Fever free

Today has been our very first fever-free day (so far), since a week and a half ago. We are still assuming the low-grade fever he's been keeping for the last four days is due to his teething.

Thanks so much for all your thoughts, emails, warm wishes and prayers. We can feel all of them.

By the way, we DID get to go to the hockey game a couple nights ago. My sister-in-law, Kendall, came over to keep Sam and they did great together. She's so confident and very competent with taking care of him - we all did fine. I was quite sad the Rangers lost.

It was interesting to go to a hockey game in North Carolina. Just like everything else in Raleigh, it was family-friendly. Normally, in New York, hockey games were the least family-friendly event you could go to. Fights broke out between fans, as well as on the ice. But, this game was geared towards families. It was probably the last bit of culture shock I'll experience from my move down from New York to North Carolina (which happened 14 years ago this month).

Leave

I know there has been some speculation on what our future will look like. It is with great sadness that we have to announce we are taking of leave of absence from our work with the company. This means that Bill is officially looking for work, so that when our stateside assignment time is up at the end of March, we will begin a new transition in our lives. We are currently asking for a one year leave of absence.

Hopefully by the time Sam is three years-old, he won't be experiencing as many high fevers. At that time we will re-examine the locations that Sam will be able to get the best medical care around the world.

We have no idea where God is leading, but we know His hand is on our lives. It will be difficult to start from scratch here in the US, but we know God will provide.

We will genuinely miss our work in East Asia and are intent to continue God's call in working with the people of East Asia, no matter where we live. Please write us with any questions or concerns you may have.

Please continue to pray for Sam's health and also for Bill on his job search.

Blessings,

Teesa and Bill

Hockey Tickets

Anyone want to buy two hockey tickets to see the NY Rangers play tomorrow night?

We thought we might get a PICU nurse to come and sit with Sam, but that has fallen through. We're still debating, but we don't know that we'll feel comfy with anyone else watching him, so soon after having fever.

Under 99F

We took Sam to the pediatrician's office this morning, only to learn that there wasn't a single doctor in the whole building. Our normal doctor was out for personal reasons, so we saw a nurse practitioner instead.

Sam's cough is bad around the 1am-hour, which, according to the doctor we saw on Friday morning, sounds "croupy" (just like a past comment mentioned it could be).

Fortunately, it's all in his head. No, I am not saying Sam is making it all up, but I am saying it hasn't spread to his lungs. Praise God. Also, I took my thermometer with me this morning, because yesterday I was thinking, "this can't be right. Sam can't still have a low-grade fever after a week of being sick and STILL being on meds." As it turns out, my thermometer is working perfectly. I was a bit sad about this, but I was thrilled with his temp at the doctor's office. Are you ready for this? 98.7F

Plus, I stopped giving him Tylenol and Motrin in the wee hours of the night. So, that's no fever without meds. I am thrilled.

Sam's still got serious congestion and a bit of a cough, plus about four molars are coming through at once. I'm thinking we might be giving him Tylenol and Motrin again for his discomfort, but not for fever, hopefully.

Sounds like he's awake from his nap. It was a nice long one, so I'm hoping he'll be very pleasant over the next few hours.

Thanks again for your prayers. Keep them up!

Emails from friends

We have gotten so many encouraging emails lately. It is so awesome to know that so many folks are looking out for Sam's needs and praying for his healing.

I have to give this testimony, since it is so important to the email I'm going to copy below. Several years ago, I met one of my neighbors while walking my dog. We lived in an apartment complex where most everybody was gone during the day and I had a little bit of a difficult time meeting other women. Well, this one neighbor was exactly my age (less than a month apart) and she had a six month-old who loved to play with our puppy.

We barely knew each other when I heard a knock at our door. She had locked her key in the apartment and asked if she and her son could stay in our apartment while she waited for her husband to return. It happened to be Thanksgiving Day, so we were able to share turkey with her (the first turkey she'd ever eaten) and also some stories about why we are thankful. Essentially, I told her I was thankful for receiving Jesus as my Lord and Savior. I told her I could tell her more about it, if she wanted to know more. She definitely did.

