Prayers for a tough little guy

My nephew will undergo brain surgery yet again tomorrow,his third one in as many years,Josiah had major strokes before he was born,and the damage to his brain has caused him a lot of health issues,including seizures which they have tried to stop with the previous surgeries,including removing the damaged portion of his brain,and the second was to seperated the two halves of his brain to keep the seizures from spreading from one side to the other,but they only partially seperated it .


SO tomorrow,he will once again undergo surgery to finish the seperation.


Josiah (JoJo) may not live to adulthood,they do not expect him to survive until his teens,but the surgeries are being done to control the seizures,and make his life a little safer,as of course he falls and injures himself during the seizures,and wears a helmet to protect his head from further injury.

Gonna try to post his CaringBridge sight for anyone who may like to read more about him,my sister is pretty candid in her descriptions


http://www.caringbridge.org/visit/josiahkovacevic

Prayers sent, Nell.

Hang in there, JoJo.:)

It's always extra sad to see a child having to go through this.

I hope all goes well and the surgery can make his life a little better!

Prayers are on their way.

Prayers sent for Jo Jo and relatives.

Please know that he and his family are in our prayers. I take situations like this pretty hard for personal reasons. God Bless!

Prayers sent for all of you, Nell.

Thanks guys,wish I could be down there for his mom and dad,but that isn't an option for me right now.

Oh the poor wee man, of course I'll say a prayer.

The best to him and family, fingers crossed for as good an out come as possible

Prayers sent from my family to yours.

Prayers are on their way for all of you.

My heartfelt prayers

Of course my prayers are offered up for his well being! :cool2:

JoJo and family will be in my thoughts and prayers Nell. I hope the surgery goes well.

Prayers for healing and strength for JoJo and the family on their way.

THe surgeon has placed JoJo's surgery on hold,not cancelled as of yet,just on hold,the following is my sisters latest CaringBridge update for JoJo's journal..


Well, today has been a little more eventful than we had hoped. We left Lakeland at 4 am and arrived amidst morning traffic in Miami. We arrived a little after 9 am. Had his skull x-ray taken, toured the new (awesome) family center (complete with kitchen, living area, laundry, showers, library, cinema, workout room, and eventually a salon (for kids) and a massage area), hunted down a pizza place for Josiah for lunch and barely made it back for our 1 pm nuerosurgery appointment (love driving around all those circles). OH yeah we got the aparement too. We thought we would have a nice quiet evening in the apartment, but that just wasn't meant to be.

The nuerosurgeon doesn't have the notes from our last round of testing where it was put to the team who reviews all the test materials and then decides what the best course of action is. In Josiah's case, what we have been told for a year now is that completing the callosotomy (splitting the brain) is the best course. We waited a year to go forward with the surgery. In reviewing the file last week, the neurosurgeon wants to make sure that the surgery is worth the risk. Apparently in the last surgery Josiah's 2/3 callosotomy was actually a 90% callosotomy. Basically, he wants to make sure the siezures are crossing over in that area to make such a surgery worth the risks involved. We don't want to do a surgery if it isn't needed. If the siezures aren't crossing over, then we need to find out why he continues to have siezures that are causing the falling, finding out how much is siezure and how much is nuero related in another way.

Steve has the grand opportunity to hold Josiah during the placing of the electrodes and wow, can the boy fight. Steve has already helped to hold him for the x-ray and even outside the room Josiah said "cary room" or scary room. So sad. He did like seeing his x-rays later though.

We are all exhausted. I hope we can get all the information that is needed for us to make a decision to continue or not. Either way it has been an emotionally trying day. We are thankful that God has given us a doctor that just won't do something just because other doctors say. We know
God is looking out for our son. He is a champ and we are so proud of him. Josiah went through all the testing last year and was suppose to be presented the week following, so their is a possibility that our neurosurgeon wasn't at that team meeting. We have seen him a few times this year and he knew the neuro team was urging us to do the surgery. Delay is better, can't exactually change ir or put it back once it is done.

Okay, so I am babbling now. We are in room xxxxxxx
The number to the hsoptial is xxxxxxxxxxxxxxx. If he has the surgery then our room will change as he will be in ICU for the first 24-48 hours.

I got to go stare at my cute little boy to catch all them stinkin siezures.

Hugs
Jen

Still hoping the best for the little guy, he seems to be holding up well as can be expected.

Prayers sent for the little guy.....

Yea,but they had already removed him from all his meds last night in preperation for the surgery,and Jen said he was bouncing off the walls,and having seizing episodes alot,the surgery is scheduled for noon est,that is a long time for him to be without the meds and not be monitored by nyone other than Jen and Steve,but I am sure that it would be difficult to keep monitor lines hooked to him at the pace she said he was keeping last night,little guy does not remember what it was like to be "drug free" he is on meds to keep him calmer than most as he has a g-tube(feeding) as the muscles in his throat and his tongue were affected by the strokes,so chewing and swallowing is very difficult or him,and usually leds to him choking,and the tube is prone to deflating and coming out,(once came out without deflating and caused him some problems as well)

They have delayed JoJo's surgery until they do more testing,poor little guy has been through almost every test known to man I think,but they want more,and JoJo just want's to go home. "peese baa home,peese"


Jen's journal update:


Josiah has had a fun day with Bolt, Bubbles and Balls. Seriously tired of watching/hearing Bolt replay and replay. The Child Life Specialist brought him these awesome Success Balls made from parachute material and a foam rubber pellets. They don't hurt when you get hit with them. She also brought him a Bubble blowing machine to play with. Anytime he wants bubble, he presses the ball on the end and they come out. They both help keep him somewhat active while being stuck in the bed.

