saturday.
Soon,
Amy

Waiting

2009-04-10T13:08:00.003-07:00

We are waiting for 3 different doctors to get their testing completed. The anestethiologist is aware of his history of allergic reactions and we are anticipating & praying for all of the vitals to stay stabilized.

We will update soon,
Amy

Prayer Request

2009-04-10T12:45:00.003-07:00

Mackenzie is waiting in pre-op for surgery. The doctors will be performing a bronchoscopy (lungs), a biopsy (liver), and an EGD w/ possible banding (esophagus varices). Mackenzie had a CT scan yesterday which brought to light some other areas of concern including the appendix.

We appreciate your continued prayers,
Amy & Matt

More Tests

2009-04-09T12:35:00.003-07:00

Mackenzie had another restless night at the hospital and is still quite the bear. His next few days will be spent having several complicated tests and procedures performed, including a bronchoscopy.

The surfer dude hubby gets back today from San Diego. I'm certain once he cleans the sand out of his ears he will head straight to Children's for some thrilling chess matches with the cranky teenager.

Mr. Cranky Pants

2009-04-08T16:12:00.008-07:00

Still on the road to improvement. . . The doctor started a new medication, doubled Pulmozyme, and cancelled another. I've heard talk of a bronchoscopy being scheduled in the next few days to target exactly what he is growing in those lungs. Mackenzie managed to sleep a whole hour last night and consequently he's doing an excellent job of acting as Mr. Cranky Pants.

Matt has been away at some "meetings" in San Diego and it's no secret those "meetings" involve surfboards and the ocean. I'm prepared for Matt's return and I'm certain tomorrow he will take over the role of Mr. Cranky Pants.

The girls are much better and Hannah is busy trying to finish sewing her prom dress & memorize our Constitution. Here's a link to the national competition she's busy studying for http://www.azflse.org/azflse/pressreleases/viewpressrelease.cfm?pressid=164

Thanks for the prayers and encouragement,
Amy

Good Morning!

2009-04-07T10:34:00.003-07:00

Mackenzie appears to be showing some much needed improvement. We are awaiting some test results but for now he is receiving the IV antibiotics Primaxin and Amikacin as well as a serious bunch of other meds. One of Mackenzie's favorite things in the hospital (besides the food) is the manual chest physiotherapy (CPT) which is a good thing because the orders are written for every 4 hours.

Mackenzie has started to grow bored in his isolation room especially now that the NCAA basketball tournament is finished. His attitude should pick up today as his Red Sox will finally have their opening day. Just a note, Mackenzie's 17th birthday is Easter Sunday.

Doing Well

2009-04-06T10:37:00.002-07:00

Mackenzie's PICC placement went well. The anesthesiologist used an excellent combo of meds so there was no allergic reaction (unlike last time) and he came through the procedure in great shape. He is still asleep and resting comfortably. Yeah!

I plan to stay until the last minute until I must leave for work. It's Baby & Me for me today at the Swim School.

Amy

2009-04-06T07:54:00.005-07:00

Matt and I are at the hospital with Mackenzie awaiting his surgical procedure (IV PICC line placement) this morning which is scheduled for 9:00am. He's been NPO since midnight and I know he really wants to get this over with so he can eat something because he wasn't able to keep food down yesterday. No matter how old he gets it is still so hard to watch him being carted away for surgery. I remember the very first time he had surgery over 16 years ago and how tiny he was in the littlest hospital gown available. He still has his favorite teddy bear named Hasley but he's managed to ditch both his talking Big Bird and Barney toys.

The girls are both at home on antibiotics with sinus infections. We spent our Sunday morning at Urgent Care. Hannah is desperately trying to regain her voice as she leaves in 2 weeks for Washington DC for her national government competition.

For now,
Amy

Hospital Adventure Day 2

2009-04-04T19:34:00.008-07:00

With Amy and Hannah working all day today it was upon me to do the medical parent responsibilities. The day started out with a quick visit from Dr. Gong (CF Clinic pulmologist) and the primary doctor during Kenz's stay this time. The visit was basically reaffirming what had been discussed last night. So no major changes. He is on two IV antibiotics and an antifungal and physical therapy and pulmonary therapy every 4 hours around the clock. He will be getting his new picc line on Monday morning because his veins won't tolerate direct IV's for more then a couple of days at best. We are woking on sputum samples to get the current bacteria information so we can accurately dial in his medications and therapies. But for now we are doing the broad spectrum shotgun approach.

