Another Childhood Virus

Ugh. I guess you know what I'm about to say.

Pray.

Sam has a low-grade fever and is coughing and wheezing some. We went to the doctor and they did a CBC and we learned that Sam's lymphocytes are elevated. This indicates a virus. So, his pediatrician called the doctor on-call and told him the situation. Everyone is on-alert in case something happens (e.g. a fever spike and a defib discharge, which will take us to the hospital).

His throat is red, which is probably why he stopped eating yesterday. His temp is so low - 100.6 - so I'm not too worried just yet. Let's just unite in prayer to keep it low!

I talked to his doctor about how hard I'm trying to clean his hands, but continue to take him to the park and other fun places. He was very happy with our situation and said to keep it up. Therefore, I can only conclude that I am not guilty of exposing him to something unnecessarily, but instead, I am keeping him social and helping him to develop as naturally as a 19 month-old.

Hey, at least it's not strep (negative culture today) or hand-foot-mouth disease!

We have also looked for houses, continually, and there still doesn't seem to be much in our price-range that is habitable. We have one house on our hearts that we are praying through right now. Please continue to help us!

Thanks.

Other People

I've been noticing a trend in how other people view Sam recently. I get a lot, and I mean a TON, of comments about how Sam is more susceptible to getting sick than other children. It comes in many different ways, like one woman told me, after Sam drank from her son's sippy cup, that her son is "tough" so she wasn't worried about him (i.e. Sam isn't tough). Other people make comments about us not going to certain places because Sam's immune system is compromised (like the Children's Museum in town).

Now, I realize that I have a lot to process regarding all of this. I also realize what opinions I form now will probably follow me the rest of my life. Hopefully I'll be able to change according to different situations though. Whatever the case, I feel very defensive.

So, let's get some facts straight. Sam does not have a compromised immune system. He is, in fact, less sick than a lot of children his age. The doctors have even done a SED test on him to see how his immune system is and it is absolutely perfect (the lower the number the better, and his is 0). The issue is that when he does get a common cold or another type of virus and gets a fever along with it, his heart starts beating rapidly.

Also, I believe Sam is one of the toughest kids I know. He can take shock after shock directly to his heart and stops crying about two seconds afterwards. He falls down and doesn't cry, unless he's overly tired. The kid is very tough.

Now that I've gotten that out, let me apologize to any of you for being short about it recently. I feel like a judgement on him is a judgement on our family and I really hate to hear things that aren't accurate concerning him. However, it is impossible for anybody to have the big picture anywhere near correct. I don't share everything that happens with anyone - if you were at the hospital and shared an experience with us, you MAY understand, but for the most part, no one is totally aware of what has happened besides us and his doctors.

So, I need to change my attitude of defensiveness. I'm sure that other families with these types of conditions have similar feelings and have worked through them. I know Sam is always going to be a "special needs" child and that his teachers will always need to be aware of his situation. I also realize that I will never be able to put him in the church nursery or another place that is a petri dish of germs. That is definitely different from other children. He will never be able to play contact sports, because the ICD might get hit and it could damage it. But, the infectious disease doctor said to allow him to participate in all normal activities where I can be with him. So, a children's museum is a perfect place for him.

The infectious disease doctor, his pediatricians, his nurses and his cardiologist ALL said NOT to put him in a bubble, real or figurative.

I hope that I can be a very conscientious mother, who will be aware of the situation, but allow Sam to experience new situations and have a good time with other children. But, I also know Sam is not like other children and I am going to have to get used to that fact. It makes me a little weepy even thinking about it. He acts totally normal and is developmentally right on schedule. But, he does have limitations.

So, in summary, please forgive me if I have offended you recently by jumping down your throat about Sam's health. I am unsure of how to process all of my feelings right now, but I feel fiercely defensive about him. But, I am praying through it and working through it with others.

By the way, when I heard my new friend say her child was "tough," I responded emotionally to it. She didn't mean a thing about Sam - it was just something I was already sensitive about and it stuck with me. I know many of you are probably reading that first paragraph and saying to yourselves, "geez, I will have to be careful with every little thing I say with Teesa." The truth is, it's my problem for being over-sensitive. I know it's a problem and I'm working on it.

