Don't Let It Fool You

The fact that Frank's been in the hospital hasn't been that "hard" for him. Here. Let me show you...


We arrived home on schedule and met with the Home Health Care Nurse. Unfortunately (for me) a dose of medicine has been added, so, instead of 2 1/2 hour doses every 8 hours, we've got 2 1/2 hour doses every 6 hours. So, I now MUST get up in the middle of the night for a few hours every night and Frank must be connected to the IV Line 8 hours out of every 24!

Let's just hope and pray that when the cultures come back (Wednesday) they'll have grown a bug resistant to an oral antibiotic, and we can pull out the PICC line!

Today's Plan

Well, we got a little more sleep; at least we at the hospital did - at the Ronald McDonald House, Jack was waking up at 4:30 and no one in the room was allowed to sleep... hee-hee-hee.

This morning, we clean up; then pack and load the van. Prep with others for prompt discharge and Home Health Care. Blood draw at 11:30 am, IV Drip starts at noon, finishes at 2:30 pm. Then, we're outta here!

We'll stop and let Frank (and Jack) walk around Toys-R-Us for about 45 minutes before we are ON THE ROAD! So... by 4:00pm we're driving through the fresh snow in the mountains. Our goal is to reach home and meet the Home Health Care right at 8:00... in time for the next dose of medicine!

Which reminds me, I may need to pick up some Benadryl and Tylenol to give on the road... I'll find out how much Frank needs and see if I have enough in my portable Medicine Bag.

We're all feeling pretty good and refreshed, which is a good thing since we'll have another long travel day ahead of us. :D

Our Day in the Hospital

Has been uneventful. Frank feels great. He’s been very cooperative and only complains a little when his PICC line is connected and he has the oxygen sensor on his finger… he just doesn’t like the cords and lines.

He was given Rifampin this morning, which went fine, and as predicted, turned his pee a bright red-orange. Weird!

Right after he took the Refampin, the Infectious Disease Doctor called and said we should treat Frank for The Red Man Syndrome and slow down the dispersal of the Vancomycin… yes, he needs to stay on it, at least until they get some lab results back on just WHAT the bug(s) is. So, now, Frank gets Tylenol and Benadryl thirty minutes before his antibiotic, and then the Vancomycin is given over a TWO HOUR time period, three times a day. I’ve chosen a 4-6a, noon-2p, and 8-10p schedule for giving the medicine. When we get home, I’ll probably start going to bed right after Jack (at 8pm) and letting Tom give that dose, then I’ll get up and give him the 3:30 am pre-meds and the 4-6am dose. Hopefully, I’ll be able to give him the medicine while he’s sleeping and I can go in the next room and sew or something… we’ll see what the Home Health Care Machine and such is like. Maybe I’ll just sleep on his bedroom floor each early morning. :P

Let’s see. Tom came and spelled me this afternoon. I was able to go see the Ronald McDonald House, which was A.MAZ.ING and is worthy of it’s own post! Then, Jack and I went out and did a few “City Errands” before coming back around dinner-time.

Again, I’m VERY tired! Still haven’t caught up on the sleep. When Tom arrived at 8:30 this morning, he said I had big circles; I can't imagine what they look like now!

Oh yeah… we’re spending another night in the Hospital. Because of the allergic reaction, the blood draws were delayed. Frank needs three full doses and then two blood draws two hours apart, so, I’m not sure if the blood work will be done at 2 and 3:30 am or 10 and 11:30 am. Either way, we should be admitted in time to drive home during tomorrow’s projected storm, and then race to meet the Home Health Care Nurse and give Frank his NEXT dose of medicine.

{Can I rest yet? What about on Monday? Can I rest then?}

I think I’ll go find out when the blood draws are do and then go to bed.

PS: Pictures will have to wait until I'm back with my laptop that has an SD Memory card slot. ;)

Frank's Surgery

Thursday 25 December 2008 – Christmas & Prep Day
1100 – 1800 – Mom makes Hospital Gowns to prevent irritation to Frank’s sensitive skin (and to give HER something creative and relaxing to do while waiting for surgery day).
2000 – 2100 – Pack bags and put by front door
2330 - "Midnight Snack"

Friday 26 December 2008 – Surgery Day
Midnight – Mom & Dad to bed.
0500 – Mom Awake
0600 – Mom & Dad get up. Shower, load van, pack last few items.
0700 – Hit-the-Road – Three hour drive.
0720 – Electronic Highway Signage warns that Freeway is closed. Alternate is researched and traveled.
1000 – Arrive at half-way point (distance wise), normally would have arrived at destination by now.
1145 – Check-in Time at hospital.
1215 – Arrive at hospital (30 minutes late). Total travel time (3 hour trip) 6 hours, 15 minutes.
1315 – Surgery Time, wait about an hour.
1415 – Wait another 45 minutes… Mom and Jack go to Cafeteria for “lunch”.
1441 – Anesthesiologist arrives to take Frank. Surgery should take about an hour, but 90 minutes is reasonable. Dad and Frank are surprised, Jack and Mom RACE back upstairs to say “See You Later” to Frank.
1446 – As Mom, Dad, and Jack walk away, Frank is dancing around in the hall telling the doctor about his Stuffed Penguin’s Reversible Hospital Gown (that matches Frank’s two gowns.)
1535 – Dad goes to get something from the Van.
1546 – Surgeon arrives and Jack hi-jacks him showing off HIS Hospital Gown and matching dolls’ gown… doctor doesn’t even realize he’s suppose to be talking to Mom! Dad RACES back upstairs to talk with doctor.
1603 – PICC line in successfully … 27” long.
1620 – Dad and Jack head out for a break (and dinner).
1628 – Frank is ready for Mom.
1632 – Mom gets back to Frank, who woke up mad – yelling he was hurting and kicking his feet, so they gave him Morphine... and he crashed again.
1900 – As Dad is kissing him good-bye, Frank wakes and says “Is it over? I didn’t feel anything.” Dad told him that he’d need to stay at the hospital an extra night, and Frank ask if he “have to be hungry tomorrow too.” Did I mention that all day long Frank never complained about not being able to eat or about being hungry? He did get quivery-lipped and said “I just want my surgery to be done.”
1900 – 2000 – Frank eats… a lot! Water, crackers, ice cream, pancakes, peanut butter, and milk.
2030 – Frank doesn’t like all the “things” attached to him and wants to go for a walk.
2110 – Frank starts his antibiotic. We’ll need to administer it ever eight hours, for an hour at a time. HE HAS AN ALLERGIC REACTION to the Vancomycin – Red Man Syndrome – Flush, torso pain, crying and upset – Benadryl & Tylenol must change medicine and tell ANY and ALL doctors that he’s allergic to Vancomycin. This is not surprising in-the-least! Both sides of Frank’s family have allergies… drug, environmental, and food, so, a drug reaction is almost to be expected. Now though, I wonder how much longer we’ll have to wait to be discharged. They want three doses of his antibiotic in and two blood draws before we leave. It looks like we’ll be spending two days and nights here instead of just outpatient or one night. At least there’s a washer and dryer (for patients) down the hall. Also, we were blessed that my friend suggested and we got a room for Dad and Jack at the Ronald McDonald House… this cuts WAY down on our expenses! We also discovered the Parent Resource Center has free tickets to local museums and the zoo… to Dad and Jack are going to the Children’s Museum tomorrow after they visit in the morning.

