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

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

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