5 hours......

I've just spent the last two hours getting things ready for tomorrow. Jophie has so many things that have to travel with him just for survival that even to say the preparation is a "huge ordeal" would be an understatement.

I woke up sick to my stomach this morning and stayed that way till late afternoon. I just can't shake this feeling. At the moment the sick feeling is gone but now is replaced by anxiety. I keep reminding myself that God is in complete control of this situation but even still....

I keep repeating this over and over. I know its true I just need to claim it!

Matthew 6:34
Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof.

Oh how I wish this were Monday night with all this behind us!

I'm taking my laptop and if I'm able I will update after the procedure then hopefully again once we get up on the peds floor and settled in a room.

Specific prayer requests again:
1. The radiologist will be able to place the line with no complications and very few attempts.
2. Jophie will have no breathing or airway problems during the procedure.
3. Jophie will begin breathing on his own without complications once the sedation drugs are stopped.
4. Jophie will not have any seizures during or after the procedure.
5. Jophie will not get dehydrated. (We have to hold 2 meals which is a huge deal when your only tube fed).
6. Jophie's zofran will keep him from being nauseous/gagging/wretching(He can't throw up so this is a big deal).
7. Jophie will not feel any pain during the procedure and minimal after. (There will be a couple stitches plus it is invasive).
8. Jophie will not be allergic to this antibiotic.
9. The antibiotic will knock this down to an inactive state.
10. Jophie does not contract any new infections from this procedure.
11. Safe travel there and back. This is a big deal because Jophie no longer can ride locked down in his wheelchair because it doesn't fit in the van right and no normal person can afford one of those crazy handicapped accessable vans?)It's nuts!

Ok I need to scoot and make sure I have everything packed and in order because I only have 5 more hours.

Walking in his SONshine and looking upward

We have a plan.......

I always "have a plan"

I like plans. I like schedules. In fact I NEED them. It gives me some perception of control even though I actually have very little control in this very chaotic and upredictable world of Jophie. It consumes me.....in a good way.

I love being surrounded by everything him. His smell. His smiles. His blankies. His snuggles and yes I even love his Mic-key button, nasal canula and every piece of medical anything thats attached to or poking out of him because it IS a part of him. It's what makes him "JOPHIE" and to have those things attached is to have him "here"..... Alive and well

Sherrie (Jophies pediatrician and our dear friend) called on Thursday.
The results are in. His cultures did in fact grow Pseudomonas. No secret there. Thats one of many he is colonized with however that bad boy is evil and rears its ugly head often. It was active about a year ago and sensitive to Cipro which he has been on for 30 days now. This time its resistent to the Cipro and sensitive to 4 different antibiotics. The very same antibiotics it was sensitive to three years ago which tells me two things.

One: It must be the same strain of Pseudomonas that he contracted three years ago which by the way was his FIRST ever encounter with this evil bug. It's a dangerous and very resistant "super bug" and during the few years that I worked in the medical field it was always known to us as a "death sentence"
I became deathly ill when they told me because "I knew"

Two: Since it was sensitive to Cipro a year ago but not three years ago he either is colonized with "2 diff. strains of pseudomonas" OR it has mutated and is "now" resistant to the Cipro.

And its times like these that I wish I knew less. Ah yes Ignorance is sooo bliss!

After Sherrie and I spoke for a bit discussing and comparing notes she decided that the best course of action would be to have a PICC line placed and run the antibiotic that was the most sensitive.

There are four that are testing sensitive at this time.
1. Gentamicin (He can take this one but he did have some sensitivies to it three years ago)
2. Tobramycin (He had an allergic reaction to this one three years ago)
3. Azactam (This one saved his life but at the same time almost killed him)
4. Amikacin (He has never taken this one BUT it is testing as the most sensitive)

I KNEW that three years ago we had nearly exhausted every antibiotic just trying to knock that bug down to an inactive state so imagine my fear when I hear that three of the four antibiotics were ones we had already tried AND ones he had problems with.

Right now I am more thankful than any mommy could be because of the four there is ONLY ONE on that list that we have not tried AND it is the one that is the MOST sensitive meaning it would be the best one to use.