The next Monday morning I showed up at her apartment and shared with her about how her life could be changed forever by confessing her sins and professing that Jesus lived on the earth and died on a cross for her sins and raised to life again three days later. She couldn't wait to believe and we prayed right then and there in her living room. She immediately had questions about how God could help her in her marriage,because she was having terrible problems with her husband who drank and smoked and didn't respect her. I led her to a very specific verse in the Bible that talks about a woman leading her husband to the Lord through her actions. I ministered to her for a few months after that, reading the Bible with her and enjoying fellowship together. Unfortunately, we had to move to another city before her husband, or any family members believed.

Flash forward to a couple years later: She led her entire family to the Lord (her atheist sister, buddhist mother, and her husband)! Her husband quit smoking as soon as he believed, he also led his father, who died only months later of cancer. When Bill asked him if it was hard to quit smoking, he laughed and said, "no, I believed in Jesus and put down my cigarette." Easy as pie.

We got an email from him a couple days ago. Apparently we are still on their minds, as they are on ours. I wanted to share this email, because it shows how many people (in so many languages) are praying for our family right now. What a testimony to the Lord's blessings in our lives!

Hello, I was with a mutual friend today and asked about you and he told me about Sam's condition. I hope the Host is able to lead you and keep your child safe. Advocates, Jesus is versatile, we may trust Him, the Host is willing to keep you all safe . Also thank the Host He chose you to be His subjects. He causes us
together, without fear, to confidently approach His face. He knows all our needs. Thank the Host He tugs at our hearts.

Overnight

Sam maintained a fever of 100.4 all day yesterday. Just before bed it went down a bit. He had a terrible coughing fit around 2:30 in the morning that ended in him vomiting. This morning he's had some diarrhea too. His temp is still a low-grade fever.

His disposition seems pretty good despite all of that. I am really hoping the antibiotics are going to take his ear infection away today, and with it his fever.

Please pray for Sam today. Please thank your Sunday school classes and church for all their prayers this week.

Happy Birthday, Kendall

Today is my sister-in-law's birthday. Happy birthday, Kendall! January was full of birthdays for our friends and family. Erica, happy belated birthday to you too! Dad, I am sending a package on Wednesday with birthday fun. Jared, thanks for spending your birthday in the hospital with us.

Sam woke up this morning with a 99.1F temp. Woohoo (oh, and I take it rectally, by the way). He seems so much happier this morning. He's sitting in his boppy in front of the TV right now. I just heard him laugh because Tigger has the hiccups. I've never heard Sam laugh from something he has seen on TV - it really tickled me.

It was a good night for us. We woke him up for meds and he woke up to eat only once, on his own. He did have quite a bit of coughing at one point, and when I went to give him his Tylenol, I realized he had coughed some stuff up.

We hope to have a good day today. Please pray with us.

Edited at 10:21 to add: I just took his temp again and it is 100.4F. I don't know what is going on his body. I assume when he is playing it raises his temp, but we really don't want any fever spikes.

So, again, please pray for a low temp today and the rest of this illness.

100F

About two hours ago, I checked Sam's temp and it was 100F. I checked again before Sam was asleep and it was 99.1F. So, we're still up and down. Please continue to pray for his temp to remain low.

Saw the Doctor

Okay, we saw the doctor this morning. She was extremely helpful. She saw that Sam has an ear infection, which is probably why he still has a low-grade fever. His throat is red, probably from drainage. We are going to start giving him some antibiotics for the ear infection and continue giving him Motrin/Tylenol for fever.

Thanks for your prayers. He looks pretty pitiful, but he has bursts of energy, as I've said before.

God is in charge here, and we are well aware of that. Please continue to lift Sam up, that he would rest well and be healed of his illnesses.

Doctor's Appointment

Sam sounded a lot like a seal when he coughed last night. He kept barking and barking. This morning it sounds more liquidy. We've got a pediatrician's appointment at 11:20 this morning, to make sure it hasn't gone into his chest. His temp was 98.8F this morning. Praise God.

Sick

Sam's fever was still holding at 99.9 before he went to bed. He has lost his voice now and when he coughs it sounds like it's coming from deep in his chest.

Join with me in praying for a healing for Sam from this sickness.

I will call the doctor again in the morning to see if we can ease his discomfort any more and keep this from becoming bronchitis (if it isn't already) or pneumonia, at worst.

Still has a fever

We just took Sam's temperature and it is 99.9F. Please continue to pray for a low temp. Please.

Fever

Yesterday, Bill and I accidentally allowed Sam's medication to lapse one hour too long (we were supposed to give him Tylenol AND Motrin at 4pm and at 5pm realized we forgot). His fever went up to 100.3F.

