Boiling Frogs and other CF musings

So, Faith is home from her latest hospital stay. This one was harder on us all, mentally. This fall we changed CF centers from Tampa to Orlando. Although we loved her doctors and the hospital, her care is becoming more cumbersome since we chose that center seven years ago and she needs to be seen closer to home. Some of the stress was due only to the change in atmosphere. R, F, and I are all first children. We are NOT fans of change. Period. This is not a reflection on either her new doctors, or Arnold Palmer. We really like her new center and especially her new pulmonologist and GI doctors. Procedures and hospital protocols are different and we didn't know what to expect. One example of this was her IV line. In the past she has always had what is called a midline. Picture a tiny straw inserted in your vein on the inside of the elbow and run inside the vein to your shoulder. This new Dr./hospital protocol runs a PICC line. Basically the same thing, but the 'straw' runs almost to the heart and dumps the meds straight into the vena cava. This is a much bigger deal for insertion than any of us are used to, but in hindsight, she likes it better for actual delivery of meds. Remember, this is my example of several things. When Faith was first diagnosed at 18 months we were offered an opportunity to meet a young woman who had CF. We were told that Natasha was 'doing really well' and 'often spoke to newly diagnosed parents'. Natasha was coincidentally inpatient at the time. Weren't we lucky?!? My thought process at the time was "she's inpatient! How well can she be doing?" and we did not meet her. Our story with her circles back around, two states away and un CF related, because God has a sense of humor. But that is another post. Fast forward to our move to Atlanta to be near better care. Faith is two now and I have joined a parents support group. I have also given birth to another child (I was 7 months pregnant when Faith was diagnosed) and again, because God has a sense of humor, gotten knocked up for a 3rd time, despite our joint infertility issues with the first two children. Surprise! None of those drugs needed this time, but I digress. I am now in a parents support group with an AMAZING group of parents that I still lean on today. Most of us have two year olds, but there's this one mother, Linda. First of all, she has her PHD. Secondly, Linda has a 12 year old girl with CF and more life experience than I could have imagined then. Seriously, the woman answered questions that I was too stupid to even know to ask at that point! I soaked up her every word in total love/hate denial, and she intimidated the hell out of me! She was so wise, but surely I was never going to need that information... After all, a cure was right around the corner, right? That's what they all kept telling us. I was never going to need her wisdom because there was surely going to be a cure before Faith was 12! At five Faith had her first Bronchoscopy. This is a procedure where they put your baby under anesthesia, and put a camera down into her bronchial tubes. Sterile saline is squirted into her lungs and suctioned out, hopefully, along with mucus plugs that they can get to in the large airways. These plugs are then tested to determine what bacteria is growing down there. It helps them target antibiotics. Let me tell you, THAT was a Big deal! Yes, its a rather common procedure for CF patients, but this was her first big thing and it was HUGE to us! I often tell Mom friends that post 'minor' surgeries (tonsils, etc) to fb, "There is no minor surgery when its your baby going under." Obviously, we got past it with only a few emotional scars and she's had 2 or 3 since then. Two OR three. I cannot even remember at this point! At nine, Faith had her first IV antibiotics. Again, a HUGE deal! We were sent home with training and administered them ourselves. Again, administering your own child's IV's through a vein is not like giving them some pills. The pills at this point were piling up too, but when you only add one or two at a time you don't really even notice anymore. There is an order to IV's. Its called SASH or SASASH. s=saline, a=antibiotic, h=heparin. Saline rinses the line, heparin keeps the blood from clotting in the line until your next dose. R and I were both a sleep deprived nervous wreck that first