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

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Tuesday, August 28, 2007

They Pulled it.......

This morning we got word that 72 hours after the PICC line culture was drawn it began growing something. Unfortunately this meant the line would have to come out.

This evening the old line was pulled and they started a peripheral IV in his foot. The line itself looked horrible. I have never seen one come out looking like that. In fact I have been uneasy about that line placement from the get go. They will be culturing the tip to determine exactly which bug is growing. He will need to receive the antibiotics in this IV for 48 hours and then there will be another minor surgery to have a new PICC line placed.

I honestly thought this would be an overnight hospital stay and for the first time ever I packed "light". I came armed with only 3 days worth of clothes and other essentials. Jophie has already used up his supply of clothes. The little messy booger. LOL

At the moment the little stinker is expressing just how ticked he is at me in the form of every annoying noise he can muster up. He may not be able to talk but he sure knows how to push all my buttons. I'm holding out hope for a much calmer Jophie in the form of benedryl he was given just a bit ago. If all else fails I have his cocktail of meds at 3:00 a.m to look forward to......

Surely he'll settle and sleep by then....

For now I find myself once again in a holding pattern.

  • Waiting for the culture results
  • Waiting for him to get better
  • Waiting for him to calm down
  • Waiting for the new PICC line placement
  • Waiting to go home
  • Waiting to sleep

And so we wait.......





Sunday, August 26, 2007

The Blood Doesn't Lie........

Deep down I "just knew".

I always do and this ability can at times mean the difference in life or death for Jophie and at other times it absolutely eats away at my very being.

Ever since Jophies last dose of Amikacin on Monday "I knew"
Even the week prior "I knew"
Talking to the doctors office on Friday "I knew"
Through tears, frustration and even anger "I knew"
Driving to the doctors office just hours later "I knew"

Jophie had been gradually going down hill since Monday. I tried to ignore it. I tried to convince myself I was seeing things. I tried to reassure myself that he would bounce back. It was a nasty bug afterall so how could we expect him to be right back to himself so soon after?

BUT.......Deep down "I knew"

I really felt sorry for the doctors office Friday as they all became the target of my frustration. They were afterall the enemy right?

Wrong....

Even when she refused my request for more Amikacin.
Even when she said "He needs to be seen"
Especially when she said.......

"He might need to be admitted"

All these things I knew to be true and in Jophies best interest yet I resisted. And resist I did pulling out every stop. I tried reasoning. I tried whining(and whine I did). I tried persuasion and when that didn't work I resorted to begging. (Nope I'm not to proud)

And through this all "I knew"

I knew that he in fact was showing signs of regression rather than progression. I knew that he really did need to be seen. I also knew that all involved really did have Jophies best interest at heart.

I "know" all this. Really. I do.

We are so very fortunate to have doctors and nurses who love Jophie so much and yes they love even me at my most unloveable moments. I know I could never in this lifetime thank them enough for all they have done and continue to do for him.

Looking back I'm ashamed of the way I acted. I try so hard to react differently but years of watching your child flirt with death over and over tends to take a toll on a body. Can anyone say Post Traumatic Stress? It's definately an emotional rollercoaster I wouldn't wish anyone to ride.

And its times like these that I'm so thankful the doctors, residents, nurses, my family and my friends all have the compassion and patience to deal with me.

In case you haven't figured it out yet.....

Jophie and I are in the hospital and have been since Friday. We pretty much have kept him sedated because he was in so much pain. Today we've spaced out the pain meds to let him wake up a bit and to see how he feels. So far so good!

The trip to the hospital which for us is from Ohio to West Virginia went smoothly as did the visit at the doctors office. From there we went to the hospital and by the time we got him unloaded in the parking lot of the hospital he was a mess. The heat along with the way he felt was just more than he could stand.

Jophie is almost always a direct admit and his doctors always pave a nice smooth path as witnessed by us at admissions. It only took "maybe" 15 minutes then up to the peds floor we went.