YES.....It's a God-thing :0)

"THE PLAN" was to go up early this morning and have the PICC placed outpatient however I found a few kinks in "their plan" and you know this must be "My Plan" lest I lose my sense of control. :0)

The "New Plan" will be to arrive at the hospital very early Monday morning(7:30 a.m.) which means we have to leave no later than 6:00 a.m. which also means I will not be able to sleep because I don't finish up with his stuff till around 5:00 a.m. which is when I usually hit the sack however, I'll need to hit the shower at that time. Phew! Tired yet?? But hey.....I'm "in control" :0)

After we arrive we are to go to radiology to have the PICC put in. For the record he has ALWAYS had his PICC and Central lines placed by one of the PICU docs with sedation either on the peds floor or in the PICU. Needless to say I'm a bit anxious. Jophie is a VERY hard stick on a good day and an even harder child to thread a PICC or Central line through to the heart not to mention how dangerous it is to use sedation on him. He always does NOT breath on his own when they begin taking away the sedation meds. It's a really scary thing to watch your child not breathing. I've witnessed it more than I care to.

Next obstacle will be the antibiotic. Once the line is placed aside from any complications we are to go on up to the ped floor and they are going to admit him onto the floor so they can run the first dose to make sure he isn't allergic to it and YES, I'm scared about that for more than one obvious reason.

Once we get all this behind us we're coming home and I'll maintain and run his antibiotics from here. I've ran PICC and Central lines at home for him for up to 6 months at a time so this is the easy part. We just need to get to this point.

Specific prayer requests would be:
1. The radiologist will be able to place the line with no complications and very few attempts.
2. Jophie will have no breathing or airway problems during the procedure.
3. Jophie will begin breathing on his own without complications once the sedation drugs are stopped.
4. Jophie will not have any seizures during or after the procedure.
5. Jophie will not get dehydrated. (We have to hold 2 meals which is a huge deal when your only tube fed).
6. Jophie's zofran will keep him from being nauseous/gagging/wretching(He can't throw up so this is a big deal).
7. Jophie will not feel any pain during the procedure and minimal after. (There will be a couple stitches plus it is invasive).
8. Jophie will not be allergic to this antibiotic.
9. The antibiotic will knock this down to an inactive state.
10. Jophie does not contract any new infections from this procedure.
11. Safe travel there and back. This is a big deal because Jophie no longer can ride locked down in his wheelchair because it doesn't fit in the van right and no normal person can afford one of those crazy handicapped accessable vans?)It's nuts!

Ok off to finish up Jophies food and meds and hopefully hit the sack soon! The nurse called off sick today so we're wingin it alone! :0)

Thank you all for your kind words and your continued prayers for Jophie.
We do appreciate and covet them.

Walking in his SONshine

Holding Pattern........Crash and Burn Vent

You ever feel like your in a holding pattern?
Round and round we go waiting patiently(or not so patiently) for that green light announcing a clear path for a safe landing. I find myself constantly holding my breath in anticipation for "the crash".

I honestly don't know how to shake this feeling. That holding pattern exists all around me and in every aspect of our lives.

Jophie remains there and we wait as round and round he goes. The test results so far show clear lungs(not sure how thats possible) especially when they continue to collapse(atelectasis) in spots daily. Blood cultures as of last week were not growing anything which is wonderful but I haven't called back this week(I need to but not knowing sometimes is better).....
The sputum is another story. It began growing "something" very quickly. After about 3 days they had narrowed it down to a gram - bug. (Pseudomonas is a gram - bug and also the one we suspected to be active) Last time it became active it was sensitive to Cipro which is what he has been on for nearly a month now. He has improved on the Cipro BUT, he is not well yet. He continues to keep a low grade temp and spike to 101 about every 2nd and 3rd day. Jophies normal "well temp" runs about 96.7 to 97.5. Yes I know that is very low but thats his norm. Alot of kids with brain damage have a horrible time regulating their temps and he's no exception.