All-in-all, after three months of troubles, and after Frank’s original surgery, I surprised myself with all my calm today. Right now, I’m so beat I can hardly keep my eyes open and I’m getting several headaches (different places are hurting), but, we’re waiting to hear back from the doctor about Frank’s reaction to the Vancomycin, so, I hardly want to go to sleep for them to wake me and be groggy… but maybe I will lie down.

PS: This post is going out the next day due to technical difficulties. Also, I just noticed that THIS is my 300th post! Wow!!!

On Our Way

To Salt Lake for Surgery... and... the road's closed. We had a storm come through last night and the spot that's closed is prone to icy roads and high winds. We'll have to take an alternate route, which will add 1 1/2 hours to our 3 hour drive. We gave ourselves 4 3/4 hours to get there in time for Check-In.

Luckily, the surgeon knows were traveling from afar. So, if we're delayed too much, we'll call and probably Frank's surgery time will be pushed back some more.

Currently, windy and partially icy roads.

(PS: One nice thing about Tom's job is his laptop with mobile dial-up!)

What We've Scheduled

We’ve had a very long day of travels and lots of talking with medical personnel.

Frank will be having surgery on Friday, at 1:15pm. He was scheduled for 10:15, but we would have had to leave in the middle of the night or spent Christmas Night in a hotel, so, the Surgery Scheduler Rescheduled two other children to go in earlier. This is good for us, since we’ll be able to leave at 7am on Friday to go over.

During the removal of the wire and infected tissues (soft and or bone) a PICC line will also be put in. Because of the PICC line, Frank will need to spend (most likely just) one night in the hospital.

We already have a reservation for a nearby hotel, which Tom and Jack will stay at.

I’d thought we could care for Jack while Frank had his surgery, today I wondered more about that, but, since we don’t have many other options, I guess we’ll have to make it work. I will appreciate having Jack nearby, he’s just so crazy and wild and I get so stressed out with all the things I’m thinking of and trying to remember to ask. I know it’s not in Jack’s nature to just sit and be still, but at times like this, it would be nice if he could.

We’re driving home on roads covered in blowing snow with occasional ice. Tom was able to barter with his boss (he traded a vacation day to spend today doing “phone fixes” and physically take care of his calls tomorrow). I’ve been very glad to have Tom driving today!

The Infectious Disease doctor and his Physician’s Assistant and Nurse… I liked all of them. A lot. Even though we were there two hours, they were helpful and appreciative of my research (especially a set of 12 photos I’d made (and given to three other doctors) showing how Frank’s infection progresses).

What else… oh yeah, the PICC line. It will probably be in for six weeks… likely followed by another month of oral antibiotics. Frank will have to stop Hockey during this time, as well as no baths or swimming. Just quick, protected showers, and he CAN ice skate, but no contact. The line will be in his arm, and he’ll just have to be careful. If we REALLY want to, and things are going well, we could travel, but I’d have to keep Frank’s antibiotics refrigerated.

Frank is missing his Arizona family and wondering why they won’t be here while he’s having surgery. We’ll have to look forward and plan a trip (I was thinking February, but now, maybe March). We should be able to wait for the PICC to come out, and still catch part of Ren Faire and Spring Time in the Desert – which we love!)

I know I’m rambling, but I am very tired. the ID Dr confirmed that of the three Infection Samples, we haven’t had a good one yet. I have some names of the likely infection and new medicine. We’ll be stopping his antibiotic and actually HOPING for the infection to swell back up… to help the doctor identify all the area that need to be removed and also to help with testing for just WHAT this is… which will guide future antibiotic courses.

So, I’ll get you the technical names a bit later. For now, you know what’s going on and that surgery is planned for Friday.

Choices; choices!

Just when I'd given up on the Salt Lake City Surgeon, he called me. I left a message Tuesday morning, and he called back after 6pm on Thursday. The long-and-short of it is that after the Infectious Disease Appointment on the 23rd, if we have the all-clear to operate, he will operate on the 26th.

We could drive over that morning, do the surgery in the afternoon (about 30-45 minutes) and, if we feel up to it, drive Frank home that night. We'd probably spend the night in Salt Lake though and return the next day. There is, of course, a chance that Frank would spend the night in the hospital... but probably just a night.

Tom already has the 26-29 off of work (a rare thing to have 4 days in a row!) Since it's such a quick thing, Jack could go along with us.

So. Do we go to the highly recommended facility (in Denver) and wait about 3 more weeks for surgery, and a location further away (which means lots of drives for follow-up care this year). OR do we go to the closer facility, that has lost our tests and never follows up punctually, but they can take care of us in a few days, are closer for follow-ups, and the surgery would be on this insurance calendar year (where the deductibles are already paid). Also, in January, Jack's care would be more of a challenge and Frank and I would be away from home longer.

Which would you choose?

By way of Frank's current state... he's turning into the mess I've felt within myself for weeks. Yesterday we started to see yet another flare-up of his infection, which ruptured over the night and today (after cleaning) looks like a pin-needle hole into oblivion. Emotionally, he's even worse. Anyone who knows Frank knows that he has always been very sensitive and intuitive. As much as I think and talk about what's going on, there's really NO WAY to keep Frank in the dark. So. We keep him informed. The result is that since Thursday, when we heard the surgery could be in a week, every night and several times a day he breaks down crying and upset. He needs lots of cuddles and reassurance about whatever his latest concern is about his surgery.