It took several hours to get him settled down. I had to literally hold him up against me for almost 5 hours to keep him calm and let me tell you thats no easy feat with a spastic, non-ambulatory, 75 pound 14 year old baby! It was like wrestlin with a baby bear and can I just say......

HE WON! :0)

During the wee hours of the morning we were able to get the chest X-rays which were done in the room. Labs were drawn from his PICC line and from a vein for cultures along with all the other routine things they check. I hoovered out a good snot culture for them and a urine sample was collected just to make sure we didn't miss anything. Last but not least they hung Zosyn and Vancomycin to cover all the bases till we figured out what we were dealing with.

As of tonight this is what we know.....



  • His sodium was high but now its back to normal(Most likely due to dehydration)

  • His sputum grew Strep Pneumonia and Pseudomonas

  • The blood culture from his vein grew Staphylococcus epidermidis(We're hoping this is skin contaminent)

  • The blood cuture from his PICC line grew nothing

  • The urine was clean

  • The lungs looked clear but he does in fact have Strep Pneumonia(Jophies back is so bad you can't really get a good x-ray which is really why you have to pay such close attention to those subtle symptoms he gives us)

Now we are in a holding pattern of sorts. They are running a test to determine if the Staph that grew in his blood is contaminent or if he really does have a blood infection.( I pray not) They are also running sensitivities to antibiotics to make sure the ones we are using are still sensitive and effective against the Pseudomonas plus they have to check sensitivities to the Strep Pneumonia and Blood infection as well.

If the sensitivities remain the same then we are going to keep the Zosyn and most likely add the Amikacin back on board so that darn Pseudomonas is double whammied! We are also keeping the Vancomycin until we figure out whats going on with that blood infection.

This was taken Friday at some point in the wee hours of the morning. Note the very red face and his 2 new fashion accessories.



The red face is due to a reaction from the Vancomycin. He was soooo red not to mention all the kicking and screaming. The laughter is an uncontrollable out of the ordinary type of laugh that for Jophie indicates pain. Because of the brain damage wires cross and at that moment the laughter was from pain. They had to give him IV benadryl to counteract the reaction and now he has to be pre-dosed 30 minutes prior to each dose of Vancomycin.

Now the bracelets. I just have to tell you about this new fashion trend that Cabell has recently started using and quite frankly I find it hilarious! Can you see the barcode on both bands? And what do you do with a bar code?? Yep you guessed it right. You Scan it!

Jophie has been scanned so many times in the last 3 days that I seriously think I'm hearing a beep when they scan him! EVERY SINGLE person that has anything to do with him has to scan him. I think I should request the marked down price or at the very least we should get buy one day get one free. Dontcha think??

Hopefully I will know more tomorrow on the blood infection but for now I think I deserve a shower. A much needed one at that! A little shut eye would be nice too since I've slept only 2 hours in four days.

Pray I don't fall asleep in the shower and drown. :o)


Thursday, August 23, 2007

It takes a pharmacy......

Tonight the timer went off or should I say this morning? It's actually 3:31 a.m. so yea I think that constitutes morning. No matter because this reoccuring event is nothing new nor spectacular in and of itself.

Its just an egg timer afterall given to me by Katy(Another one of my dear friends who also happens to be one of Jophies aides)



It was 7 years ago that we received this little gift and would you believe the battery is still going strong? Jophie had just gotten home from a 6 month long hospital stay housing not only his two most recent resident tenants at that time(Meet Super Bugs Staph E. and Enterobactor) but, he was also sporting his newest accessory in the form of a Triple Lumen Central line. It is aftearall the latest fashion for all special little boys.

It became apparent to not only me but more importantly to the wonderful girls that help me care for Jophie that...

  • I was very tired
  • That hanging THREE different kinds of bug juice every 2 hours around the clock was not going to be an easy task by no means
  • Did I mention I was tired? Ah yes I hadn't slept more than an hour at a time for nearly 6 months......really
  • And more importantly....The bug juice was not his only medication

Thats when Katy brought me the timer.

