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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.
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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.
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another update for Jojo
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
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I've sat here and tried to write something several times, but I can't find any words. Still praying.
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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.
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Prayers and words that can't be found on their way.
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Will pray for child also. Nothing is harder than having sick child. God bless.
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