Jackson Update – 12.13.11

Many of you have been asking how our youngest son Jackson has been doing.  I have tried to keep everyone in the know through twitter … but, 140 characters can only keep you so informed. So here is whats been happening over the last 4 months.

In March my family and I moved from Texas back to Missouri where I serve as the Community Pastor at First Baptist Church Harvester.  With Jackson seizures we knew we needed a good Neurologist that could take on the care that he received in Texas.  We found a great Neurologist and started to see him in June.

On August 8th, Jackson had two back-to-back seizure within an hour.  This had never happened before so he was taken to the hospital via ambulance. He was released after a couple of hours with an anti-seizure prescription and appointment with our Neurologist.

When meeting with our Neuro, He recommended putting Jackson on a new medication since his currents ones were at pretty high levels.  We began that process mid August and were seizure free till November as we made the transition from Depakote to Lamictal leaving his dose of Keppra the same.

On Monday, November 7th, Jackson had three seizures within an hour.  On his third seizure we called the ambulance as each seizure seemed to intensify.  He was given an anti-seizure medication and watched for a couple of hours.  We were released with a 3 day anti-seizure prescription (a form of Valium) and instructed to call our neurologist.

The very next day, Jackson had two seizures and a third one in the ambulance outside the house.  This was 6 seizures in a 24 hour period.  After the third seizure had stopped, the Ambulance took Jackson to Children’s STL where our Neurologist and team of Dr. could make sure nothing else was going on.  Jackson was admitted and kept on a pretty high dose of clonazepam for 24 hours and then a lower dose the next day.  We were released on that Thursday after spending 2 nights there for monitoring, with instructions to increase his new medication and a 3 day prescription of clonazepam.

I wish I could say it stopped there but, it didn’t.  Early the Friday morning after Thanksgiving, Jackson had a seizure while he was sleeping.  Thankfully it was just one seizure this time but it was a seizure none the less. Our neurologist made a final increase to his medication to get him at the level that he wanted him to be on in hopes that Jackson would have less seizures. However, that has not been our experience with this new medication yet.

In the last week, Jackson has had 7 seizures.  We believe be had one this morning while he was watching TV because of the way he is sleeping as I type this post. His Neurologist has made another adjustment and  increased his medication again.  From what we are told, it takes about 4 days for any changes in medication to take full effect.  Jackson is on a very low dose of this new medication and has room to be increased on it quiet a bit. We are prayerful that this is just a transition in medicine that will eventually, once we have the right levels and dosage, have better long-term results and allow Jackson to not have seizures.

Please continue to pray for Jackson.  We believe God has a great plan for him and us through this journey and we are trusting Him even when we have more questions right now than answers.

Jackson Update

Well the blog has been quiet for the last couple of days due to Jackson having another seizure.  This one was scary in the sense that he stopped breathing and started changing colors.  Because of this, we called 911 and the ambulance arrived 5 minutes later.  This was much different from the 20 minute wait we had the last time we called 911 in November.  They loaded Jackson up for the Hospital and after a short stay at Centennials ER, we were released with a prescription for Bronchitis and instructions to control his fever.

However, I have to say that we were really disappointed with the nurse that we had.  This was the second time we have had her and both times we feel like we get poor care.  Not that we are needy, but come on, at least a smile and show some friendliness.  This  isn’t to much to ask for is it?  Or, how about turning off our beeping monitor.  I don’t understand why they have it hooked up if when it goes off no-one even seems to check it!   I know they heard it, we were right outside the nurses station.  Anyhow, sorry for the rant, it only got worse later.

We were released at 1:00 am on Friday morning with no new answers.  I had to ask the nurse to take his temperature before we left because Stephanie and I both thought Jackson felt warm.   His temperature was normal and she said we could offset giving him Tylenol and Motrin  every 2 hours.  So we gave him a dose of Tylenol in the car on the way home.

When we got home his fever had gone back up to 101.4.  We knew we were in the danger zone but could only wait it out until we could give him a dose of Motrin at 2:45ish.  Well, we didn’t make it that far.  Jackson had another seizure exactly like the first one that evening.  This time we didn’t call 911.  We waited out the seizure and I called Centennial to tell them what had just happen.  As I was telling the lady on the phone I asked if we should come back in and she told me that she can’t make that decision for us or recommend that either. Basically she couldn’t give us any advice.   She informed me that the doctor we had seen had already gone hoe for the night, and if we chose to come back in the new doctor would have to reevaluate him.  I was shocked, mad, and disappointed that this is all the help they would offer.

So,we choose to stay home and watch Jackson like a hawk.  In a short time we got his fever under control and then tried to get as much sleep as we could.  Later Friday morning Jackson saw our Neurologist who has now given us liquid Valium to give him if he starts getting a fever.  Everything seemed to be going  good, until this morning.