That little timer has become vital to his survival as it faithfully heralds the need for not just the occasional Bug Juice(It is liquid gold you know?) but also for the many medications which he requires numerous doses of daily.

Just to survive

To say our little timer gets a good workout would be a vast understatement. It is rarely set for less than 20 minute intervals. Yes thats every 20 minutes just in case your having trouble wrapping your brain around that one. It's ok though because even after 14 years my brain is still trying to wrap itself around that reality.

And after staring(NO I was Fixated) for what seemed like hours at this....

I was humbled and then terrified at the same time when I realized it wasn't all there. I could not fit all of his medications in the picture.

It really does put things into perspective wouldn't you say?

So tonight as I sit here trying to write this update that little timer continues to herald the need for yet another dose of something.....

Be it medication, nourishment or even all the machines he requires for survival heralding their own set of alarms which go without mention and rightly deserve a place of recognition all their own.

Another day

It makes no matter for the need and reality still remain regardless if I can wrap my brain around it.....or not

It does take a pharmacy to keep my baby alive.........

And that to me is just plain scary


Saturday, August 18, 2007

Movin right along............

Jophie continues to show improvement on the Amikacin. He did spike a temp Friday and was a bit agitated. Today he's slept comfortably off and on but then this evening he was agitated again. He does have some really nasty looking sores/blisters on his gums most likely from the antibiotic. That could be the culprit or he may just need to go to the bathroom. For now I've started him on his Chlorhexidine Gluconate which is an oral rinse used specifically for mouth sores. He can't swishy it like your suppose to so I just brush it on with Q-tips. I'm hoping this will help some. In the mean time I'll just watch him to see if I can pin down whats causing the agitation.

His antibiotic will continue through Monday. This will be a total of 21 days on the Amikacin via his PICC line. Sherrie(His pediatrician) wants to keep the PICC line in place for about a week beyond his last dose to see how he does without any antibiotics. IF he does well and shows no signs of the pseudomonas being active then we will go have his line pulled. IF he does poorly then we'll just have to run more antibiotics. I'm praying so hard that he shows us his old normal self minus all those horrible symptoms we've been seeing for so long!

I sat down today and was thinking about how long this latest illness has lasted. I was shocked when I realized that this has been going on since LAST October. Thats 10 months! I'm so looking forward to seeing a happy/healthier Jophie as I'm CERTAIN he will be just as pleased to feel better!

Tammy(A dear family friend who happens to also be Jophies nurse) and I changed Jophies line dressing on Thursday. It's amazing how much better it looks each time we change it especially when compared to that first and even second picture. Looks great doesn't it? I'm very pleased with the way its healed.

Truth be told I'd much rather keep his line throughout the winter months. I know that sounds absolutely absurd but, he does so well with IV meds and its so convienent for blood draws not to mention how hard it is to just access him for any type of line. I do however realize the dangers of infection and fully understand that it would be best to remove the line as soon as possible especially with Jophies immune system being like it is.

But...If it were a safer option I'd still like to keep it! :0)

Specific prayer requests:

1. The Pseudomonas will be knocked down to an inactive state.
2. His PICC line will continue to be free of infection.
3. His temperature will go back to normal and stop spiking.
4. Jophie can get back or close to his old baseline.
5. That we can manage his pain and keep him happy.

Now I must go prepare Jophies tube feeding/regular meds AND also prepare his nightly dose of IV meds!

Thank you for your continued prayers. We appreciate and covet them so much!

Leaving you with this little mug!....

Fit For Life Friday........Week 8





I'm a bit late on posting but, I'm here! Bad storms went through Thursday and I had no electric till Friday.

This week has been a bit slow....Well to be more exact I've been moving mighty slooooooow. I've been a bit under the weather for a few days plus my body was screaming for a little break from swimming.

I swim for 1 1/2 to 2 hours every day and in that time I can generally finish 300 laps in the first 90 minutes then I'll cool down the last half hour. Naturally I'm tired when I finish but for the last 4-5 days I kept noticing I was more tired than normal and was really struggling to just get 100 laps.