He looks really good today which is always good but a kind of false positive considering how sick he really is whenever he is sick enough to be in the hospital. But it was still good to watch him happy when talking with nurses and doctors today. He even was very funny at times and caused us all to break into serious laughter at one point with a funny line that shall remain unspoken on this blog, but you can ask him yourself. The dr in the room at the time laughed so hard she had to run out so she did not pee her pants! It was an epic moment in the history of Mackenzie and the hospital!! My stomach still hurts from laughing too! The nurses were amazed at the shear volume of urine that he produced today and frequently commmented on it to his pure joy. I had a really wonderful day with him today as far as hospitals go and look forward to watching him continue to grow up in the area of managing his own health and making good medical decisions. He understands so much but is still a little boy in many ways and yet a young man. It was a good day! Matt

Friday Evening

2009-04-03T20:18:00.004-07:00

Mackenzie is in a room!
It took 7 1/2 hours, but he finally got his isolation room on the 5th floor. Clearly he has a positive attitude and is genuinely looking forward to breathing easier in the upcoming days. He has been doing an excellent job communicating with the doctors and nurses which is a positive step towards being one day responsible for his own care.

Thank you for the continued thoughts and prayers.
Amy

Friday Afternoon

2009-04-03T13:55:00.002-07:00

Mackenzie is being admitted to Phx Children's and will be staying in the ER until an isolation room becomes available. Hopefully soon.

Friday Morning

2009-04-03T08:10:00.003-07:00

Matt and Mackenzie will be leaving in a few minutes for Phoenix Children's ER. Our night was long and we are praying a hospitalization will bring much needed relief. The last stay was for the entire month of January and we hope this one is shorter.

I'm leaving for work as I am scheduled to teach swimming to lots of little babies and their parents.

We will update from the hospital soon.
Amy

Matt's Take on Thursday

2009-04-02T20:42:00.006-07:00

Well, today is Thursday... it felt like we were just treading water and getting nowhere, expecially with Mackenzie. He didn't get better, but he had a few bright moments. He didn't really get worse, but he had a few parts of the day that he really felt worse.

So what does this tell us about how Kenz is doing? His vitals today were a little more shaky and unpredictable and he kept spiking fairly substantial temperatures, required oxygen, and brought up lots of thick mucous. It is so very frustrating to see him go through all of this, heart wrenching in fact, but the reality is that this is all he has ever known and possibly will ever know. I know Kenz tries so very hard and I can't help but hold him in such high respect and esteem for what he has accomplished and the mountains he has scaled under the massive burden of this crappy disease.

In talking to people recently I have found myself answering their constant questions about how Kenz is doing by asking them if they have ever had bronchitis or pneumonia before. Most say yes and usually comment on how painful and debilitating it was for them. That's when I explain to them that what they most likely experienced as their worst IS the daily norm for Kenz on a good day. This seems to be somewhat an overwhelming concept to grasp for any of us, but then to take it one step further and try to picture how he feels on a BAD day. I physically feel that pain when I think about it and I cry, cry knowing that my son is suffering so much 24/7 and yet manages to do the things he does and have the great attitide that he does. Nothing short of a miracle. A MIRACLE!!

So the plan was to take him into the hospital this afternoon or evening and do so through the ER department so that they could leverage an isolation room and bed for him from a hospital that has no available beds. We waited the day out with his vitals and overall well-being on its nasty rollercoaster and set our sites on around 7:00 pm. But before we left I called the hospital and checked on bed status and was told that there "are NO beds" tonight and that we would end up waiting in the ER all night so it would be best to go in on Friday morning. Until then, Amy is staying up with Kenz tonight while I get some much needed sleep.

Matt

Wednesday Update

2009-04-01T10:13:00.003-07:00

There's no improvement with the current course of antibiotics and steroids, and truth be told, Mackenzie is worse than yesterday. Please pray the new meds would become effective.

Matt and I have been invited to attend a Spring Training baseball game this afternoon (Giants v. Dodgers) and Hannah will be watching over Mackenzie while we step out briefly.

Amy

Tuesday Update

2009-03-31T10:39:00.003-07:00

Mackenzie is feeling miserable today & is requiring oxygen. We saw the CF pulmonologist yesterday & she noted Mackenzie's lung function tests were pretty low. In hopes of avoiding a stay at Phoenix Children's, we were sent home with 2 oral antibiotics and 5 days worth of predinsone. Should these meds not help him dramatically improve soon, we will be looking towards a stay in the hospital.

Mackenzie

2009-03-31T08:55:00.005-07:00

Many of you have kept Mackenzie in your thoughts and prayers since the day he was diagnosed with Cystic Fibrosis in August of 1992. He continues to fight his CF daily with over 18 medications, a feeding tube, breathing treatments, oxygen, chest physiotherapy, and frequent hospitalizations for IV antibiotics to treat chronic lung and sinus infections.

Thanks for all of your continued thoughts, prayers, and encouragement for Mackenzie and our family. We have started this blog to keep you updated on Mackenzie's progress as he continues to battle his Cystic Fibrosis.

Amy