One thing I am certain of at this point is.......I KNOW without a shadow of a doubt when we stop the Cipro that nasty bug will flourish and we will be back at square one. I don't know any other way to explain it other than I "just know". With Jophies inability to speak it becomes quite a challenge to determine whats wrong. It's a daunting task at best but for the most part I'm able to distinguish between pain and joy and in most instances I can pinpoint "where" or "what" part of his body the problem is stemming from. I'm so thankful God has given me this ability to "read him" like I do.

Yesterday one of Jophies medical suppliers delivered a portion of his montly supplies. I was outside swimming and didn't realize a delivery had been made. When I came inside the nurse working informed me he had left her to deliver "the not so wonderful news" to me.......

Ah yes this always makes me nervous ....

The news did involve yet "another crash"

No worries though because when it comes to medical supplies and Jophies insurance we are always "crashing" and I think I'm actually growing quite accustomed to plummeting to the earth at record speeds! :P

Jophie is dependent on suctioning to survive. I'm not talking just oral suctioning but rather "deep suctioning" where I have to use sterile technique(Gloves, sterile equipment and sterile lubrication)......The process involves going down through his nose passing through his throat and into the top of his lungs where I hit a cough reflex enabling him to clear his airway and lungs of deadly plugs and secretions that he can NOT remove himself. Without this he WILL DIE.

OK so The NEWEST cutback.....You ready for this??
The state has now determined that Jophie no longer needs 300 suction catheters per month but rather UMmmm ready??

90

Holy Cow! Can they really be that heartless??? So that means he can only be suctioned 3 times per day based on those numbers?? Are they kidding me?? There are times(especially when he is ill) that I suction him in excess of a dozen times per day. These can NOT be reused and YES we are already sterlizing and reusing (one time only use) items that we really should not be which in turn puts him at even greater risk of MORE infections.
But, I have no other choice.

To date we have already been cut back to 3 pulse oximeter probes per month and to boot they give us ONE TIME USE ONLY paper ones that last(if your careful and lucky) about 2 to 4 weeks. These probes are attached to a pulse oximeter which monitors his oxygen saturation and heart rate. Without this he would DIE. DAILY those alarms sound alerting you of a dangerously low oxygen sat or heart rate. Imagine what would happen if he wasn't hooked up while I slept (which is very little). I would most likely find him dead from a plug he couldn't clear. So you can see how important these are not to mention how 3 would NOT even last a year.

They've also cut back on his Surgilube, Gloves, Yonkers, Nasal Canulas(for his oxygen), Feeding tube bolus sets and the list goes on and on and on not to mention the next rumor.....
Oxygen tanks, his oxygen concentrator and ALL the supplies related are no longer going to be the insurances responsibility but rather the consumer and if you can't pay they will remove it from your home.(It doesn't matter if I have a doctors script stating he will DIE without it) They are heartless and care only about the dollar rather than the child on the other end.

You know whats sad?? It's not just us. It's ALL OVER. I know sooooo many kiddos who are going without or are very limited because of the very same reasons. I do have a few things that I have "extra". I am forever trying to find other little ones who may be limited in these items so I can pass them on. Isn't it a shame we have to do this??


I do hate when I get this way. I try so hard to not get angry but it just makes me so mad that not only do they continue to deny and reduce quantities but they do this KNOWING most of the items/equipment are needed to PREVENT DEATH.
THAT is what bothers me the most. They don't care about these children who have already faced monsters beyond their imaginations and then to have to "fight" for necessary items seems so cold.

What I like to do when I get this way is to remind myself to be thankful. Thankful for everything we do have. Thankful that he does in fact get montly supplies even if they are very limited. At least we DO get some. Thankful that when the day is done I KNOW I'm not alone.

We are to give thanks in ALL things and that is what has kept my focus on God. He is the only one who will sustain us through the difficult times and we have to rely upon His Grace.

"My grace is sufficient to thee: for my strength is made perfect in weakness.
2 Corinthians 12:9"

So when I'm all bleary-eyed and I think I just can't face "one more crash" .......
I look upward and remember.....

