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

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Monday, July 23, 2007

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

3 comments:

Alesha said...

Oh, Trina, I am just beginning to understand the great struggle you all have been having for such a long time now. Isaac is just beginning to need all these supplies.

It is so frustrating, I know! Sometimes I just get so tired of fighting! It seems there is always some area of conflict with our kiddos - which for the "normal" child means $$$ for a sports uniform. For our child it means living or dying! It just doesn't seem right!

I do what you're doing - keep focusing on Christ. He alone can do what the state cannot. He can work miracles and meet needs whether the government does or not. I'm glad we're not dependent on them, but on HIM!

Praying for Jophie's continued healing of this bug and that the Cipro will work.

Much love,
Alesha

melody is slurping life said...

Trina, found you when you stopped by for the HP giveaway (hope you win).

I just want to offer my prayers for Jophie and your family. I'm a mom of 4 sons, 3 adopted with special needs...but nothing to compare with Jophie's struggle.

Jophie, and all special purpose children, have my heart.

Blessings.

Michelle said...

I'm new to your blog and my heart just breaks reading all of this. I can't imagine how you hold up every day. I will be praying for you and for Jophie. I hope the State makes some beneficial changes instead of crazy one. :(

On a brighter note, you won my giveaway at my blog. You can email me from there with what you want. :)

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