Miles Tyson: shaken baby syndrome

$24,285 of $60,000 goal

Raised by 453 people in 2 months
Created January 6, 2018
From Brienna:  On Thursday, January 4, Miles was brought by ambulance to the hospital because he went unconscious. He then tested positive for RSV and later had a seizure. He was transported to Children's hospital and got a CT which showed bleeding on both sides of the brain, and later we found out he sustained traumatic brain injury. He is in critical condition right now and on a ventilator.  We are unsure of the outcome at this point, but we do know that it was so severe that he will have major problems long term. We want to thank everyone beyond measure for the love and support we have gotten. It is truly keeping us stable as parents for our son. Nothing could have ever prepared us for what we are going through, this is a nightmare.
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WE'RE HOME! We are so thankful for this as we thought 41 days ago that he was never coming home. Now that doesn't mean Miles is better, normally children would get transferred to Gillette but with him being a baby he didn't qualify. Miles was sent home with his feeding tube intact getting continuous feeds with a 4 hour break. We are weaning his opioid and benzodiazepine from home that will take about a month and he is on 5 other medicines all given multiple times a day plus a shot that I have to give him twice a day for his blood clot. And I used to be nervous to give him Tylenol...wow. He has major sensory issues. Any new movement or touches he does not like, even changing his diaper is a struggle. Children's hospital has done an amazing job getting us prepared and organized for home. So far he has 15 follow up appointments scheduled and they will just continue because some of them need regular frequent follow ups. He will have speech and physical therapy once a week at a rehab clinic and occupational a little later on. Birth-3, a home health nurse, pain and palliative will all make regular visits at our house. We have to work extra hard with PT and speech at home now that he doesn't get it every day, and also dance parties ;) cause Miles loves music. If anyone has any suggestions of sensory games we can play with him or useful toys that would be much appreciated. As far as his vision that's a complicated one as like everything else his brain damage could've affected it and we won't know until he can really tell us or if it's obvious enough for us to tell. The strong medicines that he's on could also be clouding his vision. He is not tracking at all but he reacts to lights being turned off and on.
Thank you all again for your huge love and support, this is a long scary journey. We get a lot of questions asking us about his outcome and we won't know until he starts getting older, he wouldn't normally walk or talk now so it's hard to say if he will get there or not. If his brain had damage on just one part of his brain the doctors could probably tell us what might be affected more but his damage was absolutely everywhere. I want to warm everyone that until we get into a routine visiting, messaging and calling will be more limited. We are also moving April 1st so we have a lot on our plate.
We love you all thank you so much!!!
The Tyson's
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Miles is home. Next step on the journey . . .here we come. Lots of doctor visits and PT ahead for this little man.
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Update from Brienna:
Hi guys! So Tuesday Miles got his GJ tube placed, that's why you don't see his feeding tube coming out of his nose anymore. Having this means we are getting closer to getting out of the door
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Miles is making progress with this therapy sessions. Keep the healing prayers coming.
Miles Feb. 8
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$24,285 of $60,000 goal

Raised by 453 people in 2 months
Created January 6, 2018
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