Nuerology did officially pull the surgery for now. They decided that they want more info, since he is such a hard to control case. He has never had siezure control once the siezures started. Their is still active siezures from the area of the frontal lobe left next to his motor area and this may be a big cause of the uncontrolled siezures. The type of siezures he mainly has does not respond well to most treatment. Vagus Nerve Stimulation was discussed, but we have been told the success rate was really poor on paitients like Jojo. I do believe that one of the reasons the surgeon put a stop to the surgery is because he knew that we really didn't want to do this again. We are tired of surgeries, siezures, medications that don't work, fighting insurance, it is just exhausting, and emotionally draining. We decided to have the surgery because he has started having once that are causing him to hurt himself - like busting his chin four times in a just a few weeks, busting his teeth out, falling into things, on things, having them while in the bathroom (he is getting heavy and harder to catch. We only want him to be safe and have some independence, as it is now, he still has to be watched constantly.

We know God is directing our path in this process. I do believe that He places people in your path to help you make wise decisions. It is often intersting to hear the different fields talk about Josiah and come from different perspectives. Many of the people that work on his case we don't even see. They consult a panel of doctors, therapist, physiologist etc. when making a decision. Also, one interesting note on our neurosurgeon, before he met Josiah for the first surgery, he had been the one to suggest a complete callosotom at the time of the first surgery. Upon meeting Josiah he felt like we should take a slower process into the surgeries which is why we are now looking at his third surgery.

So on a different note, we are in an updated handicap room (yeah you would think that all hospital rooms are handicap accessible, but that is far from the case. This room is spacious with a large bathroom with wheelchair accessable showers. So nice. Poor Steve is freezing in the Florida damp apartment. It is a decent place to stay with really nice Rooms-to-Go furniture. Yes, we are in Miami, but it is chilly here. Not cold, just enough to keep you chilled. Miami to heaters is like the north with A/C. Not everyone has them.

We are fine, bored, exhausted, less emotionally taxed, but we know that God is guiding the process.

Keep up the updates, praying for JoJo and his family for strength and healing. Praying for doctors to have the insight and wisdom in their search for solutions.

THis one breaks my heart,as you can tell that the stress is getting to Jen,and she has been a real champion through 6 years of testing,treatment,therapies,and what ifs ,please continue to pray for them. I had tears streaming when reading this.THis is the latest update from the CaringBridge journal.


Here we are once again needing your prayers.

Dr. Duchowny came by today to let us know how the telemetry(Video EEG) is going. Josiah is once again continually having active siezure activity. We don't always see the siezures until the spark sets fire so to speak. He said it was like someone who is trying to start a fire and they continually get sparks and then when we see an actual siezure then it is when the fire starts. He said the reason is the maturation of the brain that has gone on since our last two surgeries. As one ages the brain changes and matures much like any body process.

Anyway, we are scheduled for an interictal scan in am. We don't have to wait for an actual siezure for this exam (Thank God). He does need to be actively sparking. However, herein lies the problem. They cannot use his port as they will need to inject a nuclear die into his veins and his port goes directly into his heart. Sounds easy enough, but not for my sweet little Jojo. Oh no, Josiah has lousey, horrible, aweful, terrible, tiny, veins. We held him down tonight and three sticks later, we were unsuccessful. The IV nurse even used the light to help guide her, to no avail. We only saw one vein on either arm. Not only is he a hard stick, he sweats like crazy while fighting every breath which makes him hard to hold. Aunt Atlanta we may need you. We really need access not only for tomorrow,but for surgery as well. The plan now is to continue running his feed until midnight and then run pedialyte to keep his veins plumped (haha) until we get a nurse who is more familiar with kids like Jojo to come in at 5:30 to try and get a vein, and then we pray it doesn't blow.

After the intericatal exam we are scheduled for a 3D MRI. We haven't had one that puts it in 3D. That is scheduled for 11:30 am, and will only take place if anesthesia is willing to keep him under long enough to do both the interictal scan and the 3D MRI at the same time.

There is a lot of hopes and maybe's riding on this plan.

I was telling Josiah how in heaven with Jesus there won't be any needles ( I think he doubted that), but he did giggle when I said there would be no bandaids with Jesus. Bandaids bring on panic and knowing that someone is going to poke him or already has.

Tonight I'm trying to hand onto hope. Praying we gain access without a lot of sticks. Tonight I am sad. Tonight my heart breaks.

Thanks for your prayers. Please pray for our friends John and Sarah Dumas and their three boys as Molly went to be with the Lord shortly after she was born. Though they rejoice in her homecoming, they are saddened at their empty arms.

Jen

I've sat here and tried to write something several times, but I can't find any words. Still praying.

Winnie,no one has to say anything,I know how hard it is to find the words,I try several times a day to find the words to comfort my family,and it usually ends up just being the same "I am praying for all of you Lil sis,wish I could be there for you,hugs and much love to you,and may God give you the strengh to stand strong whatever may happen".



Prayers are all I can ask of anyone.

prayers and tears sent.

Prayers sent.

Prayers and words that can't be found on their way.

prayers sent

Will pray for child also. Nothing is harder than having sick child. God bless.

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