All Good News

Hi, it's Billy's mom again. I am pretty sure you can tell by now.
You will be happy to know that Sam is doing well, a permanent place to live is looking up and, drum roll please, Teesa has ordered Internet service.
I spoke with Teesa this morning as she was dressing a moving target. Sam is back to his bouncy normal self. As with most times that I speak with him Teesa tells him to tell Nana, that's me, hi. I don't recall ever hearing him say this until this morning. I got a big hi Nana, music to my ears. Yesterday Sam was at the doctor for a checkup. He got a good report, all seems normal.
As for the house, things are moving forward for them to purchase their new home. Won't we all be excited when they do? Teesa will have to tell you more later.
Speaking of Teesa telling you more later, it should be Thursday. I know you all are anxious to hear directly from Billy and Teesa. I also know they will be happy to have the opportunity to enter blog messages and to email you.
So with all of that good news I must tell you I will miss helping them by posting their blogs. It's been fun and nice but hope I won't have to do this again. I look forward to them getting settled and personally being able to keep you all informed.
Thanks again from Nana for all of you precious prayers and the opportunity to see God's mighty hand at work.

Update on the Klears

Billy's mom again. I know you should be able to tell the difference if it's me or Teesa or Billy.
First bit of information is that Sam has made it with no fever so far. Our prayers are still working. Sam has been waking up crying or crying in his sleep. Teesa and Billy think that he is having nightmares about his hospital visit. Wouldn't you?? I would. When you pray for Sam please pray that his memory of his hospital visit diminishes.
Good news on the house issue. I was told this morning that they have been told they will be compensated for the earnest money they put down. This is very good. They are now starting the house purchasing process again. They do have another house in mind. There are still a few issues to work out with all of this so they still need your prayers.
A personal note from mom. I spoke with both Teesa and Billy this morning. Although you can still hear a little fatigue and stress in their voices they did sound so much better. Sam was talking, that's great, in the hospital he had pretty much stopped talking. Hearing them this morning lifted my spirits and I know to hear that they are recovering will lift yours also.
Hopefully Teesa will be able to post sometime in the near future. She and Billy are so much better at this with so much more detail so I know you are looking forward to that.
Thanks for all of your prayers, thoughts and comments. Teesa is so happy to see all of the hits on the blog and the comments she gets back. Just shows how many people care and are praying.
Hope the next blog has even better news that this one.

HOME!

Yes they are home. This is Bill's mom again. Sam's temp is normal, he's eating better also. Please continue to pray his temp stays normal. Also please continue to pray for Billy and Teesa as they recover from the last week and for the housing situation. God has worked such a miracle with Sam over the past week. It is fantastic to watch His hand at work. The Klear's continue to need God's moving concerning Sam's temp and to show them the house He has chosen for them.
Thanks

Going Home

We should be leaving this evening to go home. Sam has ripped off his leads and was impossible to contain in his hospital bed. He is now sitting next to me on the couch. I tried to let him walk a little, but his legs are too wobbly and he can't stand up. I imagine that almost six days of laying in bed will do that to little legs.

His cardiologist here in Charlotte came in a spoke to us and we have a new game plan for treatment. Also, his pediatrician here called and spoke to me about what we can expect for the weekend (pending any unusual fever related to an ear infection or something else). We will continue to monitor his temps over the next few weeks and if he has low-grade fevers continually, we will come back and see the ID doctor here in Charlotte.

The cardiologist can't understand why Sam had such a high fever and plenty of them over the last few days but didn't go into VTAC. We absolutely attribute this miracle to the Lord answering your prayers. How do you feel to be a part of this? You helped spare Sam's little heart a trauma that would have been very painful. Thank you.

Blessings.

Adenovirus

We have an answer, finally. I think I said yesterday that one of Sam's nose cultures came back positive. It was the one called "adenovirus."

The infectious disease doctor came in today and said that adenovirus is the cause of Sam's high fevers. Of course, we know that any normal child could get high fevers and be okay, but Sam's heart is what landed him here. When he gets a high fever, his heart goes into an abnormal, very fast rhythm. Apparently, adenovirus causes children to get high fevers and have respiratory problems, just like he has. The quick swab of his nose came back negative, but the culture, that they have been looking at for four days, came back positive. He also might be developing an ear infection. Last night it was buldging, but today it is fine.

The ID doctor said she will be in touch with our pediatrician here alert him that Sam might have another high fever over the weekend due to his ear. But, he might not. It just depends on how his body heals.

They are probably releasing us this evening. We have weaned Sam's meds (Tylenol and Motrin) and are keeping a close eye on his temperature. If there is any rise or any fever, we will re-assess before this evening.

