{September 20th}
At Grayson's 2 day check up his biliruben was pretty high so our pediatrician had us come back in the next day to check. It was up to 21 on day 3 so she sent us over to Children's Hospital down in Parker to get under the bili-lights there.
(Apparently its pretty hard to come by the home lights around here)
We got admitted on Tuesday afternoon and honestly thought we'd be out of there in a day or two and things would be pretty uneventful.
On Wednesday, his levels still weren't coming down at all and he started to feel really warm to touch while he was under the lights. He seemed to cool down when we had him out to feed him but always still felt warmer than usual while under the lights. On Thursday morning, we started checking his temps rectally after he seemed especially warm and he was running a 100.4 temp.
Apparently that is the trigger temp to start running tests and checking for infection, especially since he was less than a week old.
They started an IV to give him fluids, antibiotics and antivirals right away. They also did a lumbar puncture to test for bacterial meningitis and thats when we started to get worried.
Everything they tested for came back negative and our doctor was really baffled at what was causing his fever.
On Friday morning, he wasn't feeding well and his nurse noticed his oxygen levels dropped crazy low while I was holding him. She came and calmly made a comment about how they just wanted to give him a little oxygen and watch closer. A few minutes later while I was holding him again, I noticed his eyes twitching to the side and his head ticking and mentioned it to the nurse.
He also stopped breathing and went limp and as I quickly handed him over, things got crazy scary really fast.
The ticking/twitching was him having a seizure and all of a sudden all of the doctors and nurses started coming in his room. They said they were gonna move him to the trauma room down the hall just in case they needed to intubate him and were just a little concerned that he had stopped breathing.
The next hour might be the worst of my life...
He was whisked to the trauma room where he continued to seize and stopped breathing several more times. They finally got him intubated about 15-20 minutes later and told us they were going to life flight him over to the NICU at the main Children's Hospital.
The Flight for Life crew showed up and got him all set up on the stretcher.
It was so sad and scary to see my new little baby on a machine breathing for him and all hooked up.
But every single doctor and nurse and the entire transport team was soo caring and amazing and we are SO SO SO grateful that all of this happened while we were at the hospital.
I can't imagine if we had been at home when all of this went down.
We met them up at the main Children's Hospital where he was already hooked up to everything...
he had an EEG hooked up to his head, an IV with fluids (and more antibiotics and antivirals), bili-lights, plus all the other sensors and wires (heart rate, pulse ox, etc)
He had continued to seize all the way over and when they got there so they gave him a loading dose of Phenobarbital to stop the seizures. It's a pretty hefty dose and essentially shuts down all brain activity while trying to stop the seizures.
They got the seizures to stop after 2 loading doses and then we basically had to wait until the meds wore off and he 'woke back up'... which could be a couple days.
They did an MRI on Friday night and took tons of blood to start testing for more infections or viruses and rare metabolic disorders that could have caused the seizures. They also did an ultrasound to check for bleeding in his brain.
We were initially told that we probably wouldn't hear any results from the MRI until the next morning after the neurology team and radiologist had time to review it, but about an hour after they finished the neurologist came up to talk to us.
He said that the MRI showed a very distinct pattern in his brain that he had seen one other time and had read about in one paper before. He suspected it to be parechovirus... a fairly common virus that can cause the common cold. Even though it was common, it wasn't in the panel of viruses that they test for so they ran a separate test to confirm.
It came back positive the next day. We were glad to have a firm diagnosis and know that it was a viral infection in his brain that caused him to stop breathing and have seizures... but it is still a scary diagnosis.
Although the virus usually comes on like a cold for adults or even children, it was much more severe since Grayson got it at only a few days old. They said he could have gotten from anyone or anywhere, and there was no way to predict how it happened (he probably got it from me or his brothers, who all had colds when he was born). It was just a freak thing that he got it and got it so young.
The paper he referenced only noted 10 patients... which is a TINY sample set. Five of the patients ended up being totally normal with no residual effects and the other five showed some kind of developmental delays that ranged from a stutter to severe cerebral palsy. Because it was a virus, they couldn't give him anything to treat it, they just had to wait until he fought it off and there was no way to tell what the lasting effects or permanent damage to his brain would be, if any.
Our neurologist assumes that there are probably a ton more cases of the virus, but because its so poorly documented and not routinely tested for when the seizures present, its rarely diagnosed and most of those cases never have a firm confirmation of it.
The bad news is that we have no idea how things will play out.
We just have to wait and see... probably years... if there are any lasting effects from all of this.
The good news is that we loved our neurologist and know that he was absolutely in the best place and best hands to recover from all of this. His doctors were really encouraged that he recovered from everything so fast! He started having brain activity early on as the seizure meds were wearing off. He never needed another dose of the phenobarbital and never had any more seizures or breathing issues after the initial episode.
He was off of the ventilator and breathing on his own the next day and off all meds and fluids in 2 days. They started feeding him through a feeding tube on Saturday and by Sunday he was taking a bottle. We expected to be there awhile but were able to come home by Tuesday afternoon.
{taking off his EEG}
{Nana and Mimi getting to hold/feed him}
{headed home!!}
Going home they said to just treat him like a normal baby again. Look for signs of him not breathing or seizures, and if we see them, call 911. Otherwise, go on with normal life the best we could.
