Be Joyful in hope, Patient in affliction, faithful in prayer. Romans 12:12

Living in Jophies Jungle Headline Animator

Saturday, November 15, 2008

SOOC Saturday..........

Christmas Piggy Toes


I have this fetish. I can't seem to get enough of them.

Never .......

It's maddening really. I guess it could be worse. It could be something big like beds or couches in which case I'd never be able to afford them nor would I have the place to store the bazillion that I would just have to have.

Oh well they are only socks afterall never taking up too much space and perfectly harmless. Unless of course you would actually need to use the "other" drawers in your dresser?

But seriously who can resist a brand new snow white pair or better still those adorable little piggy toes in those adorable little sockies? Not me!

Now to go make sure Jophie and I have enough snow white comfy sockies in those drawers! :0)

Have a wonderful Saturday!

Trina

Slurping Life

Monday, November 3, 2008

Looky what we got!



http://www.divinecaroline.com/awards/1425#badge_window
Wow! I'm so excited! Looky what we got.....
Now we neeed votes so hop on over and vote for us please!
We have till the end of November.
This could be fun! :0)

Trina

Friday, October 31, 2008

SOOC Saturday..........

I love flag shots when its windy especially if you can catch the sun in just the right spot. I honestly had a really hard time choosing just one of them....

Slurping Life

Trina

Saturday, October 25, 2008

SOOC Saturday..........

Slurping Life


This was from an impromptu trip to the great outdoors otherwise known as our back yard or rather Gods Big Back Yard which also happened to be the bible school theme this past summer! ;)


Jophie has truly found this new facination with the outdoors. He loves the sunshine and the breezes on his face however, his biggest facination and honestly has always been is looking up into the trees or rather up through them and, the closer you can get him the better. He even used to do this as a baby when he was small enough to lie under our Christmas tree. He'd look up through the branches for hours with the tree lights on of course!

Speaking of......

Our tree goes up the day after halloween! Yep you read that right!

Let me just say it one more time in case you think your eyes have failed you.

Our tree goes up the day after halloween! ;0)

Jophie loves Christmas and I make certain he can enjoy those lights as long as possible each and every year.

You never know when it will be the last.....

Let your hair down!

Forget all the rules and just ENJOY! :0)

Trina

Sunday, October 19, 2008

SOOC Saturday

Slurping Life

Damaged Goods or Masterpiece?

It's all in the eyes of the beholder....

Psalm 139: 13-16

Trina

Wednesday, October 15, 2008

A Day in My Life..........



And so my day continues on......

I'm still trying to figure out when it ended or when it began? Could be they are bumping one right into the other?

I'm thinking it started bright and early or rather dark and early at 1:30 a.m. sharp! Jophie needed a good hoover(suction for those of you who may not know me just yet). So, a good hoover and a very soggy bottom was calling my name. By 2 a.m. he had a dry bum, dry/clean pad on his bed and was repositioned to his favorite side. I often wonder does he feel like a pancake with all that flipping? ;0)

I had just enough time to smash all his meds and put them to soaking before the timer sounded for the umpteenth time. Well maybe not that many but when that thing heralds you every 20 minutes day in and day out it really does seem like umpteenth!

The next 30 minutes I actually spent in front of the computer. In a chair. Not moving. Ahhh sweet relief to be off my tootsies if only for a moment. 3 a.m. rolled around in what seemed like a few seconds! Time for those meds I put to soaking. I shoved his meds in then hooked him up to his water infusion. Set the pump and turned out the lights so "maybe" he'd think it was really bedtime rather than "happy hour" at party central! haha

The next 2 hours I spent working on Meals 4 Wheels "stuff" and ya know what? Here I sit more than 24 hours later and I'm STILL working on M4W "stuff". There really has to be an end to this somewhere right?

5 a.m. and oh my I think I might actually be heading towards some sweet slumber. I think. Before anything could go wrong or before Jophie decided he needed a party partner in crime, I ran like a madwoman to close the house down for the night!

  1. TV's off! Check!
  2. Lights all off but one! Check!
  3. Front and Back doors all locked to keep out creepy things! Check!
  4. Jophies monitor moved so I can watch it with my "one eye open" sleeping habits! Check!
  5. One last peeky at Jophie. He's fine! Check!
  6. One last peeky at the computer to make sure nobody needs me! ~Waves to Tia!~ Check!
  7. Bathroom duty! Check!
  8. Turn on fan! Check!
  9. Jump in bed! Check!
  10. Read my bible! Check!
  11. Ahhhh sweet slumber! Check!

Time check before I close my eyes revealed 5:30 a.m. Ahh a bit earlier than my norm. Yay!

9 a.m. I hear the rap tap tappping on my window of Jophies nurse. It's the ONLY way they can wake me up. ;) I staggered to the door and let her in then staggered and stumbled my way back to my bed for another 2 hours of sleep! Yay!

11:00 a.m. Bathroom duty calls. I'm still sooooo sleepy and have been for a few days now. I just can't seem to get caught back up. Such is life. Before I open my door and enter the world of the living I spend about an hour on the computer checking emails/checking on friends/answering questions/working on M4W again all the while trying not to give myself a concussion each time my head bangs on the keyboard.

12:00 p.m....I think I'm hungry which really means "let me think about what I might like to have for the next few hours all the while lets find something crunchy to munch on to help me think better" Not the best thing to be doing but if anything the "crunch! crunch! crunch!" of my little snack is keeping awake and that my friends is a good thing!

1:00 p.m. ... I've finally decided on what sounds good to eat so I send the nurse for a few things from the grocery store and to pick up a sandwich. Mind you my food situation even though its been decided has still not made its way to hands much less my mouth.

The timer goes off shortly after the nurse leaves for our goodies which means I now have to figure out what part of his schedule he happens to be at. Meanwhile I'm still rubbing my bleary eyes and trying to clear the cobwebs from my brain. Gave Jophie some carafate then hooked him up to his water infusion. Set his pump and now its workin for me! ;0)

Walked out on the deck just so I could say I stepped outside and to feel the nice fall breeze. The smell was nice too! Ahh fresh air! Nurse gets back around 3 p.m. just in time to fix Jophies meds and NOW I can eat!

Jophies gets hooked up to meds and food and the nurse and I try to decide what fire would be the most important to put out before he needs his trach cleaned. I made a few phone calls to medical supply places. I had tons more calls to make but I was spent after those. Theres always tomorrow! ;0)

4:00 p.m....Time to get things ready to clean Jophies trach and by 4:30 p.m. we are doing just that! Cleaning his trach and changing the trach collar.

5:00 p.m. Nurse leaves and Jophie and I are back to wingin it alone again. Jophie needed flipped/changed again along with the soggy wet bed pad. I turned on his pumpkin light then sat down to flip through the channels. Flip! Flip! Flip! I suspect I'm a bear to watch tv with! Flip! ;0)

6:00 p.m.....Time for water infusion. Set his pump and drew up his carafate then set timer for carafate. Bathroom break again. I sometimes forget that you know ;)

7:00 p.m.... Gave Jophie his carafate then back to the computer to work a bit more on M4W.