I feel good about all of this. I think the ID doctor knows what she is talking about and I feel confident that Watauga Medical Center will be able to handle us from now on (unless there's an even higher temp). The cardiologist said, "it is what it is," when he was talking about Sam's fever and his VTAC. He said it doesn't make a difference what the temperature is - a VTAC is a VTAC and Sam is going to have one with almost ever fever. We just have to sit by and watch - monitoring him closely to make sure nothing else happens (this means, go straight to the hospital).

Sam has been a different child today. He's still not eating like he normally does, nor is he drinking normally, but he's jumping on the bed and screaming "Mama" a lot. I think it's time for us to move on from here and go back to the rental at home.

Bill will be here after work, around 7:30 or 8 tonight and we'll likely leave after that. I will let you know what I hear. My phone is still not working properly, since Sam threw it down on Saturday (I can only use speakerphone on it). But, I should get my old new phone back tomorrow. Also, I won't have internet anymore once we are home. So, I'm not sure how you'll keep up with us anymore. Maybe I'll have some time on Saturday to break away and write. I'll post once more before we leave tonight though.

As always, keep praying. Sam is going to have a long road ahead of him whenever he goes new places or meets new people. The doctor said today that I STILL can't put him in a bubble, no matter what. She said he can play on the playground, in museums and even go to school when the time comes. But, no one is allowed to kiss him on the lips (save us) hands. And we need to wash them after every time someone touches his hands. So, if you see me bring out my hand sanitizer, it's not because I think you're disgusting. It's for his safety.

Blessings.

What's Today?

I don't even know what day today is. So, I'll just give a "Today" update.

Bill left for work about thirty minutes ago. Sam had an ok night - no fever, which is fantastic. But, his alarms kept going off all night. His pulse ox sticker kept falling off his toe and he couldn't breathe through his nose.

Something happened to me - I guess the week caught up with me - because I fell asleep and couldn't wake up. The alarms kept bothering me, but my eyes were so heavy, I finally told Bill that I couldn't keep up with everything and collapsed on the couch. I would wake up groggy and couldn't keep my eyes open. Bill had to take over. At some point I heard a commotion and saw that they were vacuuming out Sam's nose. He wasn't very thrilled about it. At that point, I crawled into bed with him and we slept fitfully the rest of the night. I would put saline in his nose every hour or so and that seemed to do the trick. At 6:40am, I realized Bill hadn't gotten up yet and yelled his name about 40 times before he woke up. I guess we're exhausted.

I haven't seen the doctor yet, but I'm curious to ask him about all of the strange rhythms we've seen in the last two days. Sam's been skipping beats and his pacemaker has begun working a lot.

So, keep praying if you will. Pray for healing of his little body from this cold that he's got. Pray for his heart to beat as a normal heart would.

I'll know about the CT scan later today. Also, just to let you know, his nose swab came back positive for a cold (viral). But, the particular cold he has doesn't cause high fevers like he's been getting.

Contrast

In preparation for his CT scan Sam had to drink about 6oz of a clear liquid refered to simply as 'contrast.' What that might actually consist of, I do not know. What I do know is that he did not like it. He has really not wanted to put anything in his mouth for a day now. He was, however, a real trooper and let Teesa give him little squirts from a syringe until it was all down. We all went to the imaging wing and once again he did very well in a hard situation. He didn't fuss too much as he layed in the scanner, Teesa held his hands and he shuttled in and out.

After the scan his face was pretty flushed and Teesa noticed that he was quite warm. We were concerned and wanted to get back to his room quickly. When we arrived the nurse took his temperature and it was up to 102.5 and we all sprang into action getting the cooling blanket, cool rags and Motrin. Only a few minutes passed and the head nurse was in to tell us that this was a normal reaction to the 'contrast.' His fever is coming down, but the cooling blanket is still on. On the other hand he is quite congested. Thank you all, for your continued prayers.

An Hour Later

I know I just posted, but the doctor just came in and I wanted to give a quick update.

Dr. Smith, his new cardiologist, was very encouraged to see Sam's temps low overnight. While we were talking, Sam's heartrate was dipping so low, his pacemaker was pacing him. We're not sure why it's doing that - Dr. Smith said it could be that his upbeat wasn't fast enough or that he is missing a few beats, but it just means the defib/pacemaker is working.

He also said that one of Sam's tests came back high - showing that he has inflammation. All that means is that he could have a bacterial or viral infection. So, we still don't know anything more than we did before.