So.....for the last 2 days I have given myself a little break to let my body recoup and rest! I honestly think my iron was low. I was absolutely freezing/tired/sleepy/fuzzy brained. I started thinking back through the last couple weeks and you know what I realized?? I hadn't eaten hardly ANY red meat. ACK! I'm a HUGE carnivore so for me this in unheard of! It seems though that the meats I was eating were so lean and very low in iron. Needless to say this chicky made herself one big HONKIN meat loaf! Modified and healthy of course! :0)

Today I'm feeling a bit better and was able to swim about 30 minutes getting in 100 laps! Yay! I am still freezing and still pooooped but I do see an improvement. I guess the moral to this story would be......

EAT MORE RED MEAT! :0)

As far as my weight I'm still hovering between that 1-2 pound mark just shy of losing 50 pounds. No worries though! I really needed to let my body rest a bit and even with losing 2 days of excercise I still maintained......Well actually I lost a few tenths but I'm just going to keep it at a loss of 48 pounds and hit my 50 pound mark hopefully next week!

My tip for this week! Well you knew I'd have one right?????

TIP: Speakin of meat:

You can pretty much have any kind of meat you would like HOWEVER......

You need to buy the leanest cuts possible and watch the fat grams. On the back of just about every food product there is a nutritional guide with all kinds of important info.......

This is from the back of my boneless/skinless chicken breast package. As you can see its only 1 gram of fat per serving.

OK thats really good but what your not told is the best TIP EVER!

Right over from the TOTAL FAT you will see a % amount. On this particular package its 2%. You need to always check that percentage. Even if the package says 90% lean you still need to check.

You are looking for 6% OR less. Thats it! You will be amazed how many meats you can have! Now I have found some packages boasting 98% lean but they will have a high % of fat. That just means the bulk of that meat has been mixed with more fatty meat than lean meat which is NOT good and quite frankly I think its a bit deceiving of them to pull that over on us.

So all you gotta remember is 6% or less and you'll be just fine!

I hope everyone has a great week!

Wednesday, August 15, 2007

POG......

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Can I just say I HEART my Point of Grace girlies?? They are my all time favorite gospel group. I own every single one of their CD's and listen to them daily! By the Pool. At the computer. In the shower. In the bed. In the van. Everywhere! I never get tired of them. Never....

Now let me just preface by saying.....

  • I am not getting any money for this
  • I am not getting any CD's for this

It's only because I HEART Point of Grace so much that I just had to share this with you!

I'm always on the lookout for anything new from POG. Don't get me wrong I LOVE everything they have put out but like any fan I long for something new.....

Sooo......

Imagine my surprise when I hear that after more than 3 years they are releasing a NEW CD!

Could this rumor possibly be true?? I rushed right over to their website to see for myself.

Squeeeeaaal!!! I could barely contain myself! It was....

TRUE!

I truly meant to post this sooner but no worries! There is still time!

The new CD How You Live IF you pre-order it is ONLY $7.99 folks! Thats not a sample CD but rather a FULL LENGTH CD!

Holy Cow!

That price not only includes the CD but you also get....

  1. A fully autographed copy
  2. Advanced listening online to the whole CD with a special code
  3. AND a chance to win a phone call from POG

Can I just Squeeeeeaaal one more time!??

I've already ordered my copy plus one as a gift for a friend and I can hardly wait! I'm on their sight constantly listening because well....

I just can't wait!

There's not much time left as this ships on 8/28 so walk on over...
No RUN before they run out of copies at this price and we all know that when it hits market the price will most likely be at least double that without all the perks!

For those of you unfamiliar with POG, you can get a little taste of the new CD by previewing "How you Live" set to a touching video and listening to the full version of "All the World".

I just know they will bless your socks off!

Sweet Nectar for the Soul I tell ya.....

SWEET NECTAR

One more thing....