Truly....
His Grace IS Sufficient!

Walking in his SONshine

100 days and counting...........

I'm scared. I'm teetering very close to the edge of a scary place I've been before. A "super bug battle" like none you've ever seen before. Last time it nearly won.

Only 10 more days of the latest antibiotic and still I continue to see signs of that ugly head rearing of "whatever bug is attacking" this time. I'm certain its one of his colonized ones if not more than one. They are the evil ones that have been residing in his little body for nearly 4 years now. Hidden in the shadows just waiting for his immune system to drop just a little and then they attack.

Attacking with a force and vengence sending his already compromised immune system into a deadly tailspin.

Fierce they are. All of them. One is no better than the other.

He's fighting hard. He IS a great warrior and the best part....... He has the fiercest warrior of all in his corner. Our heavenly father carried him through the last battle and I'm certain he's right here with him again.

BUT, I'm still scared......

I don't like exhausting all the "big gun" antibiotics. I like having a little "guard rail" to hug up against. Something safe to snug up against when your pushed to the edge of that "super bug cliff"

I CAN think of a few more "big gun bug killers"......I can even think of a few good combinations of "bug killers" that we haven't tried yet with those come a whole nother set of problems.

Please don't misconstrue this as giving up or being unfaithful. In fact my faith remains quite strong. I KNOW exactly who is in control but like I've said before.....

I'm scared and I'd be lying if I said otherwise.......

I have some specific prayer requests but....I think it best to toss out a bit of information to better help people understand EXACTLY whats occuring.

Jophie is colonized with 3 super bugs that we're aware of and has tested positive for 2 others on numerous occasions.
Positive Colonizations:
1. Proteus Mirabilis
2. Pseudomonas
3. Stenotrophomonis Maltophilia
Possible Colonizations:
1. Klebsiella
2. Providentia
I don't know bout you but ALL those make me "shiver"

Colonization: This means those nasty bugs have basically taken up residence in his body and are living there.

Think of it this way......

You have a good army and a bad army. Jophies good army is not as strong as it should be because of his immune system. The "Nasty Super bugs" are the bad army. Jophie is fighting with ONLY ONE good yet compromised army. The "bad guys army" is 5 fold. That would be 5 bad armys against ONE compromised good army.

What happens is this:

When Jophies immune system drops down a bit more, he is exposed to a cold or illness of any sort, he has an "off" day and doesn't get the nutrition in he needs, he doesn't get the fluids in he needs OR any number of about a bazillion other things

THEN......

The "bad armys" attack.....As Jophies "good colonies" drop in numbers the "bad armys" already large numbered colonies can take over and become "active" and often more than one of the "bad armys" is active at one time. The goal is to get Jophies army back up in numbers so as to "overpower" the "bad army" and knock their numbers back down to an inactive state.

Don't get lost here......We can NOT erradicate these bugs but rather our goal is to knock them down to an inactive state in which case that would mean his "good army" is big enough in numbers to keep those "bad ones" at bay.

Make sense??

OK so I'm asking for your help here. While I've been on bended knee storming those gates for nearly 100 days now......I think the time has come to multiply "our numbers" and all together we can Storm those gates! In numbers we are sure to succeed!

Specific prayer requests would be at this time:

1. The antibiotic that he is currently on would knock whichever bug or bugs is thriving down enough to make it inactive.

2. Jophies immune system would kick in enough to bring his numbers up to keep those bugs at bay.

3. IF this one does not work then we need to figure out which bug or bugs is active AND come up with the right drug or combination of drugs to knock them down!

4. Give his doctor the knowledge and wisdom to fight this effectively again.....

NOTE: His doctors name is Sherrie. She is a christian and leans heavily on Gods guidance not only in her private life but also in her work......

I think it helps to attach names to our prayers when we can :0)

One last thing.....

LISA http://www.thepreachers-wife.blogspot.com/ I was so blessed and honored to find you had given me the

I just wanted you to know how much I appreciated your kindness and will get to this as soon as I can. :0)

OK gotta scoot!

Jophies needs are calling!

Walking in his SONshine