I asked again why Sam has not gone into VTAC even though he's had a high fever. This is still perplexing him (though we know why - because of your prayers). Dr. Smith thinks it is likely that there have to be certain factors involved with his body in order for the fever to cause VTAC.

That's all I know for now.

Wednesday Morning

We made it through the night with no events. Bill and I took turns sleeping and the nurses came in every hour to check his temp. He has maintained a normal temp all night long. Can you believe it? I can. We had such faithful prayer warriors praying for him, his fever, his heart and for us. We greatly appreciate your prayers.

Today they will do a CT scan and the blood work is still out. I will let you know as I do. Keep praying for no more fever, to discover the illness and for his heart.

Since I finally have a minute to sit down, I will tell you something else that is going on in our lives. We were going to close on a house here on Friday (two days from now), but got word on Saturday (on the way to the doctor) that the loan won't come through because the sellers aren't cooperating. We will most likely lose our retainer as well, due to a poorly written contract.

We've learned a lot through this process. I have been laying in Sam's bed praying about the housing situation since 3:30am. I don't know what is going on, but I believe God is telling me that we should not pursue this house anymore. Bill had already come to this conclusion a few days ago, but I am just now getting on board. It will be difficult to lose the retainer, but I believe we are supposed to put a bid on another house. We had been praying about this other house from the beginning and chose the second one because we believed that is what we were supposed to do. I almost woke Bill up during the night to talk to him about all of this, but I decided it would be best to let him sleep. I'm curious to know what he thinks.

Please pray about the housing situation too, as you remember it. It's obviously not the most important thing going on in our lives right now, but it's still important nonetheless.

I can see the sun rising behind the mountains outside our window now. The hospital is bustling with more noise as nurses change shifts. Sam and Bill are breathing deeply in their respective beds. Sam's heart rate is 85 beats per minute. I know he doesn't have a fever because of his heart rate.

Thanks for praying. And thanks for posting - we read your posts all day long, when we're not in the middle of a harried crisis. We are reading them over and over again. We love the encouragement and to see God unify His family around the world. How awesome is that?

From Sam Himself

This is from Sam:

h ,mj nx / fffffffffffffffvh vvvvvvvvvvvvvvvvvvvvvv v b

We're at another good point of the day. The fever that came this afternoon was the highest Sam has ever had. We're lucky he didn't have a seizure.

He was so dehydrated that it took three times of sticking him before they actually got it into a vein. It was devastating for everyone. I cried almost as much as Sam did. But the hospital staff is great and the nurse from the cardiology clinic was absolutely awesome. When I ran down the hallway to alert her to his high fever, she immediately put her arm around me while walking me back to the room and asked me if I was ok. Once I responded, she started barking out orders to get the fever under control. It took one hour of wet, cold rags on his head and on his body before his temp came down to 103.5.

My cousin Valerie was here for it, so I immediately asked her to post something. Thanks for your quick-acting prayers.

We are now looking for Typhoid, Malaria and anything else the ID doctor could think of. They're doing a CT scan tomorrow to see if it actually IS the defibrillator that is causing the problem. We have to wait until tomorrow because he'll need some sort of meds intravenously and his veins are too weak to support them right now.

After he broke his fever, he sat up in bed and asked to eat. He played with toys and is now watching TV in my lap. The ID doctor came in and we introduced her to Sam. She's seen him three or four times, but he has always been laying flat very sick. He's still sick, but is on one of the mountains right now.

Keep praying. We expect another high fever tonight. Hopefully it won't continue to trend of getting higher and higher as it has been doing. That's one of the reasons the doc is looking at Malaria. We're just grasping at straws, but who knows.

Thanks be to God for answering our prayers again. We are exhausted and are taking shifts tonight. I hope I can get two hours of consecutive sleep, since I have only actually had two hours in the last three days, I'm looking forward to it. I just hope we don't have another fever.

Blessings!

Sam update 4-15-08

I am Valerie Phillips Teesa's cousin, writing for Teesa. Sam's fever was 104.4 at 2:15 this afternoon. The doctors are scheduling a CAT scan and doing more blood work. They still don't know what is causing his fever to spike, and are looking for anything/everything. We give God praise that his heart did not go into V-Tac when his fever was so high. Please continue to keep Sam and us in your prayers.

Wow

Last night was by far one of the roughest nights we've ever had. I know it was hard for many of you too, as you have been on your knees for Sam.

But, our God is good. He is merciful. He is loving. And, we felt His love for us last night.