Tomorrow night 8/16/2007 .....There will be an online chat LIVE With Leigh to discuss the new CD, the tour as well as answer all your questions .

Don't miss it!

I know I'll be there!

Tuesday, August 14, 2007

May Day Weight Loss Challenge---Week 14



This is getting a bit confusing as my actual weigh in day is on Fridays but, I'll do my best to keep this straight. Since my last Tuesday post I have lost 3.4 pounds. This Friday I expect that to change as this would really only put me at mid-week in my loss so to speak.

So, that gives me a total of 48.4 pounds lost leaving me only 1.6 before I reach that 50 pound mark! Of course I have many more pounds to lose but, theres just something about hitting that 50 pound mark.....Dontcha think?

For all those who have been asking what I eat.....I've taken my favorite foods/recipes and I've modified to make them healthy so, there are a ton of yummo foods that I'm eating!

I have however in the past week shared 2 of those YUMMO recipes that might interest your tummies! :0)

One here and one here

Enjoy!

Good luck this upcoming week everyone!

Friday, August 10, 2007

Grillin' and Chillin'......

Because I was Grillin'........And because you asked

This ones for you Lisa

BBQ Chicken on the Grill




Ingredients:


  1. Boneless, Skinless Chicken Breast (1 breast per person)
  2. BBQ Sauce(Use your favorite)
  3. Honey
  4. Dry Rub(ingredients below)
  5. Worchesteshire Sauce
  6. Cooking Spray(I use butter flavor)

Did I mention I heart my grill? Just thought I'd mention it. :0)

OK this is really simple! You ready?

My chicken generally comes straight from the freezer so to prepare this icy little bosom you will need to do one of two things.

Zap it in the microwave OR Boil them till done. For times sake as it was nearing dusk....I chose to zap mine! Well let me just fess up and be honest here. It's because I'm really scared of bats and when its near dusk, those buggers seem to always know the moment I step my little piggy toes out on the back deck........Pesky little critters!

~~Shiver~~

Anyway, either way is fine but I do recommend choosing one of those methods. It not only makes the meat very tender and safer but also cuts down on your cooking time at the grill plus on this particular evening it prevented an all out war between me and those pesky winged nightmares!

Said poultry bosom getting ready for a whirl in the nuclear sauna!

While your chicken is takin a spin you might want to prepare your dry rub.

The dry rub is really simple and is just a combination of your favorite spices. I'll include what I use but certainly you should use your favorite ones.

Once again I'm horrible about not measuring so just a shake of this and a shake of that is my motto! LOL

Basically you'll want to do equal parts of each spice except the splenda in which case I go half of what I use for the other spices. Just remember you will need enough dry rub to add 2 Tbs per chicken breast. One Tbs for each side. All you'll need to do is adjust based on how many you are feeding.

The following will do about 6-8 chicken breasts.

  1. Lemon Pepper(2 Tbs)
  2. Chili Powder(2 Tbs)
  3. Cajun Seasoning(2 Tbs)
  4. BBQ Seasoning(2 Tbs)
  5. Salt(2 Tbs)--I use Morton Lite Salt
  6. Pepper(2 Tbs)
  7. Garlic Powder(2 Tbs)
  8. Lemon Pepper(2 Tbs)
  9. Splenda(1 Tbs)

Once you get the dry rub finished you should go prepare your grill. I'm using a gas grill and I cover my cooking area with aluminum foil. This makes for a quick and easy clean up and no scrubbing the grill! Yay! Now spray the foil with your favorite cooking spray and light her up!

Notice I've applied the dry rub to the first side.

Sizzle Sizzle!

No peeking for about 3 minutes or so! What your looking for is some nice grill marks and remember your chicken is basically cooked so what we're going for is just enough time to get that good grill flavor.

OK flip!

Notice I haven't added the dry rub to this side yet. In fact you will just have to imagine it because I distinctively felt the flap flap of one of those pesky winged critters so no pics! eek!

Hurrying right along.

Finally!

