Eagle's Med Pak

Eagle has lots of medications that he has to carry everywhere he goes!  In a desperate attempt to get his asthma under control...his medications seem to change montly!  Keeping track of everything and keeping everyone he goes with informed and up to date, tends to get very difficult and his backpack gets really messy and unorganized!  I have searched desperately for a better bag to organize his equipment/meds and have had no luck...so, I found a better way to organize everthing myself!

Eagle is also getting to a point where he is better able to understand the medications he takes and learning when he needs them, so I also wanted to come up with a system that would help him to be more independent and able to help others understand what he needs and when he needs it and I'm happy to say I found a way to get everything I wanted!

I found some extremely useful websites that has great printables!  I found this wonderful Asthma Daily Diary.  Here he will log his peak flow readings in the proper row and it will instantly tell him what color area he is in and he will know just what med pak to get his meds from!  This will also be a great way to keep track of how he's doing and it's a great way to keep track of what meds he is using and when! 

I also found a website where we can print off his current medication list (complete with pictures) and a medication checklist.

Here's how everything ended up! 

I made him a folder to keep in his bag.  His folder contains very important medical information and all of the phone numbers for his pediatrician, lung specialist and allergist!  In his folder I used presentation sheet protectors to not only protect some sheets from getting damaged, but so that we could reuse one of his daily sheets (he will use a dry erase marker).  The first sheet in his folder is his Asthma Action Plan (in a sheet protector).  The next sheet (in a sheet protector) is the list of his current medications (this contains when he takes them, what each medication is used for and also a picture of the medication).  The next sheet is a Weekly Med Checklist.  On this sheet all of his medications are listed, along with the dosage and time it needs to be taken.  Each medication has a checkbox for each day of the week.  He will use a dry erase marker to mark off when he takes each medication.  At the end of the week, I will transfer this info to a monthly record sheet which we can take to his appointments to his lung specialist.  Next he has a few months worth of Daily Asthma Diaries.  This is where he will record his daily peak flows.   There is also a space for daily triggers and symptoms and a place to log any extra medications.  No more guessing how often he needs his relief meds!  These diaries are perfect to take along to his appointments also!  This folder contains a wealth of information and is a great communication tool to help everyone understand what medications he takes, why and when!

Instead of his medications all being thrown in his bag, kept in ziplock bags, etc.....they are all now, neatly organized in boxes which are color coded or labeled! 

He has his allergy emergency kit (his epi pen) that has to be kept with him, due to his rare "cold" allergy, that can easily send him into anaphlactic shock.

He has his peak flow meter, which he uses twice a day to help monitor how his lungs are doing.  I hope to get him a Microlife Digital Peak Flow Monitor soon, since he will now be very dependent on this little piece of equipment.  A digital meter will give a more accurate reading and it would also keep a record of his readings.

He has his Daily Box which is color coded green, to match his green section on his Asthma Action Plan.  This box contains all the medications that he will take everyday, regardless of how he is feeling.

He has a box (which is now a red box to match his red zone on his Asthma Action Plan) labeled "Yellow and Red Zone".  This box contains emergency relief medications that he needs if he is in the red or yellow zone on his Asthma Action Plan.

He has a box (In the market for a yellow one) that is labeled "As Needed".  This box contains medications that he takes either when he is going to be exposed to a known asthma trigger or when he is having allergy symptoms.  It also contains an extra emergency relief inhaler.

Along with his folder, he will also carry his "warm air mask", a special mask that warms the air that he breathes.  Since he is allergic to "cold" breathing in cold air is a double danger for him, because it is not only an asthma trigger (a response in his lungs) but it is also an allergy trigger and this can swell his esophagus shut.  He's had this mask for a long time and he is in need of a new one...they have some great ones out now, so I can't wait to get him a new one!  Since he may develop little to no immunity to respiratory illnesses, he also has a bag full of disposable masks so that he will have one readily available if he is around anyone who has a known respiratory illness...hopefully, this will cut back on some of the germs that may make him sick.  He also will carry Purell to help cut down on germs he is exposed to!

 

I'm so happy that his bag will not only be better organized, but it will be easier for anyone else to understand how to better care for him and it will also help him to be better able to be a little bit more independent with his own care...as he is going to have to learn how to take care of himself medically, just the same as little Johnny down the street has to learn how to brush his own teeth!  I hope in time, I can also be a little bit more at ease when he is in the care of someone else!

Worry can not overshadow thankfulness!

I've always loved this time of year!  From the wonderful colors of fall and time to think about all the things we are thankful for to the miracles of Christmas and looking forward to the start of a new year. 

For the past few years, it has seemed that at this particular time of year, as we focus on all that we are thankful for, it is somewhat overshadowed by some bad news we’ve received just prior to these holidays.  It has been my mother’s health that has been the biggest worry.  At the same time, we have been so blessed to have yet another holiday with her, and for that we are so grateful for!  If there is one thing we have learned these last few years, it’s not to take these days for granted!