time. I was so afraid of that line getting infected. Can you imagine giving your own child a deadly blood infection? Now we are on time #5 and just take it all with us. Restaurants, shopping, church, Disney. We just hook her up and keep on walking. Are you starting to notice a pattern? I was too, in the back of my mind. In the WAY back! During this last hospital stay we were sent to X-ray for a swallow study. The reason Faith was hospitalized was pneumonia, but the reason she was suppose to be hospitalized the next week was to have a feeding tube placed. After a decade of fighting it with her doctors, we had finally come around to its need. So, this still has to be done after the new year, but her lungs had to clear first. This was the reason for the swallow study. It needed to be done for the tube surgery, and well, we were there.. After her study, Faith and I sat in the waiting area for transport to come escort us back to her room. While we waited, they rolled out a baby in her cage. For those of you happily not in the know, a hospital baby bed looks just like a rolling metal cage. The kind you picture for circus animals. As Faith and I sat there joking around I flashed back to her first stay at Shands and her cage. (push it to the back, this is not the time) Then another Mom with a baby came in. She had her toddler in a stroller and had to interrupt her feeding for an X-ray. She came out without the baby, I heard the baby scream, then it was over. Instinctively, I said aloud, "Wow, that's going to be a good X-ray." and meant it. When they X-ray toddlers they sit them in a seat that wraps around and strap them in and send the parents out. The child is not happy. Faith's first X-ray went down just about the same way and we were worried. The technician assured us that it was a great picture due to her drawing in a giant breath and holding it just before she screamed. (more flashbacks, STILL not the time. Push it back) So, Faith and I are sitting there still joking around while these other two, unfortunate Mommies sat there looking shell shocked. In that moment I wanted to go to them. I wanted to put a hand on their shoulders and tell them it was going to be okay and that their babies were in good hands. Theirs mostly, but the doctor's as well. I didn't. I couldn't. Why couldn't I reach out to these women? It all came to me in a rush. Faith was now Natasha and I was Linda. You may think they might have wanted my reassurance. In a lesson that can only be learned the hard way, I knew that they did not. We were the proverbial frogs in a pot. The temperature had been turned up so gradually over the years that we barely even noticed. All at once I looked up and thought, "Holy crap! When did the water start boiling?" This revelation could not have come at a more inopportune time, so once again, Push. It. To. The. Back. When we came home from the hospital this time, Faith had night terrors for the first week. I know this visit affected her more too. Reoccurring dreams about not being able to breathe, in her words, 'drowning in her own mucus'. Hospital staff always assume Faith knows more about her long term prognosis than she does. Every stay is marked by at least one person giving her an education on a new topic about what she may face in the future. This visit was ports and transplants. This round also interfered with her birthday. After the first week of antibiotics we went back for a pft check up. Sitting on the table getting her vitals taken, my girl was all preteen nonchalance. Reading her kindle and holding out her arms and fingers for the routine stuff she's done a thousand times, you could almost hear her boredom. Then her blood pressure came back. The top # was 110. Then her heart rate. High 90's! R teased her about being a duck and it was the perfect analogy. She was all calm and serenity on the surface, but paddling for all she's worth under the water. Her PFT numbers improved significantly and the nightmares stopped. She's back to her old self again and we celebrate her 13th birthday in a few hours. The human brain is a magnificent organ. The adrenaline gets you through the water temperature increase, but it cannot be sustained. Eventually, for your own sanity you get comfortable in your new temperature and we are getting there again. Still, this time, I cannot un-see that this pot is freaking hot!