8:00 p.m.....Back to tv to watch some of my programs. Well "try" to watch is the key word. Most days I'm more like Jiffy Pop than anything! 8:30 p.m. time for Jophies meds to be smashed and put to soaking. Flip Jophie/change diaper and bed pad again. After I got him settled on his least favorite side the meds were ready.

9:00 p.m....Shoved his meds in and started his tube feeding. Set timer to keep track of his 20 minute slow bolus of his formula which has just made my stomach rumble. Ah yes food. You know your hungry when your belly rumbles for Novasource Pulmonary! LOL

I mosey on into the kitchen and stare into the fridge trying to will something to jump out and fix itself. Didn't happen. Peeked into freezer and nothing up there was very helpful either. I guess I'm just gonna have to cook it myself.

Hmm....Hot dogs are lookin pretty tasty about now especially since I know I can slap em in the microwave and they can be on a plate with mustard in a minute flat! Hot dogs with mustard it was! Grabbed me some punch flavored water and a pill for ME this time.

9:30 p.m. I'm sitting in my chair Flip! Flip! Fliping! the channels and munchin on my hot dogs. Ahhh another bit of rest.

10:00 p.m....Tossed my paperplate in the trash and washed up the few tubes/syringes/bottles that had accumulated of Jophies. Sterlized some water and filled Jophie some bottles of water up for the next day. Straightened up a bit and thought about a shower. Just thought about it mind you. ;0)

By this time its nearing midnight and Jophies all Mr. Soggy bottom U.S.A. again! Changed that soggy mess including the bed pad then gave him another pancake flip back to his favorite side! Gave him another dose of carafate and finished up his tube feeding.

Messed around on computer till 1:00 then smashed up Jophies meds and got them to soaking again. Now just go up top and re-read what I did starting at 1:00 a.m. then fast forward to now at nearly 4 a.m.! Holy cow! I think I musta ran one day into another!

I need to go so I can at least "try" and hit the sack by 5:00 or maybe 6:00. We shall see!

Trina

Monday, October 13, 2008

Meals 4 Wheels!

10/12/08 through 10/31/08


We are live! Yes we are!

I'm so excited to finally get this project off the ground. It's been a long time in the making.

The button in our sidebar is now clickable and will take you straight to Meals 4 Wheels. We will be taking orders through October 31st. I'll leave this post up top during that time so it can easily be found.

We've also set up a support group for all those who purchase the cookbook. Once you've purchased a book your are more than welcome to go ahead and join. You can either go to the actual sight and request membership or I can send you an invitation. The group sight can be found at http://health.groups.yahoo.com/group/Meals4Wheels/

If you have any questions please direct them to Meals4Wheels@yahoo.com and someone will get back with you shortly.

We would be ever so greatful if all our friends new and old out there would help spread the word with us. You can do so by placing our Meals 4 Wheels button on your website or blog by just copying and pasting the code into your blog or website. You can find the CODE at the bottom of the Meals 4 Wheels page.

If you need any help at all with the code just toss us an email using the email above.

I will also be adding a link shortly to a flyer that we will be handing out locally as well as putting in places of business. We would love for you to pass these out as well. Just save it to your computer and print out as many as you'd like.

Think about that for just one second.

A nationwide/Worldwide flyer distribution. Wow! I don't think I've ever heard of that being done.

We would also like to extend our gratitude to all of Jophies caregivers, local friends as well as our online friends for being so supportive of this project. Your love, caring and support for Jophie is unmeasureable. We could not have completed this without you. We love you all and are forever grateful for any part you may have had in it!

We have one more request and that is to please pray for this project to be successful. Each and every portion of this project has been a labor of love fueled only by one small boy. One small boy who is loved by so many and in great need.

All our love

Trina and Jophie

Tuesday, September 23, 2008

And yet somehow.......

We're still here......Alive and kickin' and breathing!

My papaw used to say "its always a good thing when you wake up on this side of the dirt"Wise man eh? :0)

Life has been very busy and honestly I have no clue where to begin other than where I left off.
We are still adjusting to this new "trach lifestyle" and I can honestly say it hasn't come without its basket full of troubles. Jophies anatomy and shape is very deformed due to progression of disease but mostly to severe kyphosis which I won't EVEN get into the "what mostly caused it". I will say last time his Ortho doc checked his curve was more than 90 degrees and you don't have to know anything about Kyphosis to know thats a kiss your butt curve! Because of these things finding just the "right fit" for Jophies trach has been challenging to say the least.

We've continued with followup appointments with his ENT doc switching this and changing that. I think maybe I'm getting a bit ahead of myself. Let me back up a bit. Prior to the "switch this and change that plan" Jophie was just not adjusting well with the trach. He continued to be in severe pain along with regularly coughing up blood. Bright Red blood. Lots of it which to me indicated an "active bleed" "somewhere" from "something". Yea I know thats just about as clear as mud now try being on this end and looking through all that mud trying to figure out whats wrong with your non-verbal son.

Yea right.......It has NOT been fun. Not even a little bit.

The bleeding continued as well as his pain and then he started acting "ill".......We took him to see Sherrie who also assumed the "head scratch" position that seems to be the only effective thing to do these days when dealing with Jophies little troubles. Did I say little?? Surely I did not??
Well suffice to say that little visit only managed to send us in the direction of his ENT doc again but this time we had success! Don't get too excited here. Success in my book I'm certain stands for something entirely different than what it does in your book. By success I mean the ENT was able to "pinpoint" the problem.

The verdict: Severe throat infection(I'm assuming the big bad tracheitis he warned me of prior to surgery), granulation and scar tissue that had ran amuck and grown to blob monster proportions and in turn was causing the "narrowing airway" which was also responsible for my little guys lovely sounding cough liken to that of a baby velociraptor on speed! Oh and lest we forget I have to mention the grand canyon sized ulcer that the honkin big adult trach was causing and YEP thats where the bleeding was coming from.

The Solution: And let me just say I use this word "very lightly" because what we began doing was by no means the solution but rather "the path" leading us to where we are TODAY which believe it or not I am leading up to. The plan "that day" was to put Jophie on 2 weeks of a big gun antibiotic to knock that throat infection down and hopefully at the same time keep that "EVIL" pseudomonas monster at bay along with a new drug. Ah yes how lovely. One more drug for me to keep track of. Now mind you I'm not complaining but, if you could see this childs drug regimen you would understand all the eye rolling and whining I seem to be doing lately.

The new drug needed to be an inhaled steroid and that alone about pushed me into orbit. Aside from the fact that we are STILL weaning massive amounts of oral steroids from his last PICU stay he also has a "HORRIBLE" allergy to the one the ENT doc wanted to use. I KNEW exactly which one he was going to say. Pulmicort.

No can do.

He honestly could have benefitted from this years ago but it seems there weren't many options aside from the Pulmicort but today well the playing field so to speak has grown. So, the next drug of choice was FloVent. Ah well theres a new one he's never tried which that in itself pushes me into twitching mode. The child has so many severe allergies none of which you know about till you try them and he almost dies from the reactions.