My mom and Cardinal on Thanksgiving



Group picture of cousins (a few are missing)

Cardinal, Macaw and Duckling
Thanksgiving 2010

 

This year, just a day before Thanksgiving…Eagle had his first appointment with a Pulmonologist.  We should have had this appointment years ago, as he was diagnosed with Asthma when he was 2.  A condition in which was expected to improve and go away by the time he was 5.  Instead, his condition has never been controlled and has continually gotten worse.  Many times he has had “attacks” that sent him to the emergency room, and each time, we were sent away with every diagnosis except an asthma attack!  There have been times when he has grabbed his neck and collapsed to the ground unable to breathe.  There have been times when his lips have turned blue and he has repeatedly thrown up with mucus nearly foaming at his mouth.  During an attack like this, he was once diagnosed with the stomach flu, receiving no asthma related treatment and this was the last time he went to the ER during office hours!  From this time forward, he was treated by his Asthma Specialist on an emergency basis, who explained to me that this incident was caused by a “mucus plug” and that part of his lung probably collapsed.   Anytime he had an attack during office hours, we could go to his specialists’ office and she would treat him with a special pressurized machine when he would get mucus plugs.  This procedure took nearly 3 hours, but it was well worth the wait (even with 6 bored children) and we went through this numerous times.  Most recently, he has experienced panic and episodes of hyperventilation and has developed severe anxiety. 

I have always been very in tune to Eagle and most of the time I can easily tell when he is in trouble, which has been a good thing for him, because people who aren't around him a lot don't pick up on the signs and up until recently, he was really unable to communicate that he was having trouble (another blog, another time).  I have been very overprotective in allowing him to be with people, who aren’t knowledgeable with his condition and/or how to treat him when he is in trouble.  A behavior that has always been driven by an overwhelming fear that his condition is far worse than anyone knows and/or will accept and fear that one of these attacks would rob him of his last breath.  I have this overwhelming need to protect him, the best that I can.   There have been times when I have not allowed him to spend a weekend with his father or that I have asked his asthma specialist to convey the seriousness of Eagle’s condition to his father.  I allow him visits with his grandmother, but I do not allow him to visit her at her house.  I very rarely allow him to visit my own brother at his house, unless I’m there.  I will probably always be this way! 

A few years ago, a pediatrician noticed that he was on an unusual amount of asthma medications and she suggested that he should later be tested for other lung diseases.  We moved and we found a new asthma specialist, who has desperately but unsuccessfully tried getting his asthma under control.  He did seem to have a period of doing well, but this was very short lived.  His attacks got worse and he developed terrible anxiety and panic with his attacks.  After 2 episodes of pure panic and a few more visits to the ER…I demanded that he be refered to a Pulmonary Specialist, as there was no way we could live like this.  His pediatrician sent him for a PFT (Pulmonary Function Test).  The test results showed that he indeed did have abnormal lung function, but they felt the results were within the asthmatic range.  Still, he was given a referral to the Pulmonologist. 

At his first appointment, before seeing the doctor, they performed another Pulmonary Function Test.  When we saw the specialist….he was amazed that Eagle could seemingly function so well in his current condition.  He asked Eagle how he felt that day and if he felt like he could breathe ok.  Eagle said he felt fine and that he was breathing fine.  The specialist listened to Eagle’s chest and noted he heard no wheezing and that it sounded like he was moving air fine.  The test they did during that visit showed something very different.  This is why we have such a problem when we go to the ER and why other family members have such a problem accepting that anything is wrong with him….he “looks and behaves fine” and to a trained ear…he even sounds fine!  The pulmonary function test showed that at best, the large branches in Eagle’s lungs are functioning at 44% and the small branches are functioning at only 17%.  On the day of this visit, his peak flow level was 90 (a number that should be between 180 and 200) and amazingly, his oxygen level was at 98%.  The specialist emphasized how serious my son’s condition was and I was very offended to be told that I take my son’s condition too lightly!  Me, the one who has freaked out and has been completely overprotective since this child was 3….the one who worries about who he’s with, where he goes, etc, etc...the one who complains about how no one else takes this seriously! 

A mother’s intuition is such a powerful thing and I finally had proof to what my gut has screamed all along, so it didn’t really matter that this doctor had no clue how seriously I took my son’s condition….I finally have someone who can figure out what is wrong with my son and I pray that it’s not too late for him to help him! 