As I was teaching during our MS Service, Jackson’s pager went off.  Stephanie ran from the Student Center to Son City all to find that Jackson had a little fever.  As a dad, I was stuck.  I didn’t know what was going on with Jackson, and was in the middle of the talk.  Needless to say my heart went to my stomach immediately.  We stopped what we were doing, payed for Jackson and tried to continue with the lesson.  I figured if it was serious someone would be coming soon to get me.  About 5 minutes later I got a thumbs up from one of our volunteers who had gone down to check on the situation while I was teaching.  Thankfully it was not an emergency!  But definitely a day and weekend I will never forget.

I personally want to thank all the people that have loved on us, encouraged us, and prayer for us.  We are so blessed to have each of you in our life and thank God daily for you.  Every time we look at Jackson, we see the power of prayer, and we are reminded of how much people care and are willing to invest in out little family.  So with that, I say thank you!!!!

Jackson Update #8 from Home

Jackson is doing much better.  He is still congested and coughs but is now eating and playing like normal.  Stephanie and I are still uneasy at night when it’s time for bed.  Jackson coughs more and has a hard time spitting it out or swallowing the mucus. (I know that’s gross) However, I do believe we have made the turn to recovery.

On another note, our neurologist has increased is medication.  We are in the process of switching from depakote to keppra.  Stephanie and I feel that the levels of these 2 meds were too low and that’s why he had a seizure on Saturday.  Hopefully we will get those levels balanced and not have as many seizures.  That’s the whole point of switching medication.  Please pray with us in this direction.

Thanks so much for the prayers and taking this journey with us.  I will keep you posted if things get worse!

Jackson Update #5 Childrens Medical Dallas

Jackson had a better day yesterday and a good night last night.  They have taken him off of his O2 and IV and he hasn’t had a fever since late yesterday morning either! So the countdown is on for our release.  He is drinking well but not eating solids to well, so I don’t know if that will keep us here or not.  So we are praying that he eats so we can go home!!!!

Stephanie and I have conquered the pull out chair we are shutting our eyes on.  It’s not really sleep since we wake up with Jackson and nurses several times a night.

Our Healer

I know the writer of this song faked his illness, but this song ministers to my heart every time I hear it.  It really has become an anthem that I sing, to myself, every time Jackson gets sick.  The words are so powerful and expresses so much of the things we feel and pray for Jackson.  But it reminds us of where our hope and healing lies!!!

Jackson Update #4 from Childrens Medical Dallas

We made it through the night after a scary beginning.  Jackson fever spiked to 103 at about 8:30 and took awhile to come down.  Early this morning the nurse put him on an IV drip because he didn’t eat or drink much yesterday or last night.  The good news (drum role please) is his fever has finally dropped!!!  Our goal today is for him to take in fluids on his own so he doesn’t need the IV, and to get off of the Oxygen by maintaining a good level!

Right now he is sleeping.  Seems to be sleeping ok but everything is still hooked up to him.  We will have to wait and see how he responds without those things.  We are still waiting on the swab test they took yesterday to see if he picked up a virus.

Stephanie and I are very tired!  Personally, I feel like I have been hit by a bus, a big bus at that.  We are trying to get sleep when Jackson sleeps at night.  Last night I think everyone got about 5-6 hours since Jackson slept for that long without waking up.  Lucky for us Stephanie’s mom came to town and is watching Josiah.

Thanks for all the prayers and please continue to pray for us!

Jackson Update #3 Childrens Medical Dallas

Well today didn’t go like we expected.  Jackson has kept his O2 on most of the day.  When they take it off his level drops so they have to put it back on.  They tested today to see if he picked up a virus other than the croup he has.  At this point it seems like the original reason why we were here has become secondary to the condition he is in now.  He has slept all day and has to be held by Stephanie or myself.  If not he cries.  The Nurse sucked his nose and throat to remove some of the mucus.  It made him very upset and seemed to have a little affect.

So, we go into the night with a lot of questions and not a lot of answers.  They did a swab test today and we will get those results in the morning.  They have pretty much put him in a quarantine set up, doctors, nurses and visitors have to wear mask.  Kinda reminds me of ET but not that extreme.

The doctor just came in and asked if he Jackson was RSV positive.  So they said they will continue the O2 and and suction all night.  Sounds like tonight isn’t going to be fun!!!

His fever just went up to 103.  For Jackson that is beyond the danger zone for seizures.  It’s starting to come down now we have to keep it down so we don’t have to worry about seizures on top of the other stuff!  Please pray everyone gets some much needed sleep!!!!

Jackson Update #2 from Childrens Medical Dallas

Update, Jackson is in a regular room now, things looked like they were getting better last night, until about 11:00pm when he started having some difficulty breathing and they put him back on O2.  We were hoping to go home today but have been told we can’t leave until Jackson is eating on his own (which he is not doing), off of O2, and has been monitored in both a day and night setting.