I suppose the medication is still quite necessary, and we will continue to administer it until we see NO signs of fever. This morning, with the appropriate medication, his temp is 99F.

He is very congested and when the medication wears off, he is quite grumpy. He still has big purple circles under his eyes and is visibly weak (stumbling when he walks). At best, he has energy spurts where dancing is necessary, but will crash quickly afterwards. I assume the dancing necessity comes from Bill's side of the family.

• Pray for Sam to be fever free
• Pray for Sam to be illness free
• Pray for us (I am beginning to feel sick)
• Pray for our neighbor, Eden, who is almost one year old. She apparently has caught his virus

Amazing

Have you been reading the comments on our blog? I am amazed at how many people are praying for us. The comments page is just a sampling of the encouraging notes we are getting from around the world.

I didn't mention this before, but Dr. Buck, Sam's cardiologist, said there are partial results of the DNA blood analysis that was done in September. Dr. Buck said that Sam's form of Brugada Syndrome is not the most common form. In fact, they have not seen his form before. That's not saying too much though, knowing that they only discovered this disease in 1992. But, as a friend of mine said, "it is amazing to hear Teesa talk about how rare Sam's case is- it reminds me that God's hand is in this situation completely." I've said it before, they usually discover Brugada through an autopsy, so we know God's hand is all over this.

We went to see Sam's pediatrician today. It was a great visit, filled with good information. I can see how Dr. Mike is trying to mold us into parents who are not too overly-concerned for Sam and who don't overreact to every little thing. I'm sure he sees a lot of that in his profession. He has encouraged us to continue with our plans to go to a hockey game next Tuesday night. We are both really really nervous about it, but we think it might be the right thing to do in order to give ourselves a "break" from the stress we have been under. Dr. Mike even recommended one of his nurses to babysit for us, just to make sure Sam is in good hands. Our neighbors (who witnessed everything on Sunday at home) have also volunteered. We will think about it and make an educated decision this weekend - let's see how things go.

Sam is going to continue on his Motrin/Tylenol regimen for another 24 hours. We are going to move the Tylenol doses to every six hours (from four) tonight. Please remember him - pray that he doesn't get a fever again.

Pray also for his discomfort. His eyes are watery, nose runny and apparently he has two molars coming in that Dr. Mike said are quite painful.

We are beginning to give Sam multivitamins and high doses of vitamin C to help his immune system. Also, Dr. Mike said we shouldn't let anyone be around Sam who has even a hint of a sickness. Before this we were careful with folks with fevers, but I guess we have to be more strict from now on.

We told Dr. Mike that we could order a bubble to be erected around Sam, but he doesn't think that's necessary. Only practical measures are needed right now - washing hands, no church nursery and no sickness around him. I think we can accommodate these requirements, but I may need your help. :) I am a bit of a softy when people are melting around Sam because of their love for him.

I will keep you posted - right now Sam is chewing on a wooden mallet his great grandfather made for him and sitting in the middle of the living room floor. He has bedhead (when doesn't he?) and is wearing PJ bottoms and a little blue cardigan sweater. He's not eating great, but he has taken to his sweet potatoes again, which seems to be his veggie of choice after sickness.

Blessings.

The pictures are from the morning he was admitted to PICU. Again, we had absolutely NO indication he was sick. He was super happy to be outside and enjoyed the snow day.

Another Day

We had another rough night, but mostly because we're still waking Sam up to give him Tylenol and Motrin. He has really been bucking us giving it to him. Our night went like this:

8pm Tylenol/put Sam to sleep
9pm Sam woke, Bill put him back to sleep
10pm Motrin/try to put him back to sleep
12am Tylenol/actually, he went right back to sleep on this one
4am Tylenol & Motrin/beg Sam to sleep again
6am Sam woke, nursed him back sleep
7:30am Sam is awake for the day
8am Tylenol

So, we've got a 10:10 appointment with his pediatrician. I haven't taken his temperature this morning, but he is very very cool to the touch. He seems very comfortable, compared to his waking hours yesterday morning. He is sitting down watching Bigfoot (a cartoon he loves).

Last night he began eating a little more. I tried to feed him breakfast already this morning, but he doesn't want to eat. I don't know what this day holds for us.