Sam's fever broke some time around 4am. His defib never fired. His heart never went into sustained VTAC. At about 4:30am, he sat up did a sign for cheerios and asked for some whole milk. He also asked to watch TV. Him sitting up was a big deal, because he hasn't had the strength to sit up on his own since Saturday. He watched TV until about 6am, when he laid back down and nursed for a while, then fell asleep. He slept until about 8am when his new cardiologist came in.

Here's the scoop on Sam's general health - his right side is still sounding "diminished." The doctors are looking at bronchitis or pneumonia. His nose is very congested. His temp has been running between 98F and 99.6 (right now) since about 4am.

We feel relieved and are wondering if that was the climax at the end. We have asked the nurse about finding a quiet room somewhere where we can take turns sleeping. It's been difficult not to sleep since Friday night for me.

Thanks for your prayers. Keep on praying!

Teesa and Bill

ANSWER TO PRAYERS

Bill was just reminding me how the book of James says that we must pray expectantly, asking in faith and not doubting. We have called upon our prayer warriors tonight and God has answered your faith. Sam's heartrate has dropped 25 bpm in the last ten minutes. He is now consistently beating at 125bpm. It's still high, but it's WAY lower than it was and his rhythm is returning to normal.

It just hit 119. Bill is asking for 115. Thank you for praying. Please pray that this fever would NOT come back. Pray that God would protect his heart and send His angels to keep gaurd over this boy.

We thank God for each one of you.

Teesa, Bill and Sam

103.4F VERY BAD

We are sitting by Sam's bedside watching his heart beat very rapidly. The nurses want to call it VTAC because the rhythm looks like a true VTAC, but it's not actually beating quickly enough to be considered VTAC. As he is asleep, his heartrate is varying between 139bpm and 196bpm.

Please pray for him. The cooling blanket is on. Cool rags are on his body. We are in tears.

Please pray that God would relieve him of this fever. Praise God that he has not suffered a true VTAC as of yet during this particular fever spike.

Pray.

Update - Monday Evening

Bill stayed with us at the hospital today instead of going to work in Hickory, where there is a conference he was supposed to attend.

Sam has had four high fevers today, each lasting one to two hours. The infectious disease doctor said it's normal to have fever, but for them to last so long is unusual. She also said his right lung sounds diminished and has ordered a chest x-ray. When she sat with him this evening, she said his breathing was labored and was concerned. She is also testing his blood to see if the defibrillator itself has caused some sort of infection.

At one point today, Sam's hands and feet turned a "dusky" color (basically, blue). I was very upset. He started holding his breath during that time too. They called the cardiologist, who came immediately. At the time, Sam was having a fever spike and had about 102.9F. We were using the cooling blanket, but he was shivering too much and we had to stop. The doctor said it is very typical in normal babies to have those symptoms when there is a fever spike. Also, Sam's heart was doing some very strange things and even got up to 193 beats per minute.

After all the fevers he has had today, even with the very worst one, where his fever was 103.1 at the highest recorded time, he never went into a sustained ventricular tachycardia. That means, his heart never beat so quickly that it couldn't be rectified without a shock.

That's good news. No, that's great news.

This evening my Uncle Jack and Aunt Joyce came by right in the middle of a cardiac event. Sam's heartrate got up to 197bpm. He was terribly upset, as were we, and the nurse stayed in the room the entire time. Once his heart slowed down a little, he actually smiled at Aunt Joyce. It was the sweetest thing. I left her with him and Bill and Uncle Jack took me down to the cafeteria to find some food. It was the first time I had been in the cafeteria or away from Sam's bed since we got here. I even had to go down to the first floor and get a badge, because I didn't get one when we came in via ambulance.

So, more ups and downs. I expect we'll have another night tonight like we did last night. Everyone is still thinking all of this through. The cardiologist, the ID doctor, us.
I feel bad for Bill - he's only on his third week of work and he's already missing days. But, I'm grateful to have him. I need his support.

Thank you for all of your support too. We appreciate reading all the posts and talk about them throughout our darkest times during the day. You are precious to us and we appreciate it.

Also, for those of you who are into homeopathic meds, we are all for them but unable to use them on Sam. With his heart condition, we cannot tell what any normal medicine will do to him, but especially one that has not been tested on this condition - which is all of them. It's frustrating, but that's life. Thanks for the advice, Hollie.

Fever

Sam has sustained a HIGH fever since 2:30am. It is going up. It is now 103.1F.