I'm indoors with said chicken breast and even though this looks particularly yummy as is.......It's not finished just yet!

You'll want to make a nice little foil tent(to keep it warm) over your chicken while you prepare the wet rub.

Wet Rub:

  1. BBQ Sauce: 2 Tbs (Use your favorite.....I use the brown sugar flavored)
  2. Honey: 1 Tbs
  3. Worchesteshire(Just a splash)

The above wet rub is only enough for 1 chicken breast so adjust accordingly. If your serving two people then just double that recipe and keep multiplying to accomodate the guests you are serving......

Now to finish this off!

Spoon or brush both sides of the chicken breast with all that lovely ooooey gooooeyness!

See how it just glistens?? Yummo!

And just in case your wondering......

My complete meal

And no your eyes do not deceive you. That would be my most often used best china! Paper plates! LOL

Let me just also add that I used to be one of those grill chicks who could use a whole bottle of BBQ sauce each time I grilled. Yep! I surely could! No problem!

However, because of some recent health concerns I've had to carefully monitor my intake of sugar hence my use of splenda in everything I make now. Your certainly welcome to use real sugar but I promise the taste is not compromised or lacking at all in my recipe modifications not to mention how much healthier it is!

I hope you enjoy this Lisa and I'm sorry its taken so long to get a grilled recipe to you! Let me know how you all like it. :0)

Fit For Life Friday........Week 7




I"m just now jumping on board with Fit For Life but have been trudging right along since May with Tales from the Scales. Hey I figure the more people I have to be accountable to the straighter the line I'll walk! :0)

My loss for this week is 4 pounds bringing my total weight loss since May to 48 pounds! Ahhhhh! I can just smell that 50 pound mark. Maybe next week? We shall see! :0)

TIP: Portions and Serving Sizes

One thing I've struggled with was giving up the wonderful foods that I like. I always ask myself this...

"Can I eat this way for the rest of my life?"

If your answer is NO then you probably won't. This will eventually revert back to that vicious cycle of rollercoster weight gain/loss ultimately leading to a big FAT failure.

First off you MUST....Let me repeat that one more time.

You MUST control your portions.

Once you've conqured that you are well on your way to a big FAT errrrrr SKINNY success! :0)

So what I've done is take my MOST favorite foods. Gosh is that even correct English?? Oh well I'm not here for an English lesson! Anyway, make a list of your favorite foods/dishes and then MODIFY! You can still have what you want just make it healthier and I promise if you get really creative you will not suffer one bit in the taste area.

Now I'm not saying you can't have a sloppy cheeseburger or a dripping oeeey gooooey cheesy pizza. Heavens NO! I would just die if I could never pass my favorites (unmodified of course) through this pie hole of mine. hehe

What I am saying is save those items for a special treat or reward. Once you get to your goal weight you will be better able to enjoy those things in moderation but for now.......

LIMIT them and....

MODIFY!

OK so what I'm thinking is I need to give you an example of something I've modified and LOVE. I wonder....Are you in the mood for Savory or Desert? Hmmmm....

Lets start small...

Home-made Potato Salad

Ingredients:

  1. Potatos (Adjust this according to how many you are feeding....I generally use no less than 12 because I like to eat on it for days plus I like having it on hand when guests arrive for a cookout)
  2. Fat Free Miracle Whip
  3. Mustard
  4. Light or Fat Free Sour Cream
  5. Bread and Butter Pickles
  6. Pickle Juice
  7. Onion
  8. Salt
  9. Pepper
  10. Garlic Powder
  11. Splenda

Serving Size: (Remember portions here not the whole bowl! LOL

1 cup is generally just right for me.

Dice up your potatos and then boil them till they are fork tender. Drain and rinse your potatos to get rid of the starch. Salt(I use Morton Lite Salt), Pepper, Garlic Powder(I like LOTS of garlic). Onion(I LOVE onion so I dice up one big one and use the whole thing) But, you should certainly add all these to your taste.