He learned to turn himself in circles while dancing last night. I was surprised, because he was falling down a lot (on his back) and losing his footing yesterday during the day. Then last night, after dinner, he got a little energy burst and decided to dance with it. We got some video that we'll try to post later. Very cute.

• Please continue to pray for Sam's body to be healed
• Pray for our family too, that we will make good decisions
• Pray that we will follow God's will for our lives.

Thanks, again, for your comments and emails. Every one of them means a lot to us. I haven't been responding, however, since most of the time I'm on top of Sam wondering why he is crying or what's wrong. Sorry about that.

Morning is here

After a rough night of Sam waking up every two hours for cuddles, morning has finally come. He awoke with a 98.6temp and right now it s 99.6. We just gave him some mre Motrin, so hopefully that will come down shortly.

He is on his way to a nap too. It should only be a few more moments - I am currently typing with one hand, so please excuse any mistakes.

I wanted to let you know what his cardiologist said yesterday.

The defibrillator saved Sam's life in the three instances on Sunday. I mean to say, Sam is alive today because God Almighty revealed to us in August that Sam's heart is very different. And He revealed it by extending Sam's life and granting us the opportunity to know him and love him more everyday.

And we know that all things work together for good to those who love God, to those who are the called according to His purpose. For whom He foreknew, He also predestined to be conformed to the image of His Son, that He might be the firstborn among many brethren. Moreover whom He predestined, these He also called; whom He called, these He alos justified; and whom He justified, these He also glorified. What then shall we say to these things?

If God is for us, who can be against us? Romans 8:28-31

We were very concerned for Sam's life on Sunday. We are still a family in crisis, but your prayers have greatly comforted our souls. We can feel God's presence.

• Pray for healing in Sam's body
• Pray for our family, as the Lord leads
• Pray for my parents in Thailand, who are struggling

The cardiologist said Sam had something like 13 episodes that he came out of on his own, without the need for a shock, on Sunday. Each of them lasted about 1 second. It is becoming apparent to us that he knows what is happening and is quite uncomfortable. Also, his defib is in his belly (no room for it elsewhere in his tiny body). The doctor said that is the reason that his entire body gets rigid when it shocks him - because it is affecting a lot of the trunk muscles in his belly. It is very painful for him.

Sam is now much more aware of everything that is happening. He was greatly distressed in the hospital room and as soon as any nurse would come in he would scream. He had to have a catheter, an IV port, a chest X-ray and multiple medicines in order to determine what was wrong. That doesn't include the painful episodes of his heart. So, factoring everything in together, you can imagine why he is waking up every two hours needing cuddles.

Please also pray for his rest. I just laid him down in his crib and he has woken up again, but he's saying, "uh oh" and jumping around. So, I imagine he's having a little fun being at home again.

I'll keep you posted.

Fever down

We have just arrived at home.



Sam's fever has been down today (as low as 95.9 - you might be praying TOO hard! :))



They sent us home with instructions to keep medicating him with Tylenol and Motrin alternately and we have already set an appointment with his pediatrician for Wednesday morning. They still think this is viral.



Sam is not feeling well and it is extremely obvious now. Please pray for him to feel better and to recover quickly.



Thanks to everyone for praying. We still need it!



Teesa and Bill

Morning

It's about 7:20am right now. We made it through the night. Sam is a testimony to the power of prayer.

I held him in my arms until about 4:30 this morning, when I switched off with Bill. It was then that I realized his fever had broken - my arm was soaking wet where his head was resting. The nurse took his temp and it was 99F. As I said, it's a testimony to God's hand in all of this.

All of his labs came back fine. They are assuming that he has a viral infection. As long as we can treat it with Tylenol and Motrin (alternately), Sam should be fine.

My eyes have been glued to the external EKG they've had him attached to. When he's awake, his heart rate is around 130bpm, when he is asleep it hovers around 100bpm. That's where it is right now. Anything below 250 is a good thing.

They have a little "hotel" room downstairs where Bill and I have traded places getting a couple hours of sleep. I just returned from my shift and I haven't spoken with the nurse or Bill yet, but Sam is sleeping in his daddy's arms right now. All is well with the world.

• pray for no more fever
• pray for a quick recovery
• pray for wisdom for the doctors
• pray for Bill and I, who are on an emotional roller coaster ride

Blessings and thanks for your emails and comments. We appreciate them.

