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Last night my cousin shared rough news with our family. The neurology team read early results from baby JJ’s MRI & it was not good news. The brain images point out abnormalities that would result in him being in an infant state for the duration for his life.
Todays update is a lot more positive:
So today was a lot more positive than what we dealt with yesterday. We met with our neurologist today (the neurologist yesterday the general hospital neurologist and not the neonatal neurologist that specializes with babies brains) and though the news was the same on the the extent of the brain damage. The prognosis is that it’s too early to tell the effects. The doctors keep describing that by just looking at his chart hope seems lost but when they meet JJ and see the progress that there is reason for hope and that he’s clearly fighting.
In other news JJ had an echo cardiogram of his heart and his heart is near normal of a healthy newborn baby. His lungs are also getting pretty strong as well. With all of these factors they were able to successfully wean off the blood pressure medications for his heart and the nitrous oxide for his ventilator. These are pretty good milestones for JJ as he continues to recover.
We also met with the occupational therapist and they will be starting to coming along with the physical therapist to start helping JJ develop in the areas of eating, motor movement, communication, etc.
The big things to be praying for are:
1. at this time are that his oxygen levels can stay at a consistent level of 95 or higher so that we can continue to ween off the ventilator. The doctors are hoping with weening that we can move to something less invasive such as a CPAP or cannula to help him with his breathing as he keeps gagging and getting irritated throughout the day by the tube.
2. With him coming off the blood pressure medication his urine output has decreased lower than we would like. Hoping that he can build this back up.
3. Lastly, JJ’s body has been retaining a lot of fluid due to all of the medications and IV’s he is on. Prayers that his body can flush those out of his system as he continues to recover.
We thank you all for all of your prayers. Doctors are amazed at how much he is continuing to recover as they have never seen recovery from someone with this severe of HIE injury. May we be a light during this time showing all of the hospital staff how great and powerful our God is. All this to say we still have weeks if not months of recovery for JJ. We continually and humbly ask for prayer from all of you as we continue to fight this fight that JJ is clearly fighting as well.

20.7. klo 14.07
Little man was born with no heart beat for 20 minutes and brought back.
The entire crypto community has been praying for him around the world all week.
He is making great progress daily. He has an MRI scheduled for Monday to review the extend of the brain damage he has suffered from those 20 minutes.
I truly appreciate every single one of you that has been keeping him in your hearts 💯. This means more to my family than any pump.

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