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Friday, February 17, 2017
Sunday, September 2, 2012
Parker Mason Brown Update
Happy Labor Day Weekend! Hopefully everyone is having a safe and enjoyable weekend. This time of year is always exciting with the start of football & hunting season. Now we can add the planning and celebration of Parker's Birthday to the excitement. Leah is in party planning mode and Parker's 1st Birthday will be awesome!
This post is long overdue and I appreciate all of the encouragement to keep this updated. Parker is a trooper and he continues to amaze us with how he deals with adversity. Parker's nanny, Chessa, got married in May and Parker's doctors gave him clearance to go to daycare. The folks at The Goddard School are awesome! They love Parker to death and take great care of him. As many of you may know, with daycare comes germs. Parker went on a 4 month cycle of ear infections that became predictable......runny nose, congestion, double ear infection, antibiotics for 10 days, cleared up, runny nose within a week, congestion and the cycle starts again. He went through 4 double ear infections between April and August.
The second ear infection started on June 15th when school called notifying of a 101 fever. By the time I picked him up it spiked to 103.8. Within 30 minutes of getting home he started seizing. His seizure finally broke at St. Luke's after 2 hours and 4 different doses of emergency medications. We transported to Texas Children's via ambulance where we spent the night in the ER and finally transferred to neurosurgery around 3am the next morning.
The good news was Parker had a febrile seizure (fever seizure) which is caused by a sharp rise in body temperature. This type of seizure can effect anyone and is most common in children between 6 months and 5 years of age. Epilepsy didn't cause the seizure, but it makes him more suceptable to these types of seizures. The doctors diagnosed him with another ear infection and released us the next day.
2 ear infections later on August 15th, Parker woke up one morning with a pocket of fluid built up between his skin and his skull on the back of his head near his old shunt site. Leah and I took him the ER @ Texas Children's where they couldn't diagnose the cause of the fluid build up. They adjusted the flow on his programmable shunt to increase the fluid flow and released us from the hospital the same day. The fluid build up continued to grow and which landed Parker back in the ER on August 22nd. Again, they couldn't identify the cause. They tapped his shunt to make sure it wasn't clogged (they do this by inserting a needle in the shunt and drawing out fluid manually) and then they increased the flow on his shunt again. They released us the same day.
Neither time we were in the ER did we see Parker's neurosurgeon, so we scheduled a follow-up appointment the following Monday, August 27th. Dr. Curry had an answer in about 5 minutes. The CT Scan shows Parker still has a hole in his skull from his old shunt. The pressure caused by Parker's crying during his fits of pain from the ear infections was forcing the fluid out of the old hole instead of the catheter. This will naturally stop when the old hole heals and scars. In the mean time, we need to keep him happy and upright. Parker is extremely happy sitting in my lap trying to type on the keyboard right now and, as of this morning, the fluid is almost completely dissipated!
Parker's Pals are participating in the first annual Hydrocephalus Association Walk for Houston which is being held on September 29th. We encourage anyone that would like to join our team for the walk or a donation to check out this link for Parker's Pal
This post is long overdue and I appreciate all of the encouragement to keep this updated. Parker is a trooper and he continues to amaze us with how he deals with adversity. Parker's nanny, Chessa, got married in May and Parker's doctors gave him clearance to go to daycare. The folks at The Goddard School are awesome! They love Parker to death and take great care of him. As many of you may know, with daycare comes germs. Parker went on a 4 month cycle of ear infections that became predictable......runny nose, congestion, double ear infection, antibiotics for 10 days, cleared up, runny nose within a week, congestion and the cycle starts again. He went through 4 double ear infections between April and August.
The second ear infection started on June 15th when school called notifying of a 101 fever. By the time I picked him up it spiked to 103.8. Within 30 minutes of getting home he started seizing. His seizure finally broke at St. Luke's after 2 hours and 4 different doses of emergency medications. We transported to Texas Children's via ambulance where we spent the night in the ER and finally transferred to neurosurgery around 3am the next morning.