Pray for Sam

Sam is in bad shape. He had a shock from his defib earlier today at home, with NO warning that he was even sick. Apparently he had a high fever and we didn't know it. He was playing when his heart started racing and got to just over 300 beats per minute.

We called 911 and came to the hospital. It was here that we learned he had had a couple events before and after the shock that his heart was racing and his body was able to get out of the bad rhythm on its own. (Of course, God is watching over him.)

Once we were transferred to Wake Med's PICU to observe him overnight, he had another event where his heart rate went up to above 250bpm and then the defib shocked him. I observed that he had a few more events where the defib did not shock him, but he was scared and crying and I can't describe how horrible those events were for us.

He had a THIRD (you read that right) event while I was holding him about an hour and a half later where the defib shocked him again.

All of these have been APPROPRIATE shocks.

They are now trying to determine what is causing the high fever. Remember, any fever above 102 for Sam is going to get his heart racing and has potential to cause problems. He is obviously feeling bad now and looks bad too.

• pray for Sam's fever to get down and stay down
• pray for the doctors to know how to treat him
• pray for us, because we are greatly concerned

I will update the blog as I know more. We are in great distress right now, and we ask that you will think of our family as you go about your day and night.

Teesa and Bill

Thanks to Joy3!

We were thrilled to host a Christmas party this year at our home. Since our church has been gracious enough to allow us to live in the Clina Bailey House, we have to thank them for allowing us the opportunity to host the party in the first place!

Shelley G. had a great idea - she asked the class to bring ornaments to decorate our tree, and trees of future residents here. It came at such a perfect time, since I was feeling a little homesick for all my great ornaments, which are still overseas.

So, everyone from the Joy 3 class brought an ornament and we hung them all on the tree. As you can see from these pictures, they aren't just any ol' ornaments - they are all beautifully unique. Bill took some photos of them.

I packed them up today and put them in a box for future residents of the house. I only hope they will enjoy them as much as we did! I also placed a short note inside the box, honoring those who gave the gifts.

Thanks, again, Joy 3 - and thanks for your loving gift as well. You are a real blessing to us!

Bay Leaf Fire Station

We got to go over to the Bay Leaf Fire Station this evening for dinner and to thank some of the folks who have responded to our frantic 911 calls. It was so great to meet Jeremy in the light-of-day and spend time with our friends David and Laurie. How many people get this kind of opportunity?


Jeremy was the very first EMT to see Sam at the very first call we made the day Sam had the first seizure. He's also a Christian and a member at a local church, the same church where one of Sam's Medtronic representatives is also a member. That Medtronic's rep pulled us aside at the hospital after Sam had his defibrillator implanted and prayed with us. There are so many connections and miraculous events that happened through all of this, it's obvious God's hand has been on Sam for a long time!

Sam with Jeremy.

Sam with Laurie and David.

They are members of our church and David is a fire fighter. The week Sam was diagnosed with Brugada and I was diagnosed with meningitis, and the subsequent weeks, Laurie was instrumental in us surviving. She organized all the food for us PLUS she made a little stuffed donkey for Sam that he loves playing with. They are AWESOME folks.

A couple weeks ago, when we had to call 911 again because Sam's defibrillator fired, David was on the scene first. He gave Sam oxygen. I didn't even recognize him at the time - I think I was in survival-mode and only focusing on Sam. It was neat being able to put all the pieces together later though.

Sam got to sit in the engine and turn on the lights too.

Looks like this hat might be a bit too big.

He walked all around the engine. He is so little compared to the engine!

Check out this tire, Dad! I can see myself!

David let Sam get into the side of the engine and showed him some of the cool tools inside. Sam fell in love with David tonight, and was already head-over-heels for Laurie.

Check out the hose!

Their jackets are cool too! Everything was so fun.

Thanks, again, to the folks at Bay Leaf and Six Forks fire stations! You saved our son's life more than once.

Hand-foot-and-mouth disease

That's the name of the new virus Sam is working on. Can you believe he's sick again? He woke up on Christmas morning with 101.1 fever and vomited at breakfast. Add to that a food-strike and sleep-strike, and you've got one stressed-out family.

Plus, the doctor told me today that he's got some big honkin' teeth coming in, which will add to the no-sleep portion of our troubles.

So, the question of the week: How long can an entire family function without sleep?

By the way, he's at the tail-end of the virus, so he's getting better. He's just got some ulcers in his throat, but doesn't have any other symptoms right now. Pray for him!