Today we are going to the bookstore to look at the kids books on hospitals. I called around and found out that there are at least three such books in town. Funny thing about living in a small town... little things like going to get a book to comfort your child... they don't have them at the library, and it took 20 minutes for them to find even the few they have. I never thought of all these "little conveniences" that come with living in a city.

Where To Go

At the beginning of this, I contacted Frank's original surgeon. He was willing to consult on the phone and do the necessary surgery. Fast forward two months... when I talked with his office yesterday, the doctor's decided that Frank will need too much follow-up care for him to perform the procedure. Even when his nurse suggested we could stay in Arizona for six months, he said it's not enough. The likely-hood of needing long-term care for emergent and acute issues is too high. Also, if he operated, a closer doctor wouldn't want to provide follow-up care because of liability issues. So, as of yesterday, going to Phoenix is no longer an option.

The good thing about this is that it's made me keep asking and thinking... I just haven't been satisfied with the care out of Salt Lake (actually, I'm still waiting for them to call and schedule the surgery - it's been 24 hours since I called to schedule it). Along the way, I've discovered that The Denver Children's Hospital is one of the Top Ten for Children in America.

Also, my local Wyoming family contacted their pediatrician friend and I contacted my Arizona Ear Surgeon. Both of these people recommended the same surgeon out of Denver. I called his office and explained to the surgery scheduling nurse what we needed, she recommended two surgeons in the office who specialize in more of "facial plastics" than "just tubes and tonsils". Both of these doctors were also recommended by the Wyoming family pediatricians.

So. Frank has an consultation appointment on December 29th in Denver. He still has an appointment in Salt Lake City on December 23rd with Infectious Disease. I'll be calling Denver to see if they want to see him in their ID department or should I keep the appointment in Salt Lake.

As it turns out, Tom has December 26th-29th off (a RARE thing for him!) and so he may be able to go with us... if it looks like the weather will allow us to be back for him to work on the 30th. If a storm is pending though, I'll have to go alone and spend the night.

Ever since Mork & Mindy, I've always wanted to go to Denver (Boulder), although I'd prefer going for a reason besides surgery on my son, I'll still enjoy exploring a new place. Also, I'll have to go there frequently for follow-up care, and my brother's planning to move to Denver this year, so it will be nice to have a need to go there... I'll get to see my brother and his family more often than I normally would. How's that for looking for the silver lining?

I didn't think I knew anyone in Denver, but I've just remembered that a friend of ours whom we lived with while we were expecting Frank, he's from there and his family still lives there. Somehow it makes me feel better to know someone in a strange town... even if I have only met them once!

Right now, even though it's a little further away, I'm feeling much calmer about Denver than I have about Salt Lake.

How to insert HTML Code into your Blogger Layout.

After several attempts, I finally figured out how to insert some tracking codes into my Blog. I've really been enjoying seeing how many visitor stop by, and where they are located. In response to requests on how to do this, here's a step-by-step on how to add an HTML Gadget to your Blogger Page.

1. Create an account with the service you wish to use (my global tracker is www.feedjit.com and my counter is www.amazingcounter.com). You could also use a search engine for "free online counters" or some such search. There are MANY options out there!
2. Set up the service options you want (format, colors, etc.)
3. Copy the HTML code from the service.
4. Log into your Blogger Dashboard (type www.blogger.com, then enter your user name and password).
5. Click “Layout” under the Blog you wish to modify.
6. Click “Add a Gadget” on the area of the page you want to have the item located (side bar / bottom / etc.)
7. Scroll down the list to “HTML/JavaScript” and click the PLUS SIGN (+) beside it.
8. If you want, give your gadget a TITLE.
9. Paste the HTML code from the service in the CONTENT field.
10. If you would like, you may drag and drop the new gadget to a different place in the layout of your page.
11. Click “PREVIEW” near the top of the page.
12. If you like what you see, then click “SAVE”.
13. Go check out the new functionality on your page! :D

Let me know if you add something to your page!

Quick Update on Frank's Infection

We collected another sample last Wednesday. The doctor and I fought a bit on Friday. Monday the results came back... no new growth. The Infectious Disease doctor out of Salt Lake City (whose name my doctor didn't think to get >P) said no need for a PICC Line, stay on the Sulfa, keep Infectious Disease appointment on the 23rd, and plan on a surgery to remove the wire.

I understand the logic behind finding a surgeon nearby (Salt Lake is 3 hours and Denver is 5). I just haven't been able to track one down. I still want to go to the original surgeon(s) in Phoenix. I am looking for a new doctor though, and thinking I'd like to go interview a few, but not sure how I can get in to see them. Plus, what I talk with them about how they actually perform could be two different things.

Feeling like crying because I *should* find a close doctor, but I can't seem to find one I'm happy with. I just want to take him back "home" where I know the people and places. :P

Snow, Mud, and Mopping

I'm so glad my friends tolerate my insanity!

We had about four inches of snow two days ago, today the temperature is suppose to hit about forty. SO... we have ice. And we have snow. And we EVEN have MUD!

Our friends came over to play and visit. Soon, the kids were out back playing, then out front, then out back and front... through my house! When they left, I found trails of mud drying on my linoleum (miraculously, all the mud on the carpet was trapped on a little bath mat by the front door! Yeah!) I thought it was the fault of one child whom I'd remembered walking through the house. I called his mom to ask if he could come over after nap time to help clean it up. She reminded me that all the kids had been in and out and suggested that she send both her kiddos to help with the cleaning up right away.


I had them move all the chairs and stools out of the area. I swept, then I paired them up with the other families child (opposite their normal play arrangement though, so, a 4 and a 6 year old in each "team".) Each team had a wet and a dry towel, but there was fighting over the wet towels and also a lot of waiting, so, I gave them each their own pair of towels. Then, I stood at the counter calling names one-at-a-time. I rinsed out their wet towel and told them where in the room to go work. Afterward, the littlest hung all the towels to dry while the other three put away the furniture.


In very little time the entire floor was cleaned. They had fun doing in. They worked as "teams" with people they don't play with as often. AND, they seem to understand what to do with their shoes next time... leave them by the door!

All this is to say THANK YOU to my friend for graciously allowing me to put her kids to work to clean up the mess they all made in my house! What a great friend!!! :D

Handwritting Lessons with Calligraphy

So, I was visiting my Cousin's on Sunday and heard it mentioned that their kiddos (aged 9-13) were going to have to practice their handwriting over Christmas Break. I got to thinking about it and came up with the following idea.