The good news was Parker had a febrile seizure (fever seizure) which is caused by a sharp rise in body temperature. This type of seizure can effect anyone and is most common in children between 6 months and 5 years of age. Epilepsy didn't cause the seizure, but it makes him more suceptable to these types of seizures. The doctors diagnosed him with another ear infection and released us the next day.
2 ear infections later on August 15th, Parker woke up one morning with a pocket of fluid built up between his skin and his skull on the back of his head near his old shunt site. Leah and I took him the ER @ Texas Children's where they couldn't diagnose the cause of the fluid build up. They adjusted the flow on his programmable shunt to increase the fluid flow and released us from the hospital the same day. The fluid build up continued to grow and which landed Parker back in the ER on August 22nd. Again, they couldn't identify the cause. They tapped his shunt to make sure it wasn't clogged (they do this by inserting a needle in the shunt and drawing out fluid manually) and then they increased the flow on his shunt again. They released us the same day.
Neither time we were in the ER did we see Parker's neurosurgeon, so we scheduled a follow-up appointment the following Monday, August 27th. Dr. Curry had an answer in about 5 minutes. The CT Scan shows Parker still has a hole in his skull from his old shunt. The pressure caused by Parker's crying during his fits of pain from the ear infections was forcing the fluid out of the old hole instead of the catheter. This will naturally stop when the old hole heals and scars. In the mean time, we need to keep him happy and upright. Parker is extremely happy sitting in my lap trying to type on the keyboard right now and, as of this morning, the fluid is almost completely dissipated!
Parker's Pals are participating in the first annual Hydrocephalus Association Walk for Houston which is being held on September 29th. We encourage anyone that would like to join our team for the walk or a donation to check out this link for Parker's Pal
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| March - 6 Months |
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| April - 7 Months |
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| June - 8 Months |
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| July - 9 Months |
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| August 10 - Months |
Tuesday, March 27, 2012
Parker Mason Brown Emergency Surgery
I hope to get a more detailed blog post in this weekend, but here's a quick update. Parker went to the ER on Thursday night at 10pm, and surgery Friday at 8pm. The surgery ended at 10pm and we were admitted to the neurosurgery floor at Texas Children's at 10:30pm.
Parker was released on Saturday evening, yes he is a trooper. Needless to say, the docs were pleased with their art work and Parker's attitude enough to release him 19 hours after brain surgery.
He's had a few painful spells, but we're close getting that under control. I want to share something very encouraging. I pick up all of Parker's ct scans and x-rays at the hospital's archives and I've put together a progression of the brain development over the last 6 months.
Below you will notice a few things.
1. Parker's brain is developing
2. The new shunt is on the top of the head now
3. If you look closely, the new shunt looks different than the old one because it is a programmable shunt
Parker was released on Saturday evening, yes he is a trooper. Needless to say, the docs were pleased with their art work and Parker's attitude enough to release him 19 hours after brain surgery.
He's had a few painful spells, but we're close getting that under control. I want to share something very encouraging. I pick up all of Parker's ct scans and x-rays at the hospital's archives and I've put together a progression of the brain development over the last 6 months.
Below you will notice a few things.
1. Parker's brain is developing
2. The new shunt is on the top of the head now
3. If you look closely, the new shunt looks different than the old one because it is a programmable shunt
Thursday, February 16, 2012
Parker is 5 months!
Parker is 5 months old today and he rolled over for the first time! Now it's his favorite thing to do.
Hope everyone had a wonderful Valentine's Day! Parker, Leah and I had a nice picnic together.
That's all for now.
Cheers,
Dave
Hope everyone had a wonderful Valentine's Day! Parker, Leah and I had a nice picnic together.
That's all for now.
Cheers,
Dave
Monday, January 30, 2012
Parker Mason Brown - Living the Good Life
This title of the post is best depicted by Parker's 4 month picture that Leah and I took yesterday.