We are 3 weeks out now and he seems to be doing great! He is eating great and seems to be acting like a normal newborn so far.
Because he was diagnosed with an acute brain injury, we are now in the neurology clinic at Children's.
We go in for check-ins at 1, 3, 6, 9 months and 1 year. Then every 6 months or year after that until he's at least 5 years old.
They have us set up with early intervention services so we will have OT, PT, and speech therapists come to our house on a regular basis and work with him and teach us how to work with him or what signs of delays to look for (and work around).
Having something like this happen has been such a humbling experience and it is such a reality check how much we take for granted having healthy kids.
Because it is SO SCARY when they are not.
We are sooo incredibly thankful that we happened to be at the hospital when all of this went down. We are so thankful that our neurologist happened to have seen this virus once before and read that 1 paper and knew to test for it.
And we are ultimately thankful for my parents and friends for dropping everything and taking care of the boys for the week we were at the hospital. We are thankful for all of our amazing friends and family that sent so many prayers and checked in on us and offered to help in so many ways.
We have the best support system here that has taken such good care of us!
But every single doctor and nurse and the entire transport team was soo caring and amazing and we are SO SO SO grateful that all of this happened while we were at the hospital.
I can't imagine if we had been at home when all of this went down.
We met them up at the main Children's Hospital where he was already hooked up to everything...
he had an EEG hooked up to his head, an IV with fluids (and more antibiotics and antivirals), bili-lights, plus all the other sensors and wires (heart rate, pulse ox, etc)
He had continued to seize all the way over and when they got there so they gave him a loading dose of Phenobarbital to stop the seizures. It's a pretty hefty dose and essentially shuts down all brain activity while trying to stop the seizures.
They got the seizures to stop after 2 loading doses and then we basically had to wait until the meds wore off and he 'woke back up'... which could be a couple days.
They did an MRI on Friday night and took tons of blood to start testing for more infections or viruses and rare metabolic disorders that could have caused the seizures. They also did an ultrasound to check for bleeding in his brain.
We were initially told that we probably wouldn't hear any results from the MRI until the next morning after the neurology team and radiologist had time to review it, but about an hour after they finished the neurologist came up to talk to us.
He said that the MRI showed a very distinct pattern in his brain that he had seen one other time and had read about in one paper before. He suspected it to be parechovirus... a fairly common virus that can cause the common cold. Even though it was common, it wasn't in the panel of viruses that they test for so they ran a separate test to confirm.
It came back positive the next day. We were glad to have a firm diagnosis and know that it was a viral infection in his brain that caused him to stop breathing and have seizures... but it is still a scary diagnosis.
Although the virus usually comes on like a cold for adults or even children, it was much more severe since Grayson got it at only a few days old. They said he could have gotten from anyone or anywhere, and there was no way to predict how it happened (he probably got it from me or his brothers, who all had colds when he was born). It was just a freak thing that he got it and got it so young.
The paper he referenced only noted 10 patients... which is a TINY sample set. Five of the patients ended up being totally normal with no residual effects and the other five showed some kind of developmental delays that ranged from a stutter to severe cerebral palsy. Because it was a virus, they couldn't give him anything to treat it, they just had to wait until he fought it off and there was no way to tell what the lasting effects or permanent damage to his brain would be, if any.
Our neurologist assumes that there are probably a ton more cases of the virus, but because its so poorly documented and not routinely tested for when the seizures present, its rarely diagnosed and most of those cases never have a firm confirmation of it.
The bad news is that we have no idea how things will play out.
We just have to wait and see... probably years... if there are any lasting effects from all of this.
The good news is that we loved our neurologist and know that he was absolutely in the best place and best hands to recover from all of this. His doctors were really encouraged that he recovered from everything so fast! He started having brain activity early on as the seizure meds were wearing off. He never needed another dose of the phenobarbital and never had any more seizures or breathing issues after the initial episode.
He was off of the ventilator and breathing on his own the next day and off all meds and fluids in 2 days. They started feeding him through a feeding tube on Saturday and by Sunday he was taking a bottle. We expected to be there awhile but were able to come home by Tuesday afternoon.
{getting to hold my sweet boy for the first time in the NICU!}
Going home they said to just treat him like a normal baby again. Look for signs of him not breathing or seizures, and if we see them, call 911. Otherwise, go on with normal life the best we could.
We are 3 weeks out now and he seems to be doing great! He is eating great and seems to be acting like a normal newborn so far.
Because he was diagnosed with an acute brain injury, we are now in the neurology clinic at Children's.
We go in for check-ins at 1, 3, 6, 9 months and 1 year. Then every 6 months or year after that until he's at least 5 years old.
They have us set up with early intervention services so we will have OT, PT, and speech therapists come to our house on a regular basis and work with him and teach us how to work with him or what signs of delays to look for (and work around).
Having something like this happen has been such a humbling experience and it is such a reality check how much we take for granted having healthy kids.
Because it is SO SCARY when they are not.
We are sooo incredibly thankful that we happened to be at the hospital when all of this went down. We are so thankful that our neurologist happened to have seen this virus once before and read that 1 paper and knew to test for it.
And we are ultimately thankful for my parents and friends for dropping everything and taking care of the boys for the week we were at the hospital. We are thankful for all of our amazing friends and family that sent so many prayers and checked in on us and offered to help in so many ways.
We have the best support system here that has taken such good care of us!
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