Eagle was put on a 3 week dose of steroids and the highest dosage of a new lung medication (a rare one, which I found out…no pharmacy carries in stock).  I understand that the benefits far outweigh the risks, but I sure don’t like that it carries a "black box warning".  Even though this isn't the first black box warning drug he has taken, there is still some level of uneasiness using such a drug.  I researched this new drug and found that it is usually given as a last resort and to children over the age of 12.  As with all drugs, this obviously has some side effects, I'm not to fond of the ones that this drug carries either...loss of bone density, reduced growth, immunosuppression, adrenal suppression and increase in asthma related deaths (this one is hard for me to swallow)!  I have to remind myself that no other treatments have worked and that he can not continue to live in his current condition...this is a last resort!  He will continue to take his 4 other asthma medications along with this new drug.  He was given a new Asthma Action Plan and I was told how to handle emergencies in the ER from now on.  I was told that he should be admitted in the hospital with any peak flow reading of 150 or under.  I was allowed to take him home the other day, only because his condition was chronic and because he was behaving normally.  The specialist says that Eagle is to a point where his body has simply adjusted to this way of living, but that he can not live this way!  If he had normal lung function right now, he would be in a panic saying that he is unable to breathe, but for now…this is normal for him.  This doctor suspects that when Eagle gets to the point where he is saying he can’t breathe and is to the point of being in a panic…he thinks that he would only be functioning at a total lung function of 20% and that would be life threatening for Eagle. 

Right now…my son should be admitted in the hospital and listed in “critical” condition…and he is instead, enjoying an extended weekend with his father J  Can you be any more thankful than that?  I didn’t get to spend this Thanksgiving with him and while I am so thankful that he is able to function so “normally” in his current condition…I am scared to death!  I know how quickly his condition can deteriorate, as I have seen it many times before!  I fear what the future holds for him, but I will remain hopeful!  For now…the steroids are working, as his father reports his peak flows are hitting 200 :D

On Monday, he will have his Cystic Fibrosis  testing (as this does run in my family and he is obviously exhibiting symptoms of the disease).  Next month, he will have some blood allergy testing done and in January, if his condition has not improved under the new treatment plan…he will be tested for many auto immune disorders/diseases, as at that point it will be assumed that there may some disease attacking his lungs. 

So, while this Thanksgiving was partly overshadowed with worry…we still had so much to be thankful for and we are so blessed!   

Cardinal’s choir performed downtown during the lighting of the Christmas Tree and she was in the parade!  We had a wonderful time enjoying the holiday festivites! 



Emu enjoying a ride on the Scrambler!



Duckling and Macaw having a blast!

Bundled up and ready to go



This week we will put up our Christmas tree and decorate our house.  We look forward to spending this holiday season with family and friends and we will enter into the new year with hope! 

A crazy day calls for The Ugly Duckling

Any homeschooler knows that sometimes, you just have days like today!  The kind of day when you just want to pull your hair and everyone else's hair out.  For us, this is the type of day when I have no choice but to include the preschoolers in a 2nd grade lesson.  Thankfully, it just so happened that Eagle's Literature Lesson was The Ugly Duckling.  We read the story, although, it was not an easy task....ahhh, you just have to love Emu :)  We then had a discussion, or tried to anyways.  As always, I searched for a craft to go with our story.  I was thrilled to find the handprint swan craft.  On a day like today, I should have known that this would turn into an all day project!  The swans are complete, but poor Duckling had to take her nap before we could finish.

Macaw, working on her wings

Duckling, tracing her foot for the swans body

Emu, utterly confused as to why we put his foot on his tp roll...he thought I was so silly

You gotta love Emu's "are you happy" smile

Eagle with his completed swan

Eagle and Macaw pose for a picture



  I am excited that we are finally at a stopping point for the day and so glad that it is Friday.  We are going to pack up some school work and head off to Grandma's for the weekend. 