1. Check out some books from the library, including ones with beautiful Plates of calligraphy.
2. Print out some instructions (here are a few I found online 42 Explore, Calligraphers, Online Lessons, GREAT ONLINE LESSONS, Ideas & Examples, and a Reference Directory to More Sites).
3. Print out some lined pages.
4. Give them some Calligraphy Pens.
5. Let them have fun "playing" with the fancy pens.
6. Get some card stock.
7. Cut the card stock into 8 1/2" x 5 1/2" sheets.
8. Fold the card stock into 4 1/4" x 5 1/2" cards.
9. Let them write "Thank You" in several languages, then use these as cards for gifts received. (Using different languages allows for different letters to be practiced.)
10. Write Thank You according to the heritage of the recipient (a little Genealogy and World History thrown into the mix).
11. Allow them to embellish their cards according to their artistic interest.
12. Encourage them to write out favorite poems, sayings, or verses (these can make beautiful framed gifts when enough time is put into them!)
    

Total cost - under $5 for pens and card stock.

There you go. My Handwriting and Art Lesson Plan all sneakily rolled into making hand-made Thank You cards!

Fit for Life - Notches

Before The Nutcracker schedule got so crazy, we were at the gym a few times a week in the pool, weight training and walking. I've still been busy, just not at the gym. Also, I continue to be aware of what I eat and how much, but I'm far from having a Perfect, Nutritious Diet.

Last March when I realized I'd gained weight, I was in a size 16 pants. I got down to a 13, then back up to a 16. Last month I went back to 14. This week, I was able to get into some of my 12's!

YEAH for ME!!!

In March, I bought two new belts, knowing they'd help show me my progress. Today, I found that there wasn't a notch where I needed to go. Upon further examination, I saw that I've gone down three notches already, and need to have some more punched in at a smaller size!

YIPPIE!!!

Oh yeah! Last month I also started making myself go to the opposite floor EVERY TIME I have to use the bathroom (during the day). While doing it, I pay attention to working my muscles and proper posture. This is forcing extra stairs in an easy, repeatable method.

It's great to have progress bit-by-bit.

War Paint

I haven't said much about it lately, but in this case it's not the "No News is Good News." Instead it's "No News is No Change." Basically, Frank's wound remains the same, as does the Cavalier and Unconcerned attitude of the Doctors and other Medical Staff I've been interacting with.

Once again... A picture that has nothing to do with the text in the post!
You can't see ANY SORT of a family resemblance between these two brothers, can you!!?!
Can you just imagine if they had the same coloring!?!? They'd look like carbon copies of each other! :D

Watch out! I'm preparing to go on The War Path again tomorrow regarding Frank's Infection, Care, and Treatment. In preparation for This Week's Battle, I've just spent an hour on the phone with my Father-In-Law, who's been a nurse for something like 40 years, many of them involved with Infectious Disease Control. He was giving me feedback, encouragement, and terminologies to use and remember as I work towards some change in the right direction with Frank's Infection. He's also been emotional with me over our love and concern for Frank and getting him the best care possible. All of this was SO HELPFUL and APPRECIATED!

At this point, I'm no longer excessively emotional (crying or screaming), I'm just deflated and determined.

Wish me luck in my quest... my goal for tomorrow morning: Get an Appointment with a Pediatric Infectious Disease Specialist for THIS WEEK; preferably in Salt Lake City, possibly in Denver or Phoenix, but hopefully in Salt Lake.

Pencil Sculptures

While making on a few new Job Chore Cards for my boys, I was looking for free Clip Art for a "Sharpen Pencils" card. Take a look at some of the intriguing pencil sculptures I found:

72 Pencils by George W. Hart

72 Pencils is a geometric construction of 72 pencils, assembled into a work of art. Restricted to a signed limited edition of twenty-five, each shares a common form, yet each is unique. The form is an arrangement of four intersecting hexagonal tubes that penetrate each other in a fascinating three-dimensional lattice.

Colorful Pencil Sculptures by Jennifer Maestre

In order to create the pencil sculptures, hundreds of pencils are cut into 1-inch sections. Then they are drilled with a hole in each section so that they resemble beads. Next they are sharpened and sew together using the peyote stitch technique.

Here's an article about Jennifer Maestre's work.

So. What common, household or office object are YOU going to do something CREATIVE and OFF-THE-WALL with? :D

Nutty Cracker

Jack made his on-stage debut tonight.


I have been so tired and frustrated by the process of preparing for this Ballet. I had NO IDEA the work and effort that it would require. I have been ready to walk out on more than one occasion. Yesterday, I found myself at the Founder's place of business, speaking with him for quite some time about my complaints. I came away from the meeting with nothing short of excitment. The meeting went better than I could have imagined!

There were a lot of things we weren't told about, but after tonight's show, one thing we should have been told stands out above all the rest... "It's worth it!" Seeing your Little One perform on stage, in front of a live (paying) audience is worth it.

Am I a total and complete sap because I teared up watching Jack on stage? Maybe. But doesn't being a Mom and being a Sap go hand-in-hand?

Here's an update to my previous post on the upcoming performances...

Wednesday 3 December 2008, 7:00 pm
Thursday 4 December 2008, 7:00 pm
Friday 5 December 2008, 7:00 pm
Saturday 6 December 2008, 7:00 pm
Monday 8 December 2008, Matinee
Thursday 11 December 2008, 7:00 pm
Friday 12 December 2008, 7:00 pm
Saturday 13 December 2008, 7:00 pm

tickets = $9, seniors = $5

If you can make it, I'm certain you too would enjoy watching Jack, not to mention enjoy some Culture here in Southern Wyoming!

Game & Watch Sounds

Tom has a new work vehicle... like it was delivered to him two weeks ago with under 20 miles on it (he already has almost 1,500!) It's a 2009 Chevy Express Work Van.

Anyway, tonight was my first time driving it. When I used the turn-signals, I chuckled to myself at the sound they make... it took me a few seconds to place the sound... it's exactly the same as when the eggs are rolling down the chute in Nintendo's 1980's Classic Game & Watch Mickey Mouse Game!


This was my FAVORITE of the Game & Watch video games my Grandad brought back from his business trips to The Orient. He also brought us Parachute, folding Donkey Kong II and Greenhouse games.