Ah yes another lovely adventure for us to face "alone" at home for the first time.

We honestly didn't have much of a choice because his airway had narrowed so much from the infection and the granulation tissue SOOO, FloVent it was and can I just say I LOVE this drug. No reactions at all AND the best part it began taking down the swelling almost immediately! I honestly think this one will be right up there with Zofran as drugs we can NOT live without.

Well we puttered on through the next couple weeks obediantly changing the inner canula nightly, cleaning the trach daily and changing the entire thing out every week. The first 2 weeks he was still in considerable pain which we would find out later had "very little" to do with the surgery pain inself.

He continued coughing up blood, crying and was in just pure misery. I just knew this could NOT be the "better quality of life" everyone had been speaking of.

Could NOT BE.....

Through all of this I kept insisting I felt like the small adult trach was just too big for Jophie and that it hurt to change the canulas and it hurt to change the trachs themselves. Now you have to remember Jophie has a VERY high tolerance to pain and has had MANY surgergies some of which were much more painful than this espeically this far out post surgery.

I continued to yammer on to no avail as we pressed forward hoping for improvements and better days.

On May 8 my plan was to attend the twins pre-k Graduation but alas my plans were foiled. Lora(one of Jophies nurses) and I were changing out the entire trach. I was a bit antsy about the whole thing knowing this was still on the tale end of that bad infection/swelling and even uttered the words.

"Gosh I hope when we pull this out the airway doesn't go closed ...... Or something"

Ah yea...Or something was about right on target......

AS SOOOON as I pulled the old trach out......OK maybe even sooner ....that darn hole started closing off. I was cleaning the area like Tammy(Jophies other nurse) had been doing every week for the last 6 weeks only this time the hole began closing right before my eyes! The darn airway looked as though it were collapsing on itself! Holy cow! OK so talk about freaked...I didn't have a smaller trach to put in which your supposed to have when you leave the hospital. Seems there was a mixup on what size the ENT doc "thought" he put in Jophie.

Anyway, I had NOTHING....Nada! NOT one thing aside from a drinking straw to hold that thing open. Can you guess what unfolded next???

Ah well if you've followed us long enough you know how crazy things can become in a matter of seconds. Can anyone say 911??? YEP! You guessed it. I had to call the squad and turns out we get this "high strung" new medic lady who was freaking out. OK when I called I said...."This is NOT a respiratory distress call" I just need him to be transported quickly and safely maintaining what airway he has left.

Well next thing I know theres a second squad in the driveway and every neighbor from here to timbucktooooooo was outside watching the show. You see I used to work for this EMS company and everyone round these parts knows that when 2 squads show up its either one of 2 things..... A code OR multiple patients from a car accident NEITHER of which was happening here. Oh boy........

On a good note they did manage to get a pediatric intubation tube into his stoma to keep that airway from collapsing completely on itself. My biggest fear was it closing completely and having to go through another surgery. OH and did I mention that in the midst of this madness I phoned Jophies other nurse AND his ENT who by the end of the conversation had me feeling like white trailer trash and very incompetent.

"Why DONT you have a smaller trach for emergencies?""Don't you have nursing??" "Maybe you should just let them put it in""I have a hard time believing that hole is closing that fast""I just don't know what to tell you about getting the "extra" trachs your insurance is not covering" "Don't you have some "social service" person you can call to help with that?""Maybe this just wasn't the answer to the prayers we thought it was""Maybe we should just let it be"
UM excuse me but I'm by no means an expert at trachs "just yet" however.....

1. I'm not stupid by any means

2. I learn very quickly

3. Up to that point we had changed the trachs out for 6 weeks with NO PROBLEMS whatsoever

4. AND, more importantly....I worked on the squad as an advanced EMT for 5 years and intubated more people than I can count so back off bub!

As for his other comments......I plead the 5th for fear of the many eyes reading this

Never fear though he's since redeemed himself "somewhat" but, I won't be forgetting it anytime soon.

Now off to the hospital we go! I sent Lora ahead in the squad with Jophie and I stayed behind to pack up really quick and answer all questions from concerned neighbors then off to the hospital I flew!

By the time I got there the ENT's associate had managed to get a pediatric trach in "BARELY" and let me just say, I can NOT tell you how happy I was to hear......

"Yes doctor C the hole "really" was closing up and I could "barely" get it in myself. "

**Insert evil grin here**

Needless to stay he had to be admitted and go into surgery the next morning where the "plan" was to replace the "small adult trach" .....WHAT?? You've got to be kidding me? Just prior to surgery I couldn't help but express my concerns and if I were being honest here I could see that BOTH mine and his concerns were legitimate however, that still didn't make me any happier.

His last words to me were....."I won't know anything till I actually get in there and look however, I will "try" and work out some kind of compromise to make us both happy.

At this point I did NOT care about "MY" happiness but rather Jophies Happiness and more importantly a "painfree" solution.

One last kiss and off I went to grab something to eat. It seems I'm forever turning my son over to the hands of surgeons these days all the while sitting in a waiting room chewing my fingers down to nubs. I honestly try to keep it together but I do much better when I'm not alone and unfortunately this particular surgery there wasn't anyone to come sit with me. I know I'm a big girl but with Jophie there is the potential for "anything" to go wrong and its just plain scary facing these things alone.

Regardless, the surgery went well and the surgeon came straight out to talk with me after. The very first words out of his mouth....."I guess everything happens for a reason"

UM yep! Especially in our world where God is in control

It seems that the "larger" trach had continued to bore into that ulcer not allowing ANY healing at all. It wasn't any better compared to his last office visit but, wasn't any worse and to boot......it had begun to bore into his windpipe. UGH...This poor baby ALL THOSE WEEKS was in horrible pain much worse than we knew but, because of his high pain tolerance we couldn't see just how much.

Because of all of this, the surgeon decided to leave the smaller trach in and and not muck with it to much. The plan was to leave the smaller trach in place longer giving the airway/stoma/ulcer some time to heal however, because it does not have an inner canula the chance of it plugging off increases the longer you leave it in place not to mention the risk of infection due to his colonization of pseudomonas. Phew! Did you catch all that?

OK if that isn't bad enough in the midst of ALLLL of this madness, My fight with Medicaid continues now into the trach supplies and determining what or how many of each item they are going to pay for. Thus far they are only covering 2 trachs per month and we need 4.

I actually had to cancel one of his appointments because we didn't have the trach to take to the office to change them out. AND, because of all his complications from the bleeding ulcer/infections ect, we've had to switch to a diff. brand which is more expensive/custom/more pliable/softer trach made of silicone. It reminds me of a silicone baby nipple so you can imagine how soft that is.

OK here is where the "switching this and changing that" comes in.......

The plan was/is to use the Bivona(Custom/pricey) trachs (The surgeon did send 2 home with us after this last surgery.) One he has already been using and the other is to be put up for an emergency as it's one size smaller and to be used only in the event we have a repeat of the airway collapse thing again.

I pray not!

Just prior to switching to the Bivona(Custom/pricey) the ER had placed a pediatric Shiley(Not as pricey). These are not as soft but they are still softer than the adult Shiley which was "Hard plastic" and much bigger......