Parker is seizure free for 4 weeks as of today! He's growing at a normal pace according to our pediatrician, Dr. Parkerson, and he is the sweetest, happiest kiddo. Leah enjoys the days back at the office with her co-workers and Parker enjoys his days with Chessa, his nanny. Parker learns something new everyday, from slowly figuring out how to smile, laugh and jabber to quickly playing with his toys and figuring out that he has feet.
Leah and I went back and forth with our neurologist for a couple of weeks to get Parker medicated properly. He takes 1 medication 3 times a day which is prescribed for typical epilepsy. He takes another medication every morning, which will eventually be weened out. That prescription immediately stopped the clusters of seizures he was having. They believe that the fluid build up on the outside of the brain was causing the clusters, which the original medication wasn't intended to prevent. I'm assuming that we will get rid of the second medication after the external fluid recesses. Regardless, we are in a good spot.
We had one stint of sickness throughout the house that put Leah, Parker and myself all out of business for half of a week, but Parker was surprisingly content considering the circumstances. Luckily we only took one quick trip to Dr. Parkerson to make sure everything was under control. Since then, we've had his 4 month check up where he weighed 13.8 lbs and was in the 30th percentile in most categories in respect to 1 month preemie babies. Obviously, his head is topping the regular charts, but that's too be expected.
Early Childhood Intervention, ECI, came out for an interview and will be supporting Parker with Physical Therapy at our house twice a month. According to the standardized tests, he is testing as a 3 month old in regards to his fine motor skills and a new born when it comes to gross motor skills (primarily because the size of his head is holding him back from the next steps). Parker didn't respond to them ringing a bell, which is the standardized test for cognitive ability, so he ranked as a new born there. As the therapist was holding Parker, talking back and forth with him, making him laugh, ect...she told us that the standardized test for cognitive ability couldn't take into account for his ability to interact on this level and to take the results with a grain of salt.
The next 3 months will be busy with multiple appointments now that he's getting close to his 6 month mark. We hope to have more information from the doctors about his vision, hearing, head shape, and status of the shunt.
Leah, Parker and I want to thank you all for the continued support and prayers. We can't wait for him to meet more of you in 2012!!
Cheers,
Dave
Parker is seizure free for 4 weeks as of today! He's growing at a normal pace according to our pediatrician, Dr. Parkerson, and he is the sweetest, happiest kiddo. Leah enjoys the days back at the office with her co-workers and Parker enjoys his days with Chessa, his nanny. Parker learns something new everyday, from slowly figuring out how to smile, laugh and jabber to quickly playing with his toys and figuring out that he has feet.
Leah and I went back and forth with our neurologist for a couple of weeks to get Parker medicated properly. He takes 1 medication 3 times a day which is prescribed for typical epilepsy. He takes another medication every morning, which will eventually be weened out. That prescription immediately stopped the clusters of seizures he was having. They believe that the fluid build up on the outside of the brain was causing the clusters, which the original medication wasn't intended to prevent. I'm assuming that we will get rid of the second medication after the external fluid recesses. Regardless, we are in a good spot.
We had one stint of sickness throughout the house that put Leah, Parker and myself all out of business for half of a week, but Parker was surprisingly content considering the circumstances. Luckily we only took one quick trip to Dr. Parkerson to make sure everything was under control. Since then, we've had his 4 month check up where he weighed 13.8 lbs and was in the 30th percentile in most categories in respect to 1 month preemie babies. Obviously, his head is topping the regular charts, but that's too be expected.
Early Childhood Intervention, ECI, came out for an interview and will be supporting Parker with Physical Therapy at our house twice a month. According to the standardized tests, he is testing as a 3 month old in regards to his fine motor skills and a new born when it comes to gross motor skills (primarily because the size of his head is holding him back from the next steps). Parker didn't respond to them ringing a bell, which is the standardized test for cognitive ability, so he ranked as a new born there. As the therapist was holding Parker, talking back and forth with him, making him laugh, ect...she told us that the standardized test for cognitive ability couldn't take into account for his ability to interact on this level and to take the results with a grain of salt.