I never could get my Mom to part with the original Mickey Mouse, so, a few years ago I went to trusty ol' eBay. I bid and WON... but was disappointed when all I received was an original INSTRUCTION MANUAL... no game. Don't you HATE IT when they auction shows a picture of one thing and lists text for another??!? I eventually won a functional game for myself, which sits prominetly on display on a shelf in my sewing room / studio.

First Song is Less

Tom is a radio-sing-along, shower-singer. When I pick up the phone for Tom, I never know what song he might be singing.

Yesterday, Frank started singing his first full set of lyrics...

one two three like a bird i sing cause your givin me the most beautiful set of wings im so glad your hear today cause to marro i might have to go and fly away

Tim McGraw Lyrics Less Lyrics

When I looked it up, I found that the song is "Last Dollar (Fly Away)" sung by Tim McGraw ("Let It Go" Album).

It's neat to hear Frank going about singing a song. He's a happy boy and the way he sings this brings the joy to our ears. :D

Microbiology

We started Frank on Sulfa, a very old sulfur based antibiotic. We continue to treat the wound topically three times per day, covering it with Bactroban.

This photo has NOTHING to do with this post!
I just thought you might like to see the boys with their friends on our trip a week ago (or was it two?) to Salt Lake City. They had a great time playing in a field and with the drainage pipe.

This report will mean more to some of you than most, but I have so many nurses in my Circle of Life, that I thought you might just like to peek at the details...

Wound Culture (Aerobic)
ISO1 (Final)
Coagulase Negative Staphylococcus To Furter Be Identified
Staphylococcus epidermidis

Gram St (Final)
Moderate WBC
No Organisms Seen

Clindamycin (CD) R
Gentamicin (GM) <=1 S Levofloxacin (LV) 4 R Linezolid (LNZ) <=1 S Oxacillin (OX) >1 R
Penicillin (P) >1 R
Rifampin (RIF) <=0.5 S Vancomycin (V) 2 S

So. I actually wish I understood more of what this report is saying, but I do understand that Frank has a Superbug, and the Arytomycin we've been giving him has likely been feeding the bug rather than killing it. :P

Two weeks (or so) on the new Sulfa and then a follow up. Surgery is pretty much a definite, once we clear up this infection.

We are blessed that he remains strong and healthy and feeling well... just the site of the infection that we are trying to clear. Even the site feels good (unless we're cleaning it, then it's uncomfortable for him).

Frank has been having me tell him stories about his previous surgeries. He also likes finding his previous PICC Line scars (one on each arm). I think it helps him to know that he survived all this before... and he doesn't even remember it!

Last night when I told him he had a "Superbug" and he would need more medicine before surgery, he said "Well, that's a good thing!... I can take medicine and wait longer to have my surgery." I LOVED his happy attitude toward the fact that we'd made some progress!!!

Superbug!

At 4:15pm yesterday, the final results of Frank's lab-work came in. He has an Unidentified Staph Infection which is multi-drug resistant (ie: it is resistant to MANY common antibiotics). The local doctor isn't "blowing me off", but he's not trained in this and wants us to see an Infectious Disease Specialist.

I did call back and tell the nurse that I WILL travel for to see the Specialist, but that it is Incovienent, Expensive, and (I feel) Unnecessary. I just don't see the need to drive Frank three hours just for the doctor to look at the lab report, reveiw the CaT Scan, confirm with other doctors that there is an infection, and then just shake my hand and glance at Frank.

So, we are waiting to hear when and where (phone or in person) that appointment will be.

Embroidery Lessons

Tomorrow I'm starting Embroidery Lessons at the Mom's Time Playgroup I've put together.

Wait a minute! I don't think I've ever told you about the Group I created.

Last November I started inviting Mom's with young kids to meet each week. The idea was to give Mom's a time to craft and visit while the kiddos played. We wound up with three Mom's meeting all Winter and Spring. Over the Summer, we were meeting at Parks and had plenty of room for the kids to run and play, and the group started to grow.

As Fall approached, I realized our group had outgrown most of our homes. I had to look for (and found) a bigger (free) place for us to meet! {Thanks to the free meeting rooms at our Public Library!!!}

We currently have 15 mom's on our email list, and on any given Friday, we'll have 3-8 Mom's, plus all their kiddos. Tomorrow, we're expecting THREE new Mom's to come.

I'm very proud of the way this group is going. It's relaxed and casual and just what we all need at the end of our week!

Getting back to the original heart of the group... a time for Mom's to craft... some of the ladies were asking about Embroidery. I said it "was easy" and "I could teach" them. I've gathered supplies to put together a few kits, and tomorrow, I'll start them out.

We're going to trace their kids' hands and then stitch them on Flour Sack Towels. Very simple, but fun. They can keep them or give them as gifts. If there is more interest, I'll keep the lessons and projects going.

I feel a little unprepared because I don't have any written materials to share with them. I've been looking for a pamphlet or leaflet, but haven't found anything. I'd thought I'd put together something myself (from online resources) but didn't get around to it. So. Tomorrow, I'll go with materials in hand and knowledge in head and let the rest work itself out!

The Infection's Back

Frank's infection has returned and it's "Bigger than Ever!"

This morning the site swelled back up. I took him to the local clinic. I cleaned the wound and opened it back up. The Lab Tech delicately took a small sample while saying "we don't do this, the doctor does"; then refused to give me any more cotton swabs for me to finish cleaning the site, saying and "we don't have any Q-Tips!" Let's just hope this sample gets properly cultured so we know what we're dealing with!

Frank is going back on the same oral antibiotic that we used three weeks ago. I insisted on only a six day course though because in five we should have results from the culture, at which point he'll likely change medicines.

I told the doctor my expectation was "that Frank would have a PICC Line in next week and ... surgery before Christmas." The Doctor said this was a realistic expectation and time-line.

Here's my question for you... do I go back to the original surgeons, and "my home" in Phoenix for this surgery or do I find and use a new doctor closer to home (in Salt Lake City)?

Either way the doctor in SLC would have to do the follow-up, post-operative care.

I have support (family & friends) in both cities.

I trust the Phoenix doctor's implicitly.

Frank's Dad is closer to SLC.

Frank could return to his own home and bed and toys sooner here in SLC.

In Phoenix, Jack would be closer to me.

In SLC, Jack would be in Wyoming. I have only been away from Jack twice at night (he's almost four). Jack has never been in day-care or pre-school.