The long term plan is to "swap" back and forth with these IF he tolerates the Shiley. So far the Bivonas are working the best for him and no bleeding. I'm leaning towards just leaving well enough alone and use those.

My next struggle will be to get medicaid to go from covering 2 shileys(Not as pricey) to 2 expensive Bivonas and IF for some reason they do then I need to also convince them we need "2 more". If they will not then I will have to come up with 2 more trachs each month along with the many other things I'm already purchasing. A donation from a dear friend has made it possible to purchase one trach and as a last resort I can donate plasma 2 times per week as long as I wait 48 hours in between. I know Tammy you are dead set against this but ya gotta do what you gotta do girlie.

For now to keep from going crazy I'm focusiong on ONE TRACH AT A TIME and going to rely on our next plan.....Yes a girls gotta have a plan lest I go crazy :0)

Now this brings me to the next Big adventure! Anyone who has followed me knows for the last year I've been doing this 'lifestyle" change ....Excercising and completely changing my eating habits/foods. Since last May myself and some close friends have faithfully followed this lifestyle change all the while creating delicious dishes along the way. Foods that anyone can make and ingredients that can be found at anyones local grocery and the best part is its GOOD! We have around 100 recipes and not just "a few" of this and that but a well rounded line of Main meals, deserts and snacks/holiday foods that everyone is sure to enjoy!

The past year we've learned so much all the while compiling recipes along the way. All of our tips/tricks and the foods that we are eating. Between us all we have lost lots! Personally, I have lost nearly 100 pounds to date not including all the inches that are gone and I'm still going strong!

Two of my friends have since met their maintenance weight and I'm happy to say they continue to maintain that! In fact my closest friend has dropped too low and we are working out ways to help her pack back on a few pounds to get her back to "maintenance". One thing we have found is that we literally "crave" these foods. I'm not sure why but we do and I can honestly say I am eating "MORE" than I have ever eaten and STILL LOSING.

In fact this is working so well that my sons pediatrician and my own physician are promoting our cookbook to their patients! Yes, you read it here first. Our very own cookbook! I'd LOVE to take all the credit but can only take credit for my portion alone :0)

I'm sure many of you out there have tried "dieting" to no avail hitting all the same roadblocks like "yo yo-ing" which I hate by the way. So, we sat down and said, "What foods can we NOT live without?" My answer was of course "ALL OF THEM"! I do love to eat :0) We also asked ourselves, "can we eat this way for the rest of our lives?" If the answer was NO then we knew we would be setting ourselves up for failure "AGAIN".

SO, we made a list of our favorite foods and started there! We tweaked and trialed and errored and taste tested using US and Tammys kids and hubby as guniea pigs......Those poor babies and her poor hubby. LOL

Anyway, as we started "figuring out" the tricks and learning what to add and take away and more importantly how to do those things "without" compromising taste and next thing you know the list of recipes begin to grow and the fat began to fall OFF. In fact it snowballed into one recipe after another all the while shedding one pound and one inch after another!

Just like that!

Granted we have had some major bad tasting flops and a few "not enough calories/not enough fat/losing to fast/losing too much issues but, you won't have to suffer through any of those like we did because we've already did the "tweaking" and paved the way! :0)

Now here is where it gets exciting! One of Jophies nurses said, "Why don't you do a cookbook and why don't we call it, "Meals 4 Wheels and Beyond" and, lets use it as a fundraiser for Jophie? Wheels being some sort of transportation for Jophie and Beyond to cover "all those other supplies/equipment".

What a great idea!

Not only will we be helping others with what I think is one of the worst problems in the U.S.(being overweight) but also it will be helping Jophie. Transporting Jophie at this point has become almost impossible and very unsafe. We aren't shooting for "brand new" in fact, I would rather go "used".

Our plan is to purchase a "wreck" and Tammys dad who rebuilds wrecks will fix it up for us OR a good used vehicle. We are stepping down to something a bit smaller than the van because of the economy and also because he can no longer sit in his chair while riding.

Once the vehicle is purchased/finished we will then have to have a lift/platform of sorts put on the back so the wheelchair can be hauled. Jophie will be lying in the back seat and his PT wants him to have a side lying seatbelt like those used to transport kids in spica casts to ensure his safetly. She is so not happy with our transportation but neither am I.

The next step after that will be to get medicaid to cover a Hoyer Advance lift that can not only be used in the house to do transfers but can also be used to transfer him into the vehicle and its portable to boot! He's nearly 100 pounds now and with all his tubes/connections/supplies/equipment its impossible to move him alone.
Phew!

It's a big plan but nothing is too big for my God and I figured we might as well shoot for what we needed and not half way do it..... :0)

On a side note Sherrie(Jophies pediatrician) is working closely with us writing letters and such trying to get as much covered as she can. This is nothing new and not something we haven't tried before. In fact we have "CONTINUED" to do this for many years in an attempt to squeeze out of medicaid what is necessary and for the record when things are limited and/or denied the reason is almost always....

"That is considered a luxery" ???????

When is breathing considered a luxery?

When is preventing bugs from crawling into your airway a luxery?(yep they won't cover an HME to cover his trach when outside)

When is speaking a luxery? (I've yet to see a speaking valve even though they are "supposedly covered")

When is suctioning a luxery? (We are limited and told to "REUSE" these!) Omgosh can you believe it? My dear friend who is a missionary cracked me up this morning with her...."might we suggest THEY use them" ROFL!

And the list goes on and on and on......

It seems that medicaid has found this evil little "loophole" of sorts. A flaming one at that! When an item is ordered by his pediatrician and say she orders 10 of an item they will then make an executive decision "over" the physicians order stating you can have only X amount. Because of this "sort of approval" you can NOT contest it and/or appeal it because on paper they did NOT deny it but rather "limited" you on your quantities leaving you to cover the rest.

These are not trivial/luxery items as they so often state. I just wanna scream it from the mountain tops that these are not bicycles, bouncy balls and swingsets were asking for here folks but rather "life saving" gonna die without items!

Ah yes pass the prozac please........Breath in and breath out

OK back to business. Meals 4 Wheels is almost set to launch. There is a blog button ready complete with html so that anyone who would like to help spread the word can place it on their blog and or websites. We would so appreciate anyone that can do this for us as advertisment is going to be the KEY here. We also have started a support group which will be exclusively for members who purchase he cookbook. Our hope is that the group will help encourage and be supportive as you travel along through your weight loss journey. We've been able to do this "together" and I can't tell you how much easier it has been with full support.

We have an email already set up at meals4wheels@yahoo.com

We also have a P.O. box set up for anyone who doesn't have paypal and would need to send a money order and/or for correspondence.
Meals 4 Wheels
P.O. box 39
Kitts Hill, OH
45645

You will also notice in our sidebar our Meals 4 Wheels Button

This will be clickable once we launch.

Fast Forward to NOW as the above portion of the blog has been written since June!......

All is well in the Jungle. Fall is here and there is so much to tell about the last few months. In fact there is so much its overwhelming soooooooo.........to follow the advice of my dear friend Tia and just so I don't wind up banging my head against the wall, I'm going to just do a big ole bullet post and then we'll all be caught up!