The next 3 months will be busy with multiple appointments now that he's getting close to his 6 month mark. We hope to have more information from the doctors about his vision, hearing, head shape, and status of the shunt.
Leah, Parker and I want to thank you all for the continued support and prayers. We can't wait for him to meet more of you in 2012!!
Cheers,
Dave
Monday, December 12, 2011
More Seizures
Coming off the heels of 2 ER visits in the last week and a half we headed into this weekend ready for anything but the med center. Friday afternoon greeted us with a short, 30 second seizure, 2 hours later another one, an hour and a half another one, and so on. In the mean time, we went through the protocol given by the doctors. After talking to the on call neurologist and neuro surgeon, we were told to increase his dosage of Keppra, his daily med. That didn't work, so by the time he seized on Saturday morning around 7am, it lasted 3 minutes and was much less subtle than the earlier episodes. Per the doctors' instructions, we gave Parker a dose of Diastat, which is similar to the meds used when we go to the ER.
Fast forward to today and he hasn't seized since we gave him the Diastat. Leah spoke to our Neurologist today for N update and they informed us that His daily meds could take up to 2 weeks to take effect. We're glad to know that now, and glad to spend a weekend at home without meeting any new doctors (in person).
As for us, Leah has presents wrapped and under the tree and she's slowly getting ready to go back to work. I am still getting my annual hunts/ fishing trips in while pushing through the year-end madness at work. Parker is the cutest kid in the world and it's time for him to go to bed. Good night
Monday, December 5, 2011
Made it Home
Leah and I are sitting on the couch with Parker sleeping on Leah's lap. Exhausted, yes, happy to be home as a family, absolutely! Being home is one thing, but walking in to a home that looks and smells like Christmas is even more relaxing.
After dinner I'm running up to pick up the meds prescribed by our neurologist. The EEG didn't show any signs of seizures, so they prescribed Keppra, a medications typically prescribed for a broad range of seizure activity. Keppra will be a daily medication used 3 times a day and Diastat is his equivalent to an epi pen. If he has an extended seizure, we will use the rectal Diastat.
Unfortunately they weren't able to pin point the cause or location of the seizures, but the good news is they have a definitive diagnosis of seizures since the activity stopped in the ER after administering Ativant (ER's version of Diastat that is administered via IV).
Time to go change a diaper :)
More Parker Mason Brown Pictures
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| He's starting to smile! |
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| EEG Testing today - 2 1/2 months |
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| 2 month shoot |
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| 1 month shoot |
Parker Brown's 2nd EEG
Parker is undergoing an EEG right now to monitor his brain activity. Right now the docs want to determine what type of seizures he is having and where they are happening. Hopefully the meds that they gave him yesterday will wear off and they can catch one seizure while being monitored. That should give the specific information they need to answer some of the questions in order to properly medicate.
Leah and I are doing well. We are getting to know the folks around here pretty well.
Sunday, December 4, 2011
Parker Mason Brown Update
Leah, Parker and I are in the ER at Texas Children's. Unfortunately this is the second time this week for the nurses and doctors to enjoy our company.
Monday afternoon we took Parker to the St. Luke's ER in the Woodlands where they performed a ct scan, x-rays, and blood work. After reviewing the results they transferred is to Texas Children's ER. After multiple tests and a true test of patience, we were admitted to the neurosurgery floor. After spending 15 hours in ER it was wonderful to have a room with a pullout bed and our own restroom. They tested for seizure activity on Tuesday night around midnight with an EEG. After the doctors collaborated on all results, they released Parker and told us their was no certain evidence of seizure activity or shunt failure/ infection, so it could just be a stomach virus that was causing the vomiting, lack of appetite, foaming at the mouth and unresponsiveness.