Jack doesn't "need" me much, but I have a HARD time being seperated from him (or Frank).

The surgeon doing follow-up care understands the case better if he also performed the surgery.

I'm having a very hard time separating emotion from this. What would you do?

Bent Wires

Last week we discovered that the sample collected from Frank's wound had been lost. Since then, we cleaned out the wound through Saturday, but then it was looking better and better... just a wound with a scab healing. Today, it's a little red and swollen... I'll keep a close eye on it. If it is reinfected, I'll trot Frank over for a collection at our local Medical Center (where an order is waiting on file.)

After looking at the CaT Scan again last week (with a second doctor) we noted that one of the stainless steel wires (on the left) looks to be encased in bone... which was the original plan. The other wire, looks like it has untwisted and is still above the bone. It actually looks (to me) like a staple that has been pulled out of a piece of paper... you know, how one side of the staple is raised up a little. That's kind of what it looks like is going on with Frank's "hardware". Knowing this, that a piece of metal rubbing on tissue is (of course) going to irritate the area, I understand that the only solution will be to remove that piece of the wire.

It was also interesting to learn that "hardware" can infect DECADES after a surgery, and that after removing it, the area usually heals quickly and without incident.

All-in-all, healed or more procedures being needed, I am SO MUCH calmer about it all. I know there's little I could have done to prevent this and that whatever is going on is treatable.

Sending Out an Invitation

Jack has been practicing every week for two months to be in a Nutcracker Performance. Now, he's practicing a few times a week. The ballet will have five performances, plus the two dress rehearsals. I thought I'd mention them now, in case you might like to come and see him.

Performances:

Wednesday 3 December 2008
Friday 5 December 2008
Saturday 6 December 2008
Friday 12 December 2008
Saturday 13 December 2008

Dress Rehearsals:

Monday 1 December 2008
Tuesday 2 December 2008

So. If you'd like to watch Jack as a Soldier in the Nutcracker, in his On-Stage Debut, please mark your calendars now!

Also, let me know so I can find out about getting you tickets. :D

Emotional Words

So. An interesting thing about the written word is that you have to express emotion through it, without the use of volume and animation and tone. You could just say "I feel ____." but I think writing is so much more powerful if you can help the reader to FEEL what you FEEL. I don't know if I can do this today, but I'll give it a shot.

Monday I was suppose to hear back from the Doctor in Salt Lake City about Frank's cultures. I didn't. I called them. There were no results in the computer. Tuesday I never heard from them and forgot to call myself. Yesterday, there were still no results in the computer, so I had to ask if we could contact the lab to check on the status. I was given a phone number. I spoke to a very helpful Microbiology Lab Tech, Andrew. He could see Frank's name in the computer, and NO RECORD of an Lab Work. Andrew offered to call the ENT Clinic and called me back.

"I don't have very good news" Andrew said. The doctor remembers collecting the sample. The nurses remember taking it down. And then nothing. Nada. So, it's been lost (physically or by misspelling in the computer) or damaged. No matter what, we probably won't recover that information.

Frank's wound looked and felt better on Sunday and Monday, but Tuesday, it started looking and feeling worse again. Presently, there is no infection coming out... which is a good thing for healing, but a bad one for answering questions.

The nurse and doctor never thought to follow up or bothered to call me without my first contacting them and pushing the issue. The doctors (WY ENT and SLC ENT) were both very kind to speak with me on the phone (or in person) yesterday, but I had to make the calls and leave messages including the phrase "please have the doctor call without me having to BADGER them!"

Both doctors thought we could "empirically" put Frank back on antibiotics. Then they switched and said I had a good idea to wait for any more infection to turn up. So. That's what we'll do. Keep cleaning the wound regularly and IF more infection starts to come out, I'll take him right over to our local clinic's lab, where an order is waiting to collect a sample and test it.

We're six weeks into this and still don't have any conclusive answers on what's going on. We'll probably never know what exactly caused all this.

How would you react?

I spent seven hours yesterday with a passionately raised voice and or crying.

I feel so frustrated, worn out, worried, and just spent.

Today we're "logging out and powering off" (computer and phone). I'm going to spend the day with the boys, cuddling, reading, watching movies, and playing. No school or errands or "have-to's". We're going to play "hookie" and Ditch Life today.

Sleepy Bonehead

I ask Jack if Daddy was up yet and he said "No."

I ask "Is he a Sleepy Head; a Lazy Bones?" to which Jack said "He's a Sleepy Bonehead!"


I thought it was a funny mix-up. :D

Waste Not, Want Not

Tom has a snaggle tooth.

Ever since I met him, he takes scraps of paper and folds them to a point, or grabs a business card and swipes it between his snaggle tooth and other teeth. He does this after he eats - every time.

In his whole life (46 years), Tom has had four TOTAL cavities and fillings, all of them minor. While we were in California we went to the dentist for our teeth cleanings. Tom had something like EIGHT new cavities... including one in his snaggle tooth. Since the Tortuous-Two-Dentist-Four-Hour-Filling on his precious (he got it when his lower jaw was broken at a bar on his 21st birthday - ah... the memories!) snaggle tooth, no paper will fit in between the teeth. He now needs to use dental floss.

After dinner tonight. Tom ask Jack to go get him some floss... Jack looked like a deer in the headlights, because he didn't know what or where the floss was. Fast as a Flash, Frank ran upstairs and returned with a little piece of floss for Tom... a VERY little piece.


From across the room, I guessed it was 7 or 6 inches, Tom said 5. I measured. I was right. It was 6 5/8".

I LOVE it when I can quantify how right I am!!!

As Tom said "Waste not, want not."

And if you're wondering, 6 5/8" of dental floss was JUST enough for Tom to wrap around his fingers and swipe through the snaggle tooth. :D

Cleaning Improvements

I've been cleaning Frank's wound twice a day (three times just hasn't been happening).

Yesterday morning, we had a hard little piece of infection come out, then last night it started to "look different". This morning it looks very different... and MUCH BETTER! The red-pink area is smaller. There is no swelling. And when I soaked the scab off, there was just a small dark red indention, not an open "hole" with pus coming out. It looked like when a scab gets pulled off, just a dot of skin healing. Also, the past several days, when the scab came off, and I'd put a dot of peroxide on, Frank would scream because it hurt. Today, he didn't move. I ask if he could feel it and he said "No!"