OK I'm one of those cooks who rarely measures so this is a guestimate on amounts. Mustard(1/4 cup), Fat Free Miracle Whip(1 cup), Fat Free or Light Sour Cream(1 cup), Bread and Butter Pickles(I use only about 6 chips then dice them into very small bits so they go throughout the P. Salad) and a Splash of Pickle Juice. Stir all this together then taste. You might need to add more Mustard or Miracle Whip depending on your taste. I go for really creamy! Last, you'll want to add some splenda. (I'd say start with about 2 TBS. then taste it. I generally add about 4 TBS. BUT, its' easier to add than take away! ;0)

I use sugar alot in my cooking but because of a recent diagnosis of glucose intolerance I've had to MODIFY! Your certainly welcome to use regular sugar however, it does contain calories and kinda defeats the purpose here. Besides, the splenda is TDF!

And if you think I'd let that potato salad be all lonely ah well then you don't know me well yet! I'm a HUGE carnivore and that potato salad is generally lying alongside some oooooeyy gooooey dripping sticky ribs or BBQ chicken all on the grill......

MODIFIED and HEALTHY of course..... ;0)

Just wait till I tell you bout my home-made ice cream made with splenda! Holy Cow!

We'll save those for another day. :0)

Enjoy and Good Luck!

Tuesday, August 7, 2007

Too Pooped to Pucker..........

Yawn......
Can I just say I'm tired??
Extremely tired and I see no end until at least Saturday.

Last week one of Jophies Aides went on vacation and will be this week as well which leaves us winging it alone Tuesday and Thursday. Another one of his Aides is starting her vacation beginning Friday so we'll wing it alone that day too. Saturdays Aide should be here aside from any unforseen problems and I can't wait so I can sleep!

I honestly haven't slept much sinch he had his PICC line placement surgery. It's not that its hard maintaining his line in fact, I think its a piece of cupcake! Jophies schedule is just so demanding to begin with and when you add anything else it just becomes that much more demanding.

No worries though cause I'll Get R' done! :0)

Jophies arm remains a bit sore but nothing like those first few days. The bruising is looking better by the day.

See how much better!? You can really see the difference when you compare it to the first picture I posted the evening of his surgery.

He's also resting much more peacefully and his vitals are slowly going back to his norm.

See how peaceful?

I just LOVE cuddling up with him when he's like this. He's like a big ole Teddy Bear and just snuggles right up to me :0)



At the moment I have his last dose of "Bug Juice" for the night hung and its slowly dripping into those veins. Now kill those buggies! I've also got him hooked up to his last tube feeding and last round of meds for this 24 hour period. Now if only that timer would go off so I can finish up!

Ahhh! Ding Ding Ding! It just sounded. Woo Hooooty! That can mean only one thing.

I get to SLEEEEEP!

Now off to unhook him from all his goodies then off to slumberland I go. :0)

Thank you for your continued prayers. We appreciate them so much.

ZZZZZZZZzzzzzzzzz

Walking in his SONshine


May Day Weight Loss Challenge---Week 13




OK I've been such a slacker about posting for this challenge. No worries though. I'm still hard at it! I had a doctors appointment yesterday and the scales were once again nice to me. My loss for the last 4 weeks is 7 pounds. I'm averaging around 2 pounds per week which is exactly my plan. :0)

I began this "new lifestyle change" late April/First of May and my total loss has now reached 45. Thats nearly 50 pounds! Holy cow! I can't believe it myself.

My goals are to stay on the same path, continue creating new and yummy recipes, SWIM/SWIM/SWIM AND, reach that 50 pound mark! If things remain as is I should hit that in about a month or so. My goal weight is still way off but this is a good start. Can't wait to reach that 50 pound loss!

Good Luck everyone!

Walking in his SONshine


Wednesday, August 1, 2007

Bug Juice......