Fast forward to this morning. I got a call from Leah as I was driving back from my annual hunt in El Campo, TX and she said Parker was having seizures. Leah's parents, Lisa and Danny, brought Leah and Parker to the ER where I met them. Parker was seizing every 30 minutes by the time he was admitted. The doctors immediately medicated with Ativan to stop the seizures around 2pm and he hasn't had one since. Based on the ct scan and X-rays the shunt hasn't failed, but conversely done a very good job of draining the fluid from the right ventricle. Based on the blood work, no signs of infection are apparent. Initially, the thought is Parker has formed epilepsy, which was highly anticipated by our neurologist. Once we are admitted to the neurology department, they will likely do another EEG and various other tests as well as determine what medication to administer. Hopefully we will have a positive update soon.
Saturday, October 1, 2011
One Gazillion Prayers Answered
Leah and I are sitting in the NICU and Parker just finished an entire bottle while listening to Stevie Ray Vaughn's "Texas Flood". I think Parker likes the guitar since he took the bottle down in a record time.
Tuesday the doctors said we would start talking about going home in 7 - 10 days. We ensured them that we will do everything we can to get him home as soon as possible. The Doan's, who we had never met until Tuesday, had graciously offered to let us stay in their garage apartment in West U after hearing about Parker. That allowed us to be at the hospital for his morning and night bottle feeds to install consistency into his eating regiment.
Thursday, the doctors asked us if we would learn how to feed him through the feeding tube in order to go sooner. Leah and I finished all of our classes yesterday, Leah put his feeding tube in this morning which is the last test we have to do before he is cleared.
We talked to the doctors this morning and
PARKER IS COMING HOME TOMORROW!!!!!
We will bottle feed 3 times/ day and tube feed the other 5 until we see more progress. Parker also had his follow-up hearing screening yesterday afternoon since he failed his first one pre-surgery. His right ear passed and his left ear failed, so we will bring him in for detailed diagnostics on his left ear in a couple weeks.
Leah and I are elated! Thanks to everyone for all of the thoughts, prayers, notes, gifts, ect. God is surely listening and answering. I'll try to post some more pics when I get back on my computer and I hope to keep the updates coming as we find out more from the genetic testing, pediatric visits, diagnostic hearing tests, and whatever other doctors Parker gets to meet along the way.
Tuesday the doctors said we would start talking about going home in 7 - 10 days. We ensured them that we will do everything we can to get him home as soon as possible. The Doan's, who we had never met until Tuesday, had graciously offered to let us stay in their garage apartment in West U after hearing about Parker. That allowed us to be at the hospital for his morning and night bottle feeds to install consistency into his eating regiment.
Thursday, the doctors asked us if we would learn how to feed him through the feeding tube in order to go sooner. Leah and I finished all of our classes yesterday, Leah put his feeding tube in this morning which is the last test we have to do before he is cleared.
We talked to the doctors this morning and
PARKER IS COMING HOME TOMORROW!!!!!
We will bottle feed 3 times/ day and tube feed the other 5 until we see more progress. Parker also had his follow-up hearing screening yesterday afternoon since he failed his first one pre-surgery. His right ear passed and his left ear failed, so we will bring him in for detailed diagnostics on his left ear in a couple weeks.
Leah and I are elated! Thanks to everyone for all of the thoughts, prayers, notes, gifts, ect. God is surely listening and answering. I'll try to post some more pics when I get back on my computer and I hope to keep the updates coming as we find out more from the genetic testing, pediatric visits, diagnostic hearing tests, and whatever other doctors Parker gets to meet along the way.
Friday, September 23, 2011
Eye Test
Parker passed his vision test today! His eyes developed normally and no surgery will be required. The doc said we will know more about how well he will be able to see as he gets older. The eye doctor told us not to be pessimistic.
I also received a copy of the MRI and CT scans done pre and post op. I hope to take a look at those and post some of those images to help better explain what is going on in his head right now.