I'm remembering that my Grandad use to tell me about a wound he had that a nurse would soak off his scab daily, to avoid scarring. The specialist in Salt Lake City mentioned that Frank would have a scar from this wound. I wonder... if I keep soaking it with peroxide, then putting the prescription antibiotic ointment on it... what are the chances of reducing the potential scar on his face? What about a homeopathic approach and Lavender Essential Oil? Would putting that on instead of the prescription ointment prevent scaring?

I'm so glad that I feel like all I have to worry about is the scar and not surgery or other problems. It just looks THAT MUCH better!!!

Yeah!

Virtual Pampered Chef Show

In the past I have been an Independent Consultant for The Pampered Chef. After many requests from friends and family, I'm hosting a Pampered Chef Party! Since my friends in Blogland can't come over for the Open House today, I'm hosting a Virtual Show.

Right here.

Right now.

Here's the way it works...

1. Look online.
2. eMail me (leavemealone@yours.com) by 8:23pm MST Sunday.
3. I'll randomly draw a winner to receive 10% of their entire order!

Now. It's time to get STONED!

The November Special is 20% off Unglazed Stoneware!!! This is just in time for Holiday Cooking! You can order as many cookie sheets, bread pans, muffin pans, fluted stones, bar pans, and pizza stones as you want... all at 20% off!

If you REALLY want to go crazy, you could host a show of your own and get 60% of a couple of stones!!!

If you'd like a piece of stoneware, for yourself or a gift, I have some great recipe collections for the Mini Loaf Pan, Stoneware Fluted Pan, Hot Dips (for Mini-Baker) and Pizza Recipes (for Large Round Stone, Large Bar Pan, or Round Stone with Handles, Large.) I am happy to email these recipes to you!

Remember to email me your order (product number, item name, and your contact info) by 8:23 tomorrow night... for your chance to win 10% off your entire order!

Getting a Chill On

Can you believe it was just last week that I snapped these pictures?


Somehow, I knew I'd need to document some of our last "nice" days of the year.


With the sub-freezing temperatures and "Wyoming Winds" of the past few days, I can't believe I took these just last week either!

We Know that We Don't Know

We now know that we don't know what the Source of Frank's infection is.

The contrasted CaT Scan told us that the infection is not in the sinus cavity or intracranial... these are VERY good things. It could still be in the bone or tissue, it could also be Frank's body rejecting the Stainless Steel Wires that were put in five years ago. The Pediatric ENT was leaning strongly toward the posiblity of Frank's body rejecting the metal wires.

A culture was done on the infection. We'll have the results Monday. We'll probably change his antibiotic once it's known what type of infection this is. The new antibiotic could be oral or intreveneous... in which case the PICC line could be installed here in our town.

We're not out of the woods yet. We could still be facing surgery in two to six weeks.

In the meantime, I have to clean his wound out three times a day. Frank is very patient. He gets the supplies out and is curious about the cleaning process.

Appointments

After the wound opened up, it leaked for about 18 hours. Currently, it's red and nearly flat. The local medical facilities in Wyoming couldn't perform the necessary imaging, so, we have appointments this morning at the University of Utah Medical Center and Primary Children's Center to have a 3D CaT Scan and meet with the Pediatric Otolaryngologist (ENT).

Frank and I stayed the night at a friend's in Salt Lake City to make this morning easier, and another friend has Jack with her (who also happens to be on a trip from Wyoming to SLC!)

Will let you know what happens.

Spider Bite Election

Ironically, on this election day, I'm more concerned about a spider bite on my son's dorsum (bridge of his nose) than I am about whether my candidates won or not. This is pretty wild to me because I was up all night at the last presidential election, giving myself a migraine, worrying about the results of the election. This year, I've been up for the past two hours cropping photos of Frank for the past five weeks.

Anyone who personally knows us, knows that on Frank's first birthday, in 2003, we discovered a birth-defect that required surgeries and many years of treatment for Frank. The treatments went incredibly well and after five years we were given a "clean bill of health." Regrettably, there is still sensitivity at the site where a donor bone was put in... at the bridge of Frank's nose. The bridge of his nose, and half of his right eye socket came from the femur of an unknown cadaver. Whenever Frank gets bumped or bonked at the site, there is swelling and often redness. We understand that this is part of the "assimilation process" for his "bone matrix".

Unfortunately, on our trip to California, Frank woke up on his 6th birthday with a spider bite dead-on the site of his donor bone. We've been watching and waiting. After 2 1/2 weeks I took him to a doctor. At four weeks, he was put on an antibiotic. Now, he's got a nice crater from the infection coming out. It's gross. It's scary. I don't like it.

If you're interested, here is the information I've been compiling for the doctors, followed by some yucky pictures.

Wednesday 1 October 2008
• Wakes up with small pink-red area on right side of dorsum of nose.
• Looks like a spider bite.
• Progresses through “normal” bite look:
o Redder, then pinker;
o Bigger, then smaller.
o Light pink with scaly skin.

Thursday 15 October 2008
• Looks like a new bite at the exact same spot.
o Site swells back up.
o Entire dorsum swells into both eye orbits.
o Red.

Saturday 17 October 2008
• Visit PA at Medical Clinic.
o Could be body didn’t get rid of all poison first time, so, second reaction.

Monday 19 October 2008
• Visit another PA at Medical Clinic (well visit)
• Bite site looks a little better.
o Swelling in orbits gone.
o Now pink and fluid filled.

Monday 27 October 2008
• Red again.
• Swollen at site of bite.
• Black dot right in center.

Tuesday 28 October 2008
• Black dot still there.
• At lunch, Frank wipes the area, and the black dot is gone. Followed by:
o Yellow pus.
o Swelling down.
o Blood.
• Cleaned with peroxide.
• Covered with Neosporin and bandage for the afternoon.
o Bandage removed at bedtime… skin irritated from adhesive.
o Site looks flatted, but with little dark spots.
o Light red.

 
Wednesday 29 October 2008
• See "local" specialist (ENT and Facial Plastic Surgeon).
• Begin antibiotics.

Saturday 1 November 2008
• Swelling down.
• Scaling begins.
• Purple color (red and pink gone).

Tuesday 4 November 2008
• Red and swollen in morning.
• Swollen more in evening.
• Dad touches it and milky-white pus mixed with blood comes out.
o About 1/8” cavity present.
o We push around the area and much pus comes out.
o While cleaning (with peroxide) the area begins to swell again.
o Covered with a clean, dry bandage.