Jophie came through the procedure just fine. The actual surgery only took about 30 minutes followed by 30 minutes in recovery. They did have a hard time placing the initial IV that would deliver the sedation. He was a bit dehydrated like I expected so the veins kept blowing that is the ones you could see. I'm so thankful it only took about 18 attempts and of course Jophie is always so good and never even whimpers. It kills me to watch him suffer so but bless his heart he's just so used to all this it has become second nature to him. After recovery we went straight to the peds floor into a negative air pressure room which protects him against germs. They are so good to him! The first dose of antibiotic arrived in the room quickly and he had no adverse reactions to it! Praise God!

The nurse had the discharge papers ready in no time at all but then we did run into a little snag. Jophies Aide that was with me became deathly ill and was unable to travel home with us. We had to call her husband to come pick her up. It's about a 40 minute drive from West Virginia back into Ohio for me so needless to say it was a scary ride home. We lie him on his side on the back bench seat then use the shoulder belt around his torse/chest and use the middle belt around his hips/thighs/legs. He actually is very secure but its impossible for me to get him in or out alone. One of the nurses from the peds floor helped us down to the van and also helped me get him loaded.

As we headed home alone I became even more nervous. He still was a bit sedated and I was worried about his airway, about him getting sick and or needing suctioned, about him getting too hot and let me tell you it was hot as blazes! I do have air in the van but not dual so not much reaches him not to mention I can't see him because of the way I have to situate the wheelchair. The trip ended up being uneventful except now I had to figure out how in the world I was going to get him out of the van and into the house alone.

My cell phones battery has been on the fizzle for some time and after about 3 unsuccessful calls at the hospital the battery was showing basically dead. On the way home I kept thinking if I could just get ONE call out of it I might be able to round up someone to meet me at the house so I flipped that thing open and would you believe I had a full charge! Yep.....It's a God thing. :0) I was able to call my neighbor and also made a second call to my friend who also is Jophies nurse. They both meet me in the driveway when we got home. Between all 3 of us we were able to transfer him safely and more importantly gently as he was in considerable pain.

The first night Jophies nurse and I had a terrible time getting ahead of his pain. We just kept pushing tylenol every 4 hours trying to get him comfy. He is unable to lie on the PICC line side without severe pain and agitation which had me worried. He has had 3 previous lines placed and although they were a bit sore it has never been anything like this. Because it is in an artery they apply a 24 hour pressure dressing so by last night that needed to be removed. I was horrified to find this. No wonder the little guy couldn't lie on that side.



Sherrie(his pediatrician) had actually phoned yesterday to check on him and wanted to know what the PICC line sight looked like but, at the time I still hadn't removed it. This morning I sent an email to her with a picture attached so she could take a peek. I'm just waiting on her return call with an opinion as to whether it looks normal or not. Jophie has never bruised like that with any of his other line placements. As a matter of fact I don't recall him EVER having a bruise that bad. The only thing that concerns me would be low platelets, the hematoma and swelling near the top or possibly something I'm unaware of. So we wait and see.

The first night we were home this was about the only position he was comfy. He's happy on his left side as well but after so long even that gets sore.

One thing I find just adorable is that he and the IV pole have become best buddies! Jophie is visually impaired so he doesn't see well. The first time I pushed that thing near his bed he just started grinning and talking to it. Well not talking like you and I would but rather "Jophie talk" cooing and jabbering just like a baby would. It think we should name it and give it a hat. What do you think? LOL

3:00 a.m.

Gettin me some Bug Juice and talkin to my new buddy

FINALLY! Some relief! We finally managed to get the tylenol going round the clock and he just crashed from exhaustion.

Party Time! I think this was around 4:00 a.m.! LOL

Last night and today has been rougher on him. He's still having significant pain in that arm, some fevers and now we are beginning to see some of the side effects of this antibiotic. It always seems to get a bit worse before it gets better. No worries though! We're in it for the long haul! :0)

For now we continue to pray, enjoy his smiles and for heavens sake don't forget.

"HANG THAT BUG JUICE!" LOL

Thank you all for your continued prayers.

Walking in his SONshine


Feed my Fishies