Admin
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Post by Admin on Mar 21, 2021 17:54:59 GMT -5
He is in the hospital right now as I type this. Two days ago, I noticed his morning urine was a bit darker than normal, and this morning it was the color of a dark whiskey, and he was vomiting. I took him to urgent care, and they immediately transferred him to the hospital. Ultrasound shows his kidneys to be clear, but the labs also show low red counts and elevated white counts, along with low oxygenation levels. His appendix is the current thought, but we are waiting on CT scans to tell us more and also on another panel of blood work. My wife and I can only be with him one at a time, and he is so scared and brave at the same time...
As for me, I am completely terrified and don't know what to do. All I can do is show a strong face, while inside I am begging God to let me take is pain for me instead. Please pray for him...
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vmaxer
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Post by vmaxer on Mar 21, 2021 18:03:49 GMT -5
He is in the hospital right now as I type this. Two days ago, I noticed his morning urine was a bit darker than normal, and this morning it was the color of a dark whiskey, and he was vomiting. I took him to urgent care, and they immediately transferred him to the hospital. Ultrasound shows his kidneys to be clear, but the labs also show low red counts and elevated white counts, along with low oxygenation levels. His appendix is the current thought, but we are waiting on CT scans to tell us more and also on another panel of blood work. My wife and I can only be with him one at a time, and he is so scared and brave at the same time... As for me, I am completely terrified and don't know what to do. All I can do is show a strong face, while inside I am begging God to let me take is pain for me instead. Please pray for him... Praying for him and the family.
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Post by mhardy6647 on Mar 21, 2021 19:39:14 GMT -5
Sorry to hear this. Yes, of course, we'll pray for all concerned.
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Admin
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Post by Admin on Mar 21, 2021 19:40:37 GMT -5
The CT scan shows clear, but they are trying to figure out why his body is attacking his red blood cells, as that is what is causing his urine to be discolored. Glucose-6-phosphate-dehydrogenase deficiency is what they are leaning towards now. G6PD is a genetic condition that is influenced by diet with no known cure, and no real treatment. Except to stay away from fava beans and food or medications with similar properties....
He ate huge quantities of fava beans over the last couple days, as it is a staple food used heavily for Persian New Year. They may need to keep him overnight until his body stabilizes and recovers from it, but he should be ok in a few days.
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Post by pitdogg2 on Mar 21, 2021 19:40:40 GMT -5
Dang that's RUFF! I got you covered❤️❤️
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Post by westmassguy on Mar 21, 2021 19:44:30 GMT -5
Prayers sent
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vr3
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Post by vr3 on Mar 21, 2021 19:46:04 GMT -5
Sorry to hear this, but it appears they may know the cause which is good news! Hope for a speedy recovery
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F1nut
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Post by F1nut on Mar 21, 2021 20:32:47 GMT -5
No fava beans for you!
Hope he has a speedy recovery.
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Admin
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Post by Admin on Mar 21, 2021 20:33:46 GMT -5
Turns out those beans could have killed him if I didn't get him to the hospital. He is being prepped for a blood transfusion and kept overnight. I will be staying with him this evening.
Thanks for the prayers. He is not out of this yet, but turning the corner.
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JC
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Post by JC on Mar 21, 2021 20:54:20 GMT -5
Oh man. Nothing worse than the powerlessness of our kids and their pain. So sorry brother. Prayers for Jayden.
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vmaxer
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Post by vmaxer on Mar 21, 2021 20:55:58 GMT -5
Keep us posted. Praying for him.
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tonyb
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Post by tonyb on Mar 22, 2021 8:20:25 GMT -5
Prayers sent.
Beans....can carry a multitude of chemicals, always wash them if you don't already.
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Post by polrbehr on Mar 22, 2021 10:25:47 GMT -5
Adding my prayers and good thoughts to this.
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vmaxer
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Post by vmaxer on Mar 22, 2021 12:43:35 GMT -5
Any updates John. I’m sure many are thinking and praying for him and your family.
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Post by scubalab on Mar 22, 2021 15:52:34 GMT -5
Thoughts and prayers for Jayden, you, and Nooshin. Hoping for a SPEEDY recovery!