New Year's Eve Party 2012/2013

Happy New Year 2013! New Year. New Experiences. New Challenges. As my uber-salesman husband likes to say, New Opportunities! In that spirit, we allowed The Blessings to stay up until midnight for the first time last night. The morning of NYEve, they were greeted by party invitations on their school desks. The entire day was filled with anticipation (and a few empty threats on our parts to cancel the whole thing if the 'enthusiasm' was not tempered) By 5PM when R and I began putting up the decorations, emotions has reached a fevered pitch. I was beginning to think there was no way this thing was going to live up to expectations.

The balloon/streamer wall was erected, complete with glow sticks inside some of the ballons. The numbered balloons had a slip of paper inside each one with an activity of that hour written on it.

The Blessings did not know what to expect. R told them that the numbers were for the multiplication tables they had to recite when that balloon was broken. By 8pm (party time start/regular bedtime) they were convinced that they were in for an evening of rousing multiplication tables, math word problems and sentence diagramming. After all, they had never been to an NYE party, they didn't know what to expect. Finally, the hour arrived. 8 O'clock:

The baby blessing was given the first balloon pop! What did it say?

In the spirit of Christian humility, our baby blessing trampled us all! In our defense, the cards were leveled. She got questions like: Who built the ark and saved the animals during the flood? While we got: How many books of the New Testament did the Apostle Paul write? Name them. To her credit, the Bookish blessing still almost beat her, and the 'boy'sterous blessing played under formal protest that Pastor Gray had fed him incorrect information in a recent sermon.

The 9 O'clock hour:

Boysterous blessing got the ballon pop. The activity for that hour was to make a time capsule. Everyone answered questions like favorite food, favorite book/movie/animal etc, then they popped the balloons with the glow sticks.

that last picture of G cracks me up. She had become a bit 'balloon shy' by then. 10 o'clock:

Making noise makers and confetti for midnight!

11 O'clock: making (and eating) ice cream!

Then Daddy broke open the 'bubbly'!

Yes, F IS holding that glass like a pro! We choose to simultaneously point out and ignore that:) Snuggling under the blankets from the cold ice cream.

Finally the big hour arrived! Happy New Year 2013!!

Revolutionizing the checkout lane

My husband, R has theories about life. LOTS of theories. Some are about the big stuff, some the mundane, some are just ludicrous, but we'll keep those "inside the sanctity of the marriage".
Last night, while discussing one of his well loved theories, we began to expound and came up with a solution that we believe would revolutionize retail checkout. (Specifically, grocery stores and the Walmarts and Targets of the world) My love is invariably sent to the store at least once a day to pick something up for our house AND he is a man. Therefore, he wants to get in and out. No need for chit chat about the weather. You might say "use the electronic checkout" however, many of his purchases include age restricted items (see alcohol) and this now involves an employee to become involved....FAIL.
I will spare you the gender/class/race generalizations that led him to his original thoughts about choosing the employee "checker" and cut right to the chase.
Checkout lanes will no longer be classified into 10-20 items or less and Duggar style shopping.
Lane 1. The lane of shame: This lane is reserved for those buying tampons, condoms, hemorrhoid cream, and the inevitable combo purchase of batteries and KY. The employee in this lane is specially trained NOT to speak to the customer or even make EYE contact. This lane closest to the door, brown paper bags only and NO intercom price checks!
Lane 2. The common social pleasantries lane: This lane gives quick efficient service, while still maintaining an environment of basic social mores. The employee that works this lane is trained to be quick, smile, say "thank you" and move right along. (IMHO, all lanes at all stores should be this lane)
Lane 3. Building a relationship lane: I shop here often, I want the employee in this lane to acknowledge this fact, say hi to the kids and ask if I found everything okay. Maybe one time out of ten, ask me if I have any suggestions to make my shopping experience more pleasurable at this store.
Lane 4. The Shopping is my sole source of social interaction for the day lane: We live in Melbourne FL. Thus, the demographic of our neighborhood skews to this population. Skews HEAVILY. The employee in this lane is trained to eye your purchases, ask about the meal you are preparing with your items, and suggest new recipes based on, said items. The employee will also inquire about your health (see bowel movements) based upon the remedies placed upon the conveyor belt from the pharmacy isle, and perhaps a new hair color based on the items from the toiletries isle. All weather, sports, political, and religious conversations are to be held in this lane. All pictures of grandchildren and dogs are to be shown in this lane.
At this point, we were done, but in a nod to the reason the electronic checkout is a fail we created just one more.
Lane 5. The Intervention Lane: Excuse me Mr/Ms D, but I can't help notice that you are in here buying wine AGAIN.....

A blonde walks into a car dealer service dept.........