L is for Lice, M is for Malathion, N is for Nix and O is for Ovide

I promised, the good, the bad and the ugly....Right now, we are dealing with the bad and it is very ugly!  We have had the displeasure of having lice for the last month or so.  It is the first time we have ever had such and encounter and we sure hope it is the last!  About a month ago Hawk complained of his head itching...sure enough, I saw something I had never seen before LICE and nits.  So, I ask everyone..."does anyone else's head itch"?  I had a few replies, but only found nits in Eagle's hair.  In a panic, I go to the local drugstore only to discover how expensive lice treatment is.  The pharmacist advises me that our insurance does cover these treatments and while she didn't want to offend me, she doubted I could afford to treat all of my 6 children.  With out a penny to spare and unable to afford to treat the boys, I hold my head down low I head to the counter with the $7 lice comb set and head home to research home remedies.  I decide to go with the shaving cream and vinegar idea.  The chemicals in the shaving cream are suppossed to smother them and the vinegar is suppossed to release the nits (eggs).  So, I strip everyone's beds and bag up Hawk and Eagle's pillows.  Wash everything in hot water, vacuum their beds and floors.  Then scrub a dub two boys in the tub with quite the spa treatment.  First, the comb treatment.  Then, shampoo and another comb treatment.  Followed by a head full of shaving cream.  Next, the lovely shower cap!  They each sat for 10 minutes....then another comb treatment.  Ahhh.....then came the vinegar!  From their reaction, it was very unpleasant.  Once again....the comb.  Next day....nothing! :)  I called the doctor, in hopes of getting a rx.  No such luck!  They thought that I had possibly gotten rid of them...afterall, I did everything right, and I wasn't seeing anything.   So....we wait.  I check them everyday but still continue to wash sheets, blankets, etc. EVERYDAY!!!  Three days later, just in case...they get the spa treatment repeated!  At some point, I did find nits in EMU's hair...so he was added to the spa treatment regimen and he didn't like it either.  Again, we wait....oh, and the laundry....UGGHHH, so much laundry!  Then.....Lice, only a few, but nonetheless...Lice!  Another call to the doctor begging for a rx.  Only Eagle gets the rx because he's the only one with anything visible.  Treatment and continue with laundry (hats, gloves, coats, sheets, blankets...it was quite ridiculous) and vacuum.  Ahhh....and at last, they seem to be gone.  More than a week, almost two goes by and nothing!  Whew, that wasn't too bad :)

Emu has a check up for an ongoing ear problem.  No big deal, easy appointment....right!  Seriously, nothing goes easy for us!  As I'm sitting there talking to the nurse, telling her we are simply there for a re-check on his problem ear.  I begin to tell her "I think we finally got......" and I literally stop mid sentence!  "rid of the lice" was not how I finished that sentence!  I took a closer look at the "bug" I saw in his hair.  I was a little confused, because this one was dark, almost black...unlike the other Lice I had seen.  I ask "is that just a bug, or is that Lice"?  She instructs me to wait for the doctor.  Great, I'll just sit here and leave this bug in my son's hair, no big deal.  Uggh!!!  So, the doctor comes in and I say, "I was just telling the nurse that we finally got rid of the Lice, but, is that lice in his hair"?  At a first glance, she herself wasn't sure.  I say "it just looks darker than the others, the other ones didn't look like that".  She agrees, it does look dark, but....upon a closer look, yes, it was Lice.  She spent about 15 minutes looking through his hair.  Neither one of us saw anything else.  Since nits can literally be microscopic in size, she thought we should treat him anyways.  Frustrated, I went to the pharmacy to get his rx and decided to get Eagle's again too!  I come home and search through everyone's hair and both Hawk and Eagle had a few active bugs in their hair.  So, I treat all three of them with the rx.  Whew...again they seem gone and this time they should be, as the rx kills louse and nits!  Relieved, I do one last go around on the vacuuming and laundry!  Four or five days pass....UGGHHH!  Seriously are these things ever going to be gone! 

I refill everyone's rx and treat again!  This time after shampooing and treating, I comb again after and was STILL getting live louse!  I call the doctor the next day and they couldn't believe that I combed live louse out AFTER treating.  That's just the way our luck goes!  So, now they prescribe Ovide....but warn, that it is very strong and irritating to the scalp.  My poor babies...how much pesticide can you put on a child :(  The pharmacy didn't keep this in stock, so we had to wait another day for it to come in.  I resist the temptation to shave them all bald, however, they all recieved a very short cut!  Anxiously, I am ready to treat them all before bed...only to find out this stuff has to sit on their head for 8-12 hours.  So, today was their lucky day!  This stuff smells like a mix between rubbing alcohol and gasoline.  It too, is extremely flamable, so it will be an interesting day!  They are all complaining off and on of their head burning and I know what this stuff did to my hands in the short amount of time it took me to put it on them.  I feel so bad for them and can't imagine how their heads are going to feel by the time this is all over with.  Here's hoping this stuff works!!!!  It's been almost 3 months :o

Everything in life is a lesson and through all of this....we have learned a lot about Lice and their life cycle!

• Lice need human blood to survive...if they fall off of your head, they can only live for 24-48 hours
• Nits are eggs and they can be so tiny that you need a microscope to see them
• It takes about 1-2 weeks for the nits to hatch
• One louse can lay up to 100 nits
• Your entire house can not become infested
• Pets can not get lice
• Lice have been resistant to the medications and treatments we have tried
• L is for lice
• M is for Malathion
• N is for Nix
• O is for Ovide

As always, even through times like this...we have learned to count our blessings!  Ovide came with a price tag of $179.39 for each bottle and we got three and we are also so thankful that the boys are the only ones who have gotten it!!!!!

Corn Dog Recipe

The corn dog recipe for this week was wrong on my menu page :(.....here's the recipe

My nest is still Cukoo!

While my nest is still cukoo and always will be, my blog is not.  There was just something about misspelling cuckoo to make a blog work....and so......here we are again, new and improved already, lol.