I also received a copy of the MRI and CT scans done pre and post op. I hope to take a look at those and post some of those images to help better explain what is going on in his head right now.
Thursday, September 22, 2011
Moving Along
Parker is making the move from Level 3 down to the Level 2 ICU....one step closer to coming home. They want to keep him a while longer to monitor his progress and run a few more tests.
They are running genetics tests, vision tests and hearing tests. He weighs 6 pounds and 14 ounces now that the fluid has drained. He is wearing his first newborn shirt and it's huge!
He pooped on me while I was changing his diaper today, which was pretty funny. He's getting better with his bottle feeding and we hope to slowly ween him off of the feeding tube before we go home.
Leah is slowly walking more and we haven't used a wheelchair today! The hardest part is leaving the hospital without our boy. Unfortunately, he won't be able to watch the Aggies beat OSU with me at home this weekend, but I'm keeping him posted on the latest news and how the team is doing!
Thanks to all of you for the thoughts and prayers! We've come to realize that there are hundreds if not thousands of folks out there that we've never met that are supporting us! God is good.
They are running genetics tests, vision tests and hearing tests. He weighs 6 pounds and 14 ounces now that the fluid has drained. He is wearing his first newborn shirt and it's huge!
He pooped on me while I was changing his diaper today, which was pretty funny. He's getting better with his bottle feeding and we hope to slowly ween him off of the feeding tube before we go home.
Leah is slowly walking more and we haven't used a wheelchair today! The hardest part is leaving the hospital without our boy. Unfortunately, he won't be able to watch the Aggies beat OSU with me at home this weekend, but I'm keeping him posted on the latest news and how the team is doing!
Thanks to all of you for the thoughts and prayers! We've come to realize that there are hundreds if not thousands of folks out there that we've never met that are supporting us! God is good.
Tuesday, September 20, 2011
PICTURES!!
I haven't been able to post pictures from my iPhone, so here are a few pictures through the first few days!
Parker's Status
Dr. Jay performed the surgery last night and we will catch up with him today. After the surgery he gave us a debreif. Parker's head was so large that his skin is now paper thin. That could cause issues with the sutures healing properly because fluid could leak from the incision area. Other than that, everything went flawlessly.
Now we hope to get a more accurate read on the diagnosis. We will speak to the neurologist today and continue to talk to the neonatologist. At this time, the neurology team isn't too optimistic about the future brain developent, but we're happy that he is doing well, breathing on his own and not showing signs of any other issues.
He is adorable and we can't wait to take him to the house and introduce him to a new, awesome world!
Now we hope to get a more accurate read on the diagnosis. We will speak to the neurologist today and continue to talk to the neonatologist. At this time, the neurology team isn't too optimistic about the future brain developent, but we're happy that he is doing well, breathing on his own and not showing signs of any other issues.
He is adorable and we can't wait to take him to the house and introduce him to a new, awesome world!
Monday, September 19, 2011
He's doing good.
Parker is out of surgery, everything went well. He's headed back to the NICU in a few!
Sunday, September 18, 2011
Finally
Leah met Parker this morning after a good night's rest. He has met a lot of people, but. Haven't seen him that comfortable and happy yet! To this point, this is the best day of my life! Parker has surgery tomorrow afternoon at 1:30. Keep him in your prayers.
Saturday, September 17, 2011
Parker and Leah Update!
Leah went into the operating room last night around 5pm. Parker joined us at 6:18pm after couple epidural's and a tough procedure. Parker is doing great and breathing on his own. He weighs 8.7 pounds and measures in at 17 3/4 inches.
Leah is slowly recovering and Parker is getting an MRI right now. The doctors plan to perform the brain surgery on Monday. I'll keep you updated.
Leah is slowly recovering and Parker is getting an MRI right now. The doctors plan to perform the brain surgery on Monday. I'll keep you updated.
Friday, September 16, 2011
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