  • April (Jophies birthday and baloon release--Jophie slept through his big day and the release went off without a hitch)
  • Jophie continued to struggle with steroid withdrawls/trach issues/infections/Ulcers/Holes bored into his windpipe/bleeding/Crying/Whining/Nashing of teeth!
  • Surgery #2 since hospital stay in March to replace old trach with a smaller pediatric one. (Success!!)
  • Healing for Jophie was still in progress and the smaller trach was working much better.
  • 3 appointments to see Dr. Chaffin (Jophies ENT/Surgeon) as he followed the progress so much so we don't have to go back for 6 months which will be spring! Yay!
  • 2 of the trachs are still being denied.
  • Jophie is using "ONLY" Bivona trachs now due to more trauma/bleeding when we tried to "swap" it for a shiley and NOW I'm leaving well enough alone.
  • As of late he's been sitting upright for about an hour at a time! Yay Jophie!
  • We've had 2 unplanned outings with Photo shoots and he's done well.
  • Today we had another outing and he loved it!
  • Our deck/ramp is being replaced due to bad work when we orginially had it done. At this moment I have a huge trailer in my yard stacked full of lumber and other construction looking "stuff"!
  • We have another outing "sort of" planned on Thursday depending on "IF" the ramp has a floor so we can get out of the house. If so we are headed to a local Lake. Not to swim but rather to walk around and hopefully Jophie will enjoy the weather/scenery. It's beautiful there and has been fully revamped to accomodate wheelchairs even out on the lake/spillway and Dam. Who knows we may have to toss a line in from his Tigger fish pole just for good measure ;0)

OK thats it for now! I have tons and tons of really cool pictures to share but, I'm gonna save those for future posts and I must say............

It sure feels good to be blogging again!

Keep an eye out for our Meals 4 Wheels launch!

Trina



Saturday, March 29, 2008

Coming up for air............

Breathing is a good thing

So I've been told.......

Seems lately I find myself gasping for air only to realize once again I'm holding my breath. I expect or rather pray this will soon pass but for now a few good hits off Jophies oxygen should keep me going.

I hope......

I do apologize for my lack of updates but I am very serious when I say

I CAN BARELY BREATH

Jophies care is very demanding and requires constant attention 24/7 and with his newest addition.....

The Trach

Life as we know it has become even more demanding if that is even possible.....

I'm sure at this point you'll be expecting some big pink fluffy bunnies and rainbow lollipops? How bout some dancing daisies or a big ole smiling Mr. Sunshine?

On most days you typically would find those things here however.....

On this day......

At this exact moment in time....

My brain is dumping just the opposite so please bear with me as the garbage flows........

Jophies surgery could not have went any better. The odds were so stacked against him yet every single procedure went perfectly. God was definitely guiding the hands of the surgeons as well as all the doctors and nurses involved with his care.

Many have asked if I was alone the day of his surgery.

I was not.

I never doubted not even for one second that I would be. I KNEW Tammy would be there barring Jesus coming back. :0) I was equally thrilled to find that Danny and their Pastor would be coming as well. I can always count on them to be there always a constant just as the air I breath. Their presence always has and always will be a safe and firm place for me to hold on to.

Thank you Danny, Tammy and Tim for coming. It would have been very difficult facing this alone.

The days following were nearly unbearable at best ....... Aside from watching Jophie in pain from something I struggled to allow, we were also dealing with steroid issues, silent cries/screams that ARE more than I can bear as well as pain management which turned into a delicate balance resolved only by listening to Jophies little fiddle. He played and we danced. The nurses were very diligent about watching/listening to me which in turn helped Jophie. We remained in the PICU the entire 3 weeks reminding me yet again that the nurses in that unit are a completely different breed. Each hospital stay(and we've had MANY) be it on the "pediatric side" or the "PICU" side, my admiration and respect continues to grow for the nurses working with Jophie and, with this comes expectations.

Yes, my expectations are very high when it comes to doctors and nurses and what I need from them but, it's only because I've experienced some of the best. I just can NOT bring myself to settle for anything less than I'm comfortable with or what I think Jophie deserves.

Would or Could you?

I've also found that to treat the child you must also see to the parents needs and when or more importantly IF you can start to understand the parent and what they are facing then and ONLY THEN will you effectively treat the child. I find this even more so when your dealing with medically fragile/chronic kids and their families.

We're Tired......
We're Weary......

NO

We're exhausted.....
We have no privacy.....
Our homes are invaded DAILY.....
We're held prisoners in the very hospitals that we KNOW will save our child.....
We long for normal.....
We long to be the one making the decisions not the one sitting back literally "on our hands" watching helplessly as others take their place in what should be OUR drivers seat.....
We long for more time.....

We long for forever......
We long for LIFE..

Our childs life....

And more than often we've been watching our child suffer for many years all the while being forced to make life and death decisions that continue to pound us like one lightning bolt after another.

Fast, Unsuspecting and Deliberate but always concise never missing its mark.

It's like a slow agonizing death with constant ups and downs aboard that dreaded emotional Roller Coaster......

I never did like Roller Coasters!

I continue to struggle with my decision. Some days I KNOW I did the right thing and other days.... I just don't know

Most days I feel like I'm failing miserably..
Doubt creeps in often....

Days when he still can't sit up....
Days when his tears flow like rain....
Days when I watch as he struggles to utter just ONE sound.....
Days when I watch his frustration through silent screams and silent crying....
Days when it looks as though his quality has suffered instead of improved.....
Days when we watch his pain and watch him cry as we care for his "new needs".....

On most days I feel very alone in all of this...In the stillness of the night and the wee hours of the morning I'm at my worst. The moment one of his nurses or aides leave the nightmares begin. Between the deafening silence of his "absent voice" and the mind numbing noise from the air compressor and concentrator I fear I might go mad....

I'm consumed with thoughts that occupy my mind constantly. Thoughts that I don't dare utter out loud lest I tell satan my secrets. Thoughts that will remain locked deep inside where they are safe.

And, if after reading this you feel like you've been drug through dog doo across a bed of nails all the while being slapped silly with thorn bushes as bamboo shoots are slowly slid underneath each nail bed then welcome to my world. Now multiply that times about oh say 100 and then maybe you can feel just a smidge of what the last 6 weeks have been like.

Maybe.....

Will it get better?
IT MUST and on certain days IT IS

Baby steps...

Am I really alone in all this?
NOT AT ALL

Does it really feel like I'm losing my mind?
YES Every single day

Did I do the right thing? Honestly?
I DONT KNOW YET
For now I have to believe I did

Will we be all right?
YES be it good or bad we WILL be OK

With the help of my my dear friends/family and my heavenly father we will go forward. I don't think my feet have actually touched the ground these past 6 weeks. I'm certain I've been carried because there is absolutely NO WAY I'd be in this upright position otherwise.

Now for the Pink fluffy bunnies you've been waiting on!
Yes, there are some good things to say :0)

He's ALIVE

I know my days with Jophie our numbered and I will NEVER EVER take his life for granted. I'm very thankful for the time we've had together and will continue to spend each and every moment as though it were our last.