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Admin
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Post by Admin on Mar 22, 2021 17:20:16 GMT -5
Jayden is still fighting... they will be keeping him overnight again to monitor his blood levels, which at this point tend to show that another transfusion may be needed. The damage these fucking fava beans did to his red blood cells was devastating, and it appears that his bone marrow may have been affected as well, which is why it has been so hard for his body to keep up with the lost red cells. At this time, even though he looks to have turned a corner, he is still not out of the woods. For those that don't know what he is up against, here is a link. rarediseases.info.nih.gov/diseases/6520/glucose-6-phosphate-dehydrogenase-deficiencyOn a related front, I will be pretty much going to war against his pediatrician, who at least a half a dozen times, told my wife and I that it was unnecessary to have him screened for this very type of thing, given that Jayden's cousin suffers from another hereditary food deficiency (PKU) and that there is such a high rate of this in the region from which my wife comes. Had he listened to our concerns, my son would not be fighting for his life right now. His lack of concern for the even the possibility my son may have something like this, after repeated request for the testing to occur, borders on malpractice.
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vmaxer
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Post by vmaxer on Mar 22, 2021 20:10:08 GMT -5
I’m sorry he has to go through this. It has to be hard on you and your wife. Still praying for all of you.
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tonyb
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Post by tonyb on Mar 23, 2021 9:08:52 GMT -5
I hear ya John on the Doctor thing. All doctors are not created equal for sure. Find a new one, that will listen to your concerns. I myself have had to go through a few, and still that process is never ending. Apparently they have a hard time when you tell them their role is advisory but the end decisions are yours. You are in charge of your healthcare, not them. They don't like not having that God status of do as I say and don't question anything.
To me, that's a fast track to an early death.
I hope your son is doing better and has a full recovery. He's young and strong, unlike us old coots.
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vmaxer
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Post by vmaxer on Mar 23, 2021 19:08:38 GMT -5
Hey John, I hate to bother you but wondering how Jayden is doing.
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Admin
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Post by Admin on Mar 23, 2021 19:37:04 GMT -5
Funny you should ask. His condition is stable but not yet improving. They are doing another transfusion now, and they think that will finally stop his body from attacking his red blood cells. It will be tomorrow evening before we know if this is finally coming to an end, or if they need more invasive tests, like liver/kidney biopsies of colonoscopy...
Keep the prayers coming guys as they are working. Sunday afternoon it was looking life a worse outcome than where we are now.. My eternal thanks to you all.
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Post by Tony M on Mar 23, 2021 20:28:26 GMT -5
Sending some prayers for your son's recovery.
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vmaxer
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Post by vmaxer on Mar 23, 2021 20:30:02 GMT -5
I am glad he is doing better. I know it is hard on you and your wife.
Continued prayers. He’ll be back to normal before you know it. Hang in there.
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Post by afterburnt on Mar 24, 2021 14:52:58 GMT -5
Praying for your son. I didn't see this until just now.
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Admin
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Post by Admin on Mar 24, 2021 16:04:11 GMT -5
Jayden tolerated the second transfusion well and was moved from ICU to another room within the pediatric ward, and he slept well through the night, after they stopped the IV fluids. This morning he is excited smiling and happy, making all the nurses and staff laugh. Is is up and running in the halls and looking out the windows at the construction taking place next door. I explained that they are building an all-new hospital, as the doctor treating him walked in. He tells them "my daddy says they are building a new hospital next door because this one sucks!"(I never said that btw)😆.... They are still holding him tonight, and if his blood numbers improve again, Jayden will be home this time tomorrow. it will be a couple months before he is fully recovered from this and a few more after that before we fully understand the nature and severity of his condition, but thanks be to God that my boy will still be able to live a full, happy and healthy life. Thanks to all you you for your thoughts and prayers.
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vmaxer
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Post by vmaxer on Mar 24, 2021 16:16:53 GMT -5
That’s great news John. Very happy for him and the family.
Continued prayers.
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Post by mrbiron on Mar 24, 2021 18:21:30 GMT -5
Good update noosh! I can’t pray for you, due to a religious restraining order, but I can hope for the best! 😉
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Post by westmassguy on Mar 24, 2021 18:35:01 GMT -5
Wonderful news!
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Post by pitdogg2 on Mar 24, 2021 20:35:58 GMT -5
Great news👍
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Post by oldrocker on Mar 25, 2021 5:55:12 GMT -5
VERY GOOD to hear your son is getting better.
Prayers offered to all of you.
Loved the "Daddy said" part.
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schwarcw
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Post by schwarcw on Mar 25, 2021 16:21:56 GMT -5
I am glad to hear that your son Jayden is improving. I will keep Jayden and your family in my thoughts and prayers.
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