A great beginning to so many jokes....
This one, however, has a twist to the punch line. Bear with me. A couple (few) months ago the check engine light came on in the Sequoia. R took it to the local "Car doctor" they ran diagnostics, nothing wrong. Turned lights off on dash (there were two others on too) "that'll be 90 bucks sir."
The next day on the way to Orlando, lights come on again...wow, it has been a while. That was before our seasonal passes blocked out for Disney. So I figured "hey, just checked yesterday...it's fine." R says he'll make an appt @ dealership. He doesn't. Recall notice comes in the mail. Sounds like it may have something to do with the other two lights that came on, so he finally makes an appt. After all, it's a recall, so fixing it will be free. RIGHT?
Fast forward to today. Noon. I drive up to service dept. Three kids, books bags, Wendy's lunch. (Don't judge me. Kid with CF. high fat, high salt is health food)
Young guy (see kid, child, embryo...he called me maam, and I don't think it was southern politeness) meets me at the service dept driveway. We go through the whole schpeel. I ask how long it will be, he gives me an "estimate". On time, not cash. As I get out and hand him the keys; as I'm opening the door to the backseat, I throw out there "BTW, I have 3 children that will be waiting with me and if I think this is taking too long, I WILL let them run through the showroom cars, honking all the horns." That was my first "...Uh, yes ma'am" (he almost saluted)
I pile my ducklings out of the car. For those of you that have piled 3 kids out of a car with schoolwork and lunch in hand, you know this takes quite a while. At this point, there is a LINE of service techs opening doors, offering to carry bags, etc.
So, my brood and I take completely over the service area waiting room. As we walk in, the other customers scatter. It was almost as if we had signs across our foreheads that proclaimed EBOLA patients! Yeah, yeah, I know, school is back in session and blah blah...its okay. I get it. If they weren't mine, I would've headed for the hills too. Just as well. I announced that the TV had to be turned off just as the last of them were leaving the room.
We ate our lunch. I started school. Employees kept walking through. A lot of coffee was retrieved from the pot...I suspect for all the other customers waiting out in the newly constructed "no children waiting area".
Those who braved the scene seemed impressed by both the kids and the schooling. Not pride this time. I myself was pleasantly SHOCKED at how well they were behaving.
So, it's time for the service guy to come "deliver the news".
This is where it gets unconventional.
Mrs. Dunlap? / Yes? / Well, the good news is your car is not affected, at all by the recall. This is the "good news"? In my head I hear, "So this won't be on the house"
Me: Okay, so what is it?
Him: The check engine light is on because of an O2 sensor problem.
Me: And this means?
Him: Well, the O2 sensor lets the catalytic converter know...blah, blah, blah....(why am I bothering to to go through this explanation with you, a WOMAN, who clearly knows NOTHING about which I speak) blah, blah, blah....
Me: Oh, so it's strictly an emissions problem
Him: (Silence, hear crickets)
Me: This has nothing to do with the safety and mechanics of my vehicle, does it?
Him:..Uh, yes maam, but the catalytic converter blah, blah, (oh shit) blah blah...nods toward my "precious cargo" blah blah safety blah blah...
Me: But, you can actually take a cc off of a car completely and not affect the safety of the vehicle. CANT YOU???
Him: head hung...yes maam.
Me (again): So, this IS only an emissions problem. RIGHT?
Him: yes maam.
Me: And when I lived in GA, I had to have an emissions test to get my tags. (Pregnant pause) I don't have to have one of those in the State of FL, do I?
Him: (head hung low, face red by now) mumbles no maam.
And there is was...Victory.
I'm old. I've mellowed. I needed no more.
Me; Okay, we're here, do it.
In the interest of full disclosure, my father is a mechanic. A jet engine mechanic by his first profession (USAF), an LC hovercraft mechanic by second career (NAVY) and a "drone" QC mechanic guy for a civilian contractor for the third. (None of our cars EVER went to "the car doctor" when I was growing up...come to think of it, no repairman ever darkened our doorstep. The man did everything!) Every mechanical term logged into this old cranium came from him. Ten thousand other things could have been wrong with this car and I would have been clueless. But it wasn't. So, for today, at least...THE BLONDES WIN!!!
(and I know what you are thinking....my hairdresser will NEVER talk!)