His birthday is April 9th. He will be 15 and I'm so thankful for yet another year with my sweet boy!

Jophie did in fact sit up one day for about 3 hours....It wasn't the best position but it was an upright position none the less....



He's still swollen more than normal because of the steroids but it's not as bad.
He's smiling more than he did a few weeks ago.
He's sleeping.....It's not great but better.
He's still requiring sedation and pain medications but not as much.
His first trach change at home was very traumatic but not as bad as the first one in the hospital. Last weeks was even better.
Cleaning his trach each day is becoming less traumatic for him.
He doesn't seem as frightened as he was a few weeks ago. He's still scared but not as bad.
He's tolerating his feeds well.
He's tolerating his water infusions well.
He's gotten back to "his normal" schedule somewhat.
He's only requiring 2 liters of oxygen most days.
His oxygen sat remains good except during steroid withdrawls and when he needs suctioned.
His heart rate is improving. We are seeing more of his normal 40's-60/70's heart rate as opposed to the high 100's to 200's. He is still zooming when he's having steroid withdrawls/pain/agitation but aside from that there are more normal days.
He's been able to lie on his back for the first time in years and he really enjoys it. He can't lie fully because of his shape but he makes sure he's looking right at the ceiling. This would be a positive quality of life skill he's gained.

These are some of the positives I remind myself of daily. I try to find something new every day even if it is small. I NEED these reminders.

DAILY...

I also have so many people to thank. There has been so much kindness/caring and an outpouring of love for Jophie. So much so that the words fail me. I'm going to do my best to share with you all I can remember. I'm so afraid I'm going to forget someone so please forgive me if I do. In fact toss me an email and say...HEY...I did this!

Lets start with right here at home. Tammy, Lora, Katy are Jophies nurses/aide. I don't know what we would do without them. Tammy kept me calm on the phone while I waited for the ambulance/came to see us at the hospital/made sure I had snacks and food/kept me sane/spent MANY hours on the phone with me. Lora came to work early, helped me pack and spent the whole day with me at the hospital. Katy made trips to the hospital bringing Jophie supplies and all the girls families/churches prayed constantly for him during his stay and thats just the TIP of the iceberg of what these girls do for us. ONLY THE TIP. I could NEVER name all of what they do. Thank you girls for what you do and continue to do. My thank you seems so inadequate in comparison to what you do for us. Love you guys!

My online friends....

Lisa my dear friend I met on ebay. She's always the first person to make contact. Always the first person to say ..."What do you need?" Always making sure I'm eating. Lisa understands. She's been here. She knows what its like to watch your child near the brink of death...Again and Again....Living in a hospital never leaving. She's tasted death and will do anything to make this just a litle bit easier for me and she even taught me about Western Union! :0) Thank you Lisa and yet again it seems so inadequate. Love you girlie!

Jennifer my dear friend I also met on ebay. Jennifer actually lives close and is usally the second person to make contact after Lisa lets her know whats going on. She too is ready at a moments notice to bring me anything I need and/or do anything I might need and has made sure I've eaten or gotten what I need as well. ALWAYS. She too phoned regularly to check on him and even continues when we return home. It's been so nice to actually meet her! She's such a sweetheart! Love you to girlie!

The girls from my design group ODOD. They've been so patient with me as I've not been able to participate with the group for so long. These sweet girls rallied and also made sure my tummy was full. I also got to talk to a couple of the girls on the phone. Brenda continues to check on Jophie and Robbies generally was always around for a quick chat on messenger. Thank you so much girls for all prayers, support and all you've done for us. Love you guys!

The girls on both my ebay boards. Thank you so much for all your kind words/concern and prayers. They are more appreciated than you'll ever know.

The Ronald McDonald House for letting me do my laundry.

My dear friends I've met on Ethans(Little E.) prayer chat room. Thank you for your persistance as you faithfully approach the throne in Jophies behalf. And to those who were a part of Jophies Netflix surprise. Thank you so much! What a sweet gift for the little guy and for me after we got home! Its the PERFECT compliment to his Make A Wish Movie Theatre! :0)

The Doctors, nurses, respiratory, surgeons, hospital, social services and all the medical staff involved in his care.

I've gotten so many uplifting emails. Many are on my laptop and a few on my desktop. My plan is to reply to those personally so rest assured I did receive them and am very appreciative of the time you took to write me. Please be patient with me as it will take a bit of time to reply.

All the churches who had prayer chains going .... There are so many I could never name them all and my many friends on messengers that I could summon most any hour of the night or day especially my dear friend Tia! Tia even phoned a few times to check on Jophie which may not see such a big thing but it is! Tia is from England! Thank you girlie....You know I love you! :0)

There are just so many people to thank and unfortunately I'm getting very weary and my eyes are blurring so I'm going to end the Thank you's with one big.....

Thank you to everyone!

Specific prayer requests...




  1. Jophies trach to continue to heal
  2. The trach changes and cleanings to be less traumatic on him
  3. Steroid withdrawls to not be so severe OR that we can at the very least make him comfy through them
  4. Pain management
  5. For his fear to subside(he's so scared)
  6. For the return of his voice
  7. For his sadness about his absent voice(I NEVER anticipated he would know but he does know and cries ALOT because he's unable to vocalize) This absolutely KILLS me
  8. Less tears(This is UNBEARABLE for me)
  9. Echo results will show his pulomonary hypertension to be better or at the very least the same
  10. His oxygen SAT to stay up
  11. His heart rate to stay down(high 190's and 200's scare me)
  12. His respirations to stay normal
  13. For me to continue to see "POSITIVE" things every day
  14. For me in general(I'm a mess...I have Post Traumatic Stress something awful and won't even begin to get into what that entails)
  15. Strenght so I can physically and mentally care for him
  16. Knowledge and the Skills so that I can "medically" care for him(Most days I'm feeling very inadequate)
  17. That I can financially care for him(YES the battle continues for his medical supplies!) This isn't anything new. I've always had to go to war for his needs and this trach just added "MORE" I have to buy and more to fight for) Its truly insane......
  18. For my sanity
  19. For sleep
  20. For peace with my decisions
  21. For my weary body
  22. A 3rd nurse to fill the extra shift I have(Jophie is now allowed 11 nursing hours per day)

I know its alot to pray for but theres ALOT happening here with little to no reprieve.

I thank you from the bottom of my heart for your love for Jophie and as always I stand amazed at the many lives he continues to touch and the amount of love surrounding one small boy.

All our love,

Trina and Jophie

Monday, March 10, 2008

This is the day which the Lord hath made..........

Let us rejoice and be glad in it.............

Jophies surgery is later today. At the moment is 4:00 a.m. and they just made him NPO till the surgery. Ped surgeons have 14 cases tomorrow aside from any emergencies. Jophie is last on the schedule so his will most likely be somewhere between 8-11 p.m. They really couldn't give us an exact time cause typically they are behind anyway and there are almost always unforseen problems. Regardless, it will be sometime tomorrow night.

