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