Tales from the backseat

Okay, first and foremost, facebooking has had an effect (or is it affect, I always confuse those) on my blog. It is so much easier to just post a quick update than sit down and write an entire blog entry. To this end, I will rededicate myself (again) to more postings. Even if they are as short and sweet as a facebook post.
Today, my little students worked diligently and finished school before lunch. As a reward I decided to take them to the beach after (lunch).
This is a tale from the backseat on the way to the beach.
G states that I "must" take her to Disney to let her visit Pooh and Tink. F tells her that I only have to do what the bible says and that no where in the Bible does it say that I have to take my children to Disney. G (not missing a beat, always ready with a sassy answer) says "oh yes, it does, in Romans, Chapt 13, verse 22!She was "selling it" I had to admire her:)
W, from the third seat, happens to have his Bible that he did not take inside after church on Sunday decides to look up this passage.
Turns out Romans Chapt 13, vs 22 does not exsist. He asks her "Are you sure you didn't mean Chpt 14? There is no vs 22 in Chpt 13 of Romans."
G plays along and gives him subsequent chpts to research.
The next one he is assigned is somewhere in John. "The man went out and told others that Jesus had healed him" (I paraphrase)
This is where I chime in..."Yep, no Pooh in that passage either. G are you sure you read this in the bible?"
Of course this only serves to give my blessing to this new game of theirs and fuels the fire. W is given more passages to find and read...none of which say I HAVE to take my kids to Disney, BTW.
W is frantically thumbing through, giving G more ideas. He hits the book of Job(e). He askes her. "Is it in Job?"
F speaks up. "OH, You won't find ANYTHING enjoyable or very entertaining in Job(e)!"
Me:(thinking she's only bluffing) calls her on it."oh really Faith, and what does it say in Job?"
Faith: "That's where Satan destroys everything and everybody that Job has. His house, his family, .....and goes on and on. Keep in mind. Although I am familiar with these stories, I am sure that I have never discussed them with her. I actually find it a bit unsettling that God would play games with his poor, faithful servant in such a way. This knowledge has only been aquired by her own reading and attention to Sunday sermons.
As she's going on (and on and on) I find that my work here is done.
DONE!

We're Floridian Now!

It was brought to my attention a couple of weekends ago how “Floridian” we have become. Shoes(MIL), Aunt Joey(SIL), and her two children (Sweet Jenna and Jackson who endured an entire piano recital without complaint) visited. Right here I would like to insert how blessed I am to have these two ladies in my life. I understand that not everyone feels that way about their MIL, and SIL, but I do, and yes, I DO realize my great fortune. In fact, the original plan for this blog post was to gush about them and our wonderful relationship, but that's just not nearly as entertaining. The first night Shoes was relating a scarring story from her past involving the dreaded palmetto bug. Twenty min. later, I went to the bathroom and had to kill one such bug crawling across the floor. The next day the cousins flipped out over a spider in W’s room, where my own children’s reaction was to to calmly explain that “spiders are our friends…..they eat the mosquitos.” Then Will went into a lengthy oral bookreport on Charlotte’s Web. Day three (and last of their visit) we come home to a snake crawling across the sidewalk to the front door entrance.Again, my family just steps over the thing while our guests are left to....well, not be so pleased. This was Aunt Joey's (R's sister) first trip to our house since we moved to FL. I wonder just how long it will take her to return... Here are some pics from piano recital night. It was my boy's first, and Faith's second recital. Of course beaming with pride would be an understatement.

Family vacation

Have you ever had this experience? You get a puppy. It eats your shoes, pees in the floor and does other sundry annoying "puppy things". Finally it stops. You've done your job well. Mostly it's just "grown out" of these behaviours, but you pat yourself on the back just the same. You have a loyal, bonafide member of your family. Your new life companion. A little time goes by and one day you look at your loyal friend. Of course you've looked at your loyal friend everyday for the entire time you've had him, but this time you notice something different. Your loyal friend, your life companion, has a graying muzzle. You would swear it wasn't there yesterday and your heart hurts just a little. The next day you notice even more gray! Where did this all come from? And now the chest! Your loyal friend seems to be aging overnight.
This exact thing happened to me recently. Only I don't have a dog. Our family went to the Keys for vacation in early May. My husband didn't shave. Out of no where came the graying muzzle. The next day there was even more! Since we were in the Keys, most of our time was spent in swimsuits so I saw him without a shirt more than usual. There it was all over his chest! My initial reaction was the same as with the dog, but it only lasted a split second. My second thought was, "It's okay, he doesn't have a life expectancy of only 15 yrs" In the third second I reached "Well, it's about dang time!" Here I am aging all over the place and this man has seemed to be doing some Benjamin Buttons routine on me for the past few years. Seriously, the man runs marathons.....LOTS of them!
So, my love, welcome to middle age.....I've been waiting on you.
Below, I'm posting some pictures from our trip.