The risks are great. Much greater than I anticipated. My choices once again are grim at best. There's bad and then there's worse. I'm backed in a corner facing 2 evils. Without this he will die. With this he may die. The percentages are far greater than a normal child because of his overall condition then factor in he's compromised at this moment and the odds become even greater.

I've struggled with this for days. Praying and crying out to God for the best answer. Any answer. All those involved in his life/care are on the same page. Friends, Family, Pediatrician, Experts, Surgeons all feel like/KNOW this has to be but knowing that doesn't make this decision any easier.

Ultimately I'm the one who has to sign the dotted line. I'm the one making the final decision. I'm the one holding his life in my hands. I'm choosing life for him which could ultimately lead to his death.

Now find a quiet place. Sit down and say that out loud to yourself then imagine its your child. I'm sure you felt the same cold chills run down your spine that continue to make their way up and down mine.

It's a hard place to be in yet I can't run from it. I'd love to mind you. Run very far away with Jophie in tow and hide but then my head clears and once I again I stand toe to toe facing these giants.

When all is said and done I know God is in control. Preparing me now unfolding the way for all my tomorrows and whatever I'm to face. I'm so glad he's already in my tomorrow walking one step ahead and regardless if its joy or its sorrow I know he'll do just what he says. He will never leave Jophie and I alone and God is still God in spite of the odds. This I have to hold tight to. Believing with every ounce of my being.

There is no room for doubt.

NONE

That being said. All I ask is that if you pray please do with all that is in you and do so believing. Believe in what your asking for. Believe it like you've never believed before.

On a good note Jophie is more stable than he has been in the last couple of weeks which can only help the odds for this surgery. He continues to require 12 liters of oxygen(50 %) during wake times. At night he continues to wear his Bipap at 55 % oxygen. Looking at the overall picture this is an improvement as he was requiring 100 % and on Bipap 24/7 for the first 4-6 days and even at that was BARELY keeping his oxygen saturation in the 80's. For comparison at home prior to this he only required 2 liters and often times only 1.

Some of the biggest concerns tomorrow.
1. Intubation is going to be difficult at best. They can not just place the trach without intubation because IF the surgeon is unable to place it then he would be left without an established airway in which case he would die. We just need them to be able to do this ONE MORE TIME. Just ONE MORE. FYI: It's been over 4 years since he was last intubated and the progression of his Kyphosis/lung deterioration is significantly greater.
2. Placement of the trach. This too is going to be VERY difficult. Because of Jophies shape his trach is not near the throat like it should be but rather at the top of his breastbone. The surgeon said this will be his hardest placement ever.
3. Post complications are quite high. Much higher than I would like to see. Because he is already colonized with Pseudomonas his chances are much greater of contracting tracheitis or some other horrible infection in the trachea. Many other complications could arise due to his shape and location of his trachea.

There are many more but those are the major hurdles.

I will have my laptop with me at all times tomorrow so there will be current updates. My MSN messenger will turned on as well as my cell phone for those of you who have access to me that way. Please do not be offended if I do not answer right away or not at all. I will however do my best to keep everyone updated as I am made aware of things.

As I sat here yesterday evening I had a very rare moment to catch my breath. Jophie was sleeping very peacefully. The rooms on this side of the unit had been emptied of all its little occupants all of whom were well enough to return to the safety of their parents arms. Parents who only weeks before were skipping merrily through life never once thinking they would be on this side making life and death decisions about their most cherished possesion all the while entertaining thoughts of life without their child. Would they have believed that just days ahead they would be in this place? Most will tell you no yet here they stand on my side facing some of the very same monsters. They will leave here forever changed because they too have tasted death. They will leave here with a greater love for their child and things that once seemed important will seem trivial. Life as they once knew it will be changed and if asked they will tell you they are better because of it. I don't think there is anything more capable of putting things into prospective than the planning of your own childs funeral. Something I wish no one had to face.

And in the stillness as darkness began to fall I was reminded once again of Gods grace and his presence that is clearly etched in every shadow and orange hue. Just out the window a masterpiece painted just for me and directly behind me lying quietly in his bed another masterpiece created with the very same hands both perfect in every way.



And a few pics from the last couple days of my scruffy steroid moon face boy :0)

http://www.practiceboard.com/?8316331

Thank you all for standing firm with us and more importantly for Loving Jophie.

All our Love,
Trina and Jophie


Wednesday, March 5, 2008

Black Plague..........

Or so it seems......

It started with me and was one nasty bug. Bronchitis, Croup, Sinus infection/ears then pneumonia! I don't get sick often but when I do look out. In fact 3 weeks later I'm still feeling the lasting effects of this..... No worries though this momma will be just fine.

Jophie on the other hand is not....

Jophie began acting ill about 5 days into my ordeal. We took him to see Sherrie his ped on Monday the 25th. She actually tried to put me in the hospital and for once Jophie seemed the healthiest one. How weird is that little twist of fate? Sherrie asked how I felt as far as admitting or going home. I truly felt he was good to come home and the girls and I could treat him there. Sherrie gave him 2 rocephin shots and sent us on our way with a script for a double round of antibiotics. Monday through Wednesday we worked round the clock treating him just as if he were in the hospital and all the while he was making progress.

Wednesday during the day he was just wonderful. Things were losening up and the temp was more under control. Late Wednesday night around 9 p.m. he had what I think was an asthma attack and from there everything went into a tailspin. My worst nightmare was unfolding before my eyes once again.

The next 9 hours continued on a downward spiral as things continued to worsen. By this time I had doubled his steroids, cranked his oxygen to 6 liters, was flipping him every hour along with breathing treatments/CPT and suction all to no avail. With each hour that passed all those supportive measures were becoming less and less effective and at 6 a.m. I knew he was in real trouble. I grabbed a very quick shower and opened the blinds to snow.

UGH....Could I not get a break?

I knew it was going to have to be cleaned regardless. I couldn't get out and an ambulance could not get in so out I went wet head and all. I was really worried I wouldn't be able to clear it all because at that point I was still fairly sick but somehow I managed to not only clear the whole driveway but the deck as well all in about 10 minutes! God musta had his hands mixed all up in that :0)

I get back in the house and he's struggling just to breath. I grab the phone and dial 911 to get the ambulance on the way then I phone Tammy(A dear friend and one of Jophies nurses). I needed her to be on the other line because I honestly feared he would die in my arms. I stood at his bedside with him in a sitting position with legs hanging off the bed and leaning into me all the while dumping albuterol unit doses in continually.

Let me just say this was only BARELY effective. I could NOT get his airway open no matter what. Tammy was my rock on the other end keeping her cool and in turn helping me to keep my focus. I know your reading this Tammy and I know I tell you this often but it never feels like its enough. Thank you so much for all you and your family do for Jophie and I. We couldn't survive otherwise. We love you!

The ambulance finally arrives which seemed like forever. In reality I know it wasn't long but it sure seemed that way. I do hate sending him alone but, there is no doubt in my mind that had we of tried to take him he prolly would have died in the van on the way.

Lora(Jophies other nurse) arrived about the same time as the ambulance. Once they were headed towards the hospital she helped me pack and load everything then followed up and spent the rest of the day with me. Thank you too Lora for everything you did that day.