By the way, the risk here is to the sensitive new bone... an infection in it could mean several more surgeries... to remove infected bone, then wait for months, then put in new bone. It could be very bad. Very long. Very expensive. Very traumatic (for me!)

Today, before it started leaking, I'd already called the local ENT/Facial Plastic Surgeon (whom he saw last week) to schedule a CaT Scan. I never heard back. Tomorrow, it will be my mission to contact the doctor and schedule (if not have) the scan... we need to find out if this infection is in Frank's bone. :(

An Amazing Thing!

It's 40 degrees Fahrenheit out, and I'm walking around - COMFORTABLY - in just a VERY thin, long sleeve t-shirt and a medium-weight fleece vest. I also have on jeans and shoes and underclothes... but no coat. No mittens. No gloves. No scarf. NO HAT! I'm comfortable!

Who woulda thunk?!?!?

I'm happy to be aclimating to the cold a little faster with this move than I have in previous moves.

I'm also happy that it's warmer than last year, our highs have been 60-70 for several weeks now. October was about 30 degrees warmer (so it seems to me).

Call Out the Fashion Police!

If ever there is a time to call the Fashion Police...


...I believe it's when a three-year-old chooses to dress themselves.

When else in life can you get away with wearing camouflage, tie-dye, and (too small) stripes at the same time?

Halloween Check In

Costumes completed!

YEEEEEAAAAAAAAAAAAAAAAAAAAHHHHHHH!!!

This morning I made the Satchel Bag for Jack, finishing it minutes before leaving for our playgroup's Halloween Party.



Isn't it funny how all the little kids are looking every which way? They had no clue what they were doing there, but I was pleased with how well they were sitting. I wished I'd had my voice to tease them into some smiles, but it's still fun to see them doing their own things.

Here are the boys with our homeschooling-neighbor friends.


The Monkey costume is from Old Navy. I was in charge of the other four costumes... getting Amy's help with the gloves and hats for the two Ash costumes, and teaching her while making the Witch. That was sure a lot of sewing to get through!

I'm most pleased with Jack! He looks so stinkin' cute in his Indiana Jones costume!


I bought each of the boys a surprise accessory which was waiting for them this morning... A Light-Up Crystal Skull for "Indy" and Pikachu for The Pokemon Trainer! I told Tom that "costumes are all about accessories... what's Vader without his chest box, belt or light saber?" Tom smirked.

Even with the $15-20 each on the boys "accessories" I made both costumes for under $50. We couldn't have bought one of these costumes for that price! I'm so pleased with myself... and modest too!!! ;P

Frank was so happy with his Pikachu!


I'll get some better costume pictures of the boys a little later, especially all the details that you can't see here on Jack's costume, but for now, I thought I'd share the beginnings of our fun Halloween. :D

An Update from the Nearly-Mute Girl

I'm feeling better still today... not so congested.

Tom took yesterday off, but today he's not had ANY calls... so, he's been able to spend the whole day playing on the computer... I mean resting!

Jack and Frank seem to be fine. Hard to keep tabs on their rambunctiousness while nearly Mute myself.

As of this morning, I've finished sewing FOUR Halloween costumes (pictures of all the kiddos will come after they wear them tomorrow) and am about 1/4 done on the second sock to make my FIRST PAIR of socks.

Also, I made my family's Zucchini Brownies Recipe and mixed in some chips / Reese's Pieces. They all sank to the bottom! My neighbor told me I should bake 1/2 the batter for 5-10 minutes, and then sprinkle the goodies on, and top with rest of the batter. I guess every so often, I need to have a cooking attempt flop! Oh well! You live and learn and they still taste good.

I'd thought about carving our pumpkin this afternoon, but it's a VERY tall and skinny pumpkin and I just don't feel like I have the energy at the moment, so, we'll see!

How did October get over? I have so many fun Halloween-y things to do and I did so few of them. I never even got out my Halloween decorations, and I know right where they are and I can reach them... it just didn't happen. And quilting, I have plenty of projects to do for Halloween that involve sewing... but wait, I did sew, and sew, and sew! Costumes times four kids! Se-la-vi (did I spell that right).

Oh yeah, and today's Heather's birthday! I hope you're having a GREAT DAY!

HAPPY BIRTHDAY HEATHER!!!

Suzy :D

Recipe - A Couple O’ Bowls of Chicken Soup

Since we've been feeling yucky, I've come up with this Delightful Little Diddy. It's Just Enough Soup for the day, without making you feel like you'll be eating soup all week... even if you will! I know it's simple, but I'm just delighted by my discovery of it and wanted to share with you, for when those inevitable sniffles come. This is simple and quick enough that you can make it even when you feel like... well, when you don't feel well!

A Couple O’ Bowls of Chicken Soup

This is simple and quick enough to make, even when you’re not feeling well. When you’re not feeling great, this makes “just enough” soup, without having buckets of leftovers! I use leftover chicken and pasta if I have them, otherwise, I use frozen components. If your chicken is seasoned, you won’t need as many of the extra spices.

Ingredients:
4 c water*
4 t chicken bouillon
1 chicken breast
½ c carrots (frozen) or other veggie
1 t parsley, dried
2 t onions, dried chopped
1/8 t celery salt
1 pinch garlic powder
2 pinches ginger powder (thanks to Celise's comment!)
4 oz pasta (dried)

Directions:
1. Put water and bouillon in sauce pan on high heat; bring to a boil.
2. Using microwave, defrost frozen chicken breast just until it's soft-frozen, then cut into small bits (or cut up cooked meat). Drop it in the pot.
3. Add veggies of choice and seasoning to taste.
4. Bring to boil again.
5. Slowly add pasta. Return to boil. Cook however long your pasta calls for.

Variations:
1. When I use broken (chopped) angel hair pasta, this feels like a Hearty “Lipton Cup O’ Noodles”.
2. Substitute rice or barley for the pasta.
3. Add another cup or two of water (plus bouillon) for when you need the broth, or just go easy on the pasta/carbs!

* We save our vegetable broth (from whatever veggies we eat) in the freezer. If you have veggie broth, you may substitute it for the water.

2-3 Servings
Prep: 5 min, cook 10-20 min (depending on the type of pasta)

Let me know if you try this and how you like it. :D

PS: The "egg yolk looking things" in the bowl are sliced carrots! :D