Today, he acts like he is sick.  He wants to be held all the time, which is not like Jackson, and his eyes are red and puffy.  His stomach seems to be bloated, it’s really stiff, from what we think to be air.  But we are not doctors just parents.  They are getting ready to suction his nose right now.  The nurse agrees that Jackson looks worse today than yesterday.  So I don’t exactly know what that means yet.  I guess we will see how the day goes . . . kinda scary to be honest!

We continue to pray for God’s healing, strength, perseverance for ourselves, and wisdom for the doctors!  We are so thankful for friends and family!

Jackson ICU update

As many of you know at the conclusion of the Grace Fusion Bowl during the Chili Challenge, Jackson had a seizure while at church.  His seizure only lasted a bout 5 minutes but his eyes didn’t look normal.  We took him to to the ER at Children’s Medical Center Plano.  While there, Jackson had another seizure.  This happened while they were poking him trying to get blood.  They poked several times, very frustrating when they turn your child into a pin cushion.   After about 2-3 hour in the ER with several nurses attending him they transported us to the ICU at Children’s Medical Center in Dallas.  I guess seizure + croup = ICU

We have made it through the night, Jackson is still fighting a fever, up and down, up and down.  His room is a refrigerator.  The attendant says that Jackson will be moved to his own room this afternoon.  We will be here at least another 24 to make sure he transitions to oral meds ok.

Both Stephanie and I are tiered from the fun football tournament yesterday.  We have one champion in the family.  Stephs team took first place in the girls division.  Unfortunately, we didn’t get the luxury of sleeping in our own bed, Stephanie, got the luxury of sleeping on the fold out chair in his room and I got the not so awesome recliner in the waiting room.

Thanks for all the prayers and texts.  It really speaks to our heart and is so encouraging to read the words and see the support.  Things like this make you feel isolated and lonely, something the enemy takes pleasure in.  However, seeing these just reminds us of Gods love and Faithfulness to us.

I will update my twitter (check the side bar for updates, or follow me as a friend) and facebook more often than this blog so check there so you can know how to pray as things arise!

What a Day – Family Fun, Cussing, and a Seizure

Yesterday started as any normal Friday does, everyone sleeping in a little, before the day get off to a start.  Stephanie had the pleasure of having lunch with Kristy who has been a huge encouragement and blessing to our family, while I had the pleasure of hanging out with the boys at Chick-fil-A FOREVER.  No it wasn’t that bad.  The boys had so much fun!

From there we went to visit one of our students in the hospital.  If you will join us in praying for Brittany Stene, that would be awesome.  Brittany for the last year has been battling cancer and now has to battle a blood clot in/near her heart.  Praying with and hearing their story made Jackson seem very healthy.  Just reemphasizes that everyday is a gift from God, and one that should be cherished, enjoyed, and put to good use making the most of the opportunities presented.  I don’t know all that is in store for Brittany, but i do know that God is growing her faith and using her to grow the faith of her mother as well.

Since we were in North Dallas, we decided to make our 2nd visit to North-park Mall.  This time was much different than the first visit in the fact that you could park, and walk through the mall peacefully.  We ate at PF Changs which has become one of our families favorite restaurant.  The boys love the chicken fried rice.  As we walked the mall, we did hit up some stores.  I found a good deal on some sweat pants that I wanted to try on before I bought them.  I take Josiah to the dressing room with me and as we are talking I am trying on the sweat pants, without missing a beat Josiah looks at my sweat pants and says, “Dad, you can’t buy those they are to f****** long!” . . . . . . . . yeah, that’s what I did also.  I thought maybe I had not heard him correctly so I asked him to repeat what he said!  Yep, he said exactly what I thought he said.  I know what you’re thinking, Yes, I am a pastor, and yes, he is a pastors kid.  I told him that’s a bad word and we don’t talk like that.  I tried to get him to tell me where he heard that but he couldn’t answer.  So, we are in the process of evaluating how and where he could be picking up language like this!

Once we got home, we put the boys down for bed and then Jackson decided to have a seizure.  This is the first time that I felt like I knew what to do.  Jackson’s seizure only lasted for 3-4 minutes, it’s still 3-4 minutes to long.  After his seizure was over we took him to the ER at Centennial where he had another smaller seizure as we were walking in.  The doctors were great.  They put him on oxygen and gave him some Valium.  After 3 hours we were able to go home.  We don’t know what the nexts steps are.  Jackson has had a seizure every month at the first of the month now the last three months.  We thought we were one the up and up, but I guess we now have more questions that still need to be answered.  The Good news, Jackson is back to his normal self and already getting in to things he is not supposed to.  Please continue to pray for us as we continue the journey of finding out why he is having repeated seizures and/or get his medication under control!