Needless to say I was a mess and quite frankly still am. Tomorrow will be Thursday and I can honestly say I'm a bit antsy about it. The last 2 Thursdays have been just plain yucky. I hope tomorrow shows no signs of the same.

In case you haven't figured it out....Jophie is in fact in the PICU and has been since last Thursday. It took around 3 hours to stabilize him and I truly thought he would be on the vent when all was said and done. The PICU docs and nurses here are so amazing. They put him on Bipap in an attempt to keep him off the vent. In fact they were concerned as to whether or not they could even get him on the vent due to the progression and severity of his back/shape. This is such a scary thought for me and quite frankly I'm glad I was not aware of it till later.

For 3 days he was quite critical and so very touchy. Everything was messing up. His urine looked like black coffee or chocolate pudding. I've never seen anything like it. His potassium bottomed out and his temp soared all the while he continued to struggle to breath and the bronchospasms he was having were horrid. Each one you truly thought he would quit breathing. He continues to have these bronchospasms. The severity is not as bad but they are still just as forceful and draining of his oxygen and strength. He had one late morning that I didn't think would ever end.

Blood cultures were sent but we were unable at that time to get even a tiny bit of snot. He had absolutely no reserve so we waited. They started him on 3 antibiotics. Vancomycin, Zosyn, and Cephapime trying to cover all bases. The blood cultures came back clean so they dumped the vanc. A central line was placed so he would have good access. At the time he had only 2 teeeny ones in each wrist and both were either leaking or not working properly. While placing the line they tilted the head of his bed back and snot started rolling so they grabbed a sample. It later grew Pseudomonas. UGH! I hate that ugly beasty!

The line placement went perfect and still remains intact and working. One port got a bit sluggish but they hit it with some heparin and its working just fine now. Phew! We can't lose this line. He's still getting lots of fluids and antibiotics round the clock and a couple days ago we started his feeds at a very slow rate round the clock. We had to get some calories on that belly because he hadn't eaten for 4 days. So far he's tolerating this just fine so hopefully we can up the amount at some point.

2 days ago we attempted to take him off Bipap and put him on a venti mask which didn't go over well at all.....He bottomed out on his oxygen sat in about 20 minutes so back on the Bipap he went. Yesterday we tried again and he did much better lasting about 10 hours but he really had to work hard to keep that O2 sat up. He had a horrible night and it took him till around 8 a.m. to recover from it all and then it was time to go back on the venti mask. I was able to hold em off till bout noon which gave him a bit more time to relax. Today he did well on the venti again and slept most of the day. At the moment he's back on Bipap and having bronchospasms off and on but so far he's been able to recover from them on his own.

The PICU docs had a meeting a couple days ago about Jophie and they all feel he would benefit from a trach. Talk about being caught off guard. That was so unexpected and even still I'm trying to wrap my brain around it. The attending PICU doc came and spoke with me again to see if I have thought about it anymore. I did phone my friend Tammy and we talked a bit and then phoned Sherrie his ped. This is such a huge decision and I just don't want to make the wrong one. Today I could sense an urgency in his voice to proceed. They are in no way pushing me which I appreciate but at the same time I don't feel like I can ignore that urgency in his voice. I'd be lying if I said I wasn't scared. In fact I'm pretty much terrified and to boot its coming at the worst possible time. My biggest support system(Tammy and her family) is going to be outta town this weekend and thats exactly when they want to schedule it. Ugh on the timing.

Yep I'm pretty scared.

As of today he's still stable but I would say still in a very guarded state. He's sittin on the fence so to speak. No longer on the critical side but not yet far enough on the well side.

***Sigh***

I absolutely hate making these decisions.

Thats us in a nutshell for the last 3 weeks. Nightmarish eh?

OK gotta scoot. Please continue to pray for Jophie to overcome this bug, for me to make the best decision for him, for the doctors who are and will be involved with his care and this upcoming surgery. Gosh that makes it seem even more "REAL" typing it out.


Will update as often as I can now that I have my computer up and running! Can I just say Broadband....DUH? I had to call Gateway so they could tell me how to turn on my radio so I could receive a signal. Can I get one more DUH? :0)

P.S....I'm not even gonna check for misakes so excuse the choppy mess and pathetic grammar I KNOW Tammy is absolutely cringing over. Don't even lie and say you didn't notice! Your prolly correcting it right now....LOL

Trina

Thursday, February 7, 2008

And the Winner is.................

Wow! This was fun again!

So many wonderful stories and so many worthly little ones but alas, there can only be one winner!

And the winner is.......

Playful Professional over at
http://talenttoplay.blogspot.com/

Congratulations!

She asked that the beanie be sent to a local NICU. This will be going out Saturday.

Thank you all for playing!

Shannon http://rocksinmydryer.typepad.com/ will be hosting another "bloggy giveaway" in 3 months! I will be offering another beanie with the same guidelines during that time so come back and play or better still do both! Play to win and Play by offering!


Trina

Thursday, January 31, 2008

I want this!

OK who couldn't use one of these?

Enter to win at MyWoodenSpoonDOTcom

A Cowboy's Wife is having a contest on her food blog! You can win a Hamilton Beach® Stand Mixer and she'll ship anywhere so everyone is eligible!

I personally LOVE to cook and have always wanted a "nice" mixer. I was so excited to stumble onto this giveaway! YAY!

Now to just win!
Crossin everything I own...Fingers, eyes, toes you name it :0)

Trina

Tuesday, January 29, 2008

Bloggy Giveaway......

Photobucket



It's another bloggy giveaway!

The rules are quite simple.
All you have to do is post a comment. How simple is that?! :0)
Contest will be open to U.S. residents, England, Australia and Japan.(Good luck Tia and Laura my international friends! :0))
The contest will run to Sunday Feb. 3rd at which time comments will be closed. To be fair I'll be using a random number generator to choose the winner.

This gift is something really special and YOU will play a very important role in the giving of this gift.

I'm offering ONE little beanie but not just any ordinary beanie. These beanies are made for "special" little ones. Below I will include a couple sample pictures.

I make these little beanies for preemie babies in NICU's and for children who are going through cancer treatments or some other devastating illness.

I think most of us at some point have been touched by a child in one of the above situations. Personally my heart is with the wee ones at St. Jude however, this contest is in YOUR hands.

Now for the FUN part!

I will make ONE of these beanies. Please allow a couple weeks for me to make/ship the beanie. The winner of the beanie may choose to have it sent to either a child who is currently going through cancer treatment/some other devastating illness OR if you have been fortunate enough to not have been touched by childhood cancer then I will send one Preemie beanie to the NICU of your choice. Either way the beanie will be sent in YOUR honor.

There are no wrong choices here folks! :0)


Thats it!

Once a winner is chosen we can work out the details.

Details for you to consider:
Preemie or Child with cancer/other devastating illness
BOY or GIRL
Size: Preemie up to teen
Style: See Samples below for 2 ideas(I do have more options)
Color of your choice



Preemie version



Good Luck!!

Trina

Feed my Fishies