We have a cooling blanket on him. We're a bit surprised he hasn't had a VTAC yet, but we're not bothering him and not moving him, so his heartrate might not be bothered. In the past, he has had a shock when we have picked him up to take him to the hospital or agitated him in some way. However, he HAS had a shock before while just sleeping.

Please continue praying for his heart. It's obviously working. Please pray for the fever to come down - and whatever is causing it to go away.

Sunday 9:30 PM

It's about 9:30 PM here in Levine Children's Hospital. Sam's temp was taken about half an hour ago and it was 97F. I didn't believe it (this was a rectal temp), so I asked the nurse to do it again. This time she did it under his arm. STILL 97. It sounded strange, so I grabbed the thermometer and stuck it under my arm. I watched her take it out of the box, so I knew it was brand-new. It reached 97.1 on me when I stopped it. I just wanted to make sure it could get above 97.


All that to say, his temp is down. He was very sweaty when she took his temp, so I know his temp was breakng.


So, here we are - up and down, up and down: in emotions, heartbeats and fever. We feel every bit of it.

Bill is heading up to Hickory tomorrow for some meetings. It's only an hour away and I told him I would call him if Sam had any trouble. Samaritan's Purse has been really great about telling him he should stay with us, but we want to make sure he is going to be available at some later time if we should need it. Also, I have some family here in Charlotte and in the outlying areas, so I'm in good hands if I need something.


The cardiologist, who is NOT a rhythm specialist, suggested putting Sam on anti-arrhythmia drugs if this continues. He said it is extremely dangerous and goes against what our rhythm specialist in Raleigh recommended. He said that Sam's body could respond in two ways - positively, thus bringing down his heart rate and keeping things under control, or negatively, causing his heart to go into VTAC and possibly VFIB so badly they would have to paddle him from the outside. It would have to be done in the ICU so they could monitor him closely. This cardiologist suggested this as a last resort, but we are all in agreement that we need to get the rhythm specialist here in Charlotte's opinion before we do anything.


It's difficult to have to make decisions like this, but it's more difficult to have to stand by and just watch him get shocked and watch his heart rate get sloppy and go into VTAC on his heart monitor.

I know we're at a down spot right now and we feel safe, but a bit vulnerable at the same time. Please pray that his temp does not spike during the night, as well as during the afternoon tomorrow, when his temp usually gets to its highest.

Also, the infectious disease doctor said she would like to keep Sam in the hospital for 24 hours PAST his last fever. I asked her if that meant a week or more and she said we would re-evaluate in a week.

Thanks for your prayers.

FEVER

Sam is having a TERRIBLE time with a HIGH fever this afternoon. He struggled with it for about an hour and a half while we watched helplessly his monitor showing his heart having very bad rhythm. Then his defib shocked him.



He now has a cooling blanket under him and we've lowered the temp in the room to 65 degrees F. He has no clothes on, save a diaper.



You guys, we really need your prayers. Our own hearts can't take much more of this. We don't know what to do. The nurses don't know what to do. The doctors are helpless as well.



He probably just has another virus, but it is very common for 18 month-olds to get high fevers. If every single high fever is going to end like this, we're going to have an incredibly long road ahead of us. We have spoken with the infectious disease doctor and she is looking for a few things. She said it's probably just several viruses back-to-back.



Please pray for Sam's fever to go down.



I apologize for not answering the phone. We don't know what to say.

update

We are being moved to intermediary care, since Sam's defibrillator hasn't shocked him again. They are sending an Infectious Disease doctor over to see what could be the cause of such a long-term fever. They said we'll be here at least another 24 hours.

In Charlotte

This is Teesa, finally.

We are in Charlotte at the Levine Children's Hospital (Carolina Medical Center) in the PICU. We were transferred via ambulance late last night from home.

Sam had at least two events with his heart last night where the defib discharge, it is likely that he had even more events than that but his body came out of it on his own. We were admitted straight to ICU and when we got to the room, he got a big shock that actually hurt my arm and body quite a bit. I've never felt a shock before, but I guess I was positioned just right.

They were going to airlift him out, but changed the plan at the last minute. It was better for us, because I was able to ride with him.

Bill followed later in a car. He's currently sprawled out on the couch in Sam's room. Sam's heart is in better shape now than when we arrived. It was skipping beats and doing a few odd things when we got here, but it's steady and constant now.

We don't know what's causing his fever, which got to 103.1 last night. It started creeping up when we got here too, so we've continued to keep him medicated. They put a probe in his rectum to constantly monitor his fever. It's 98.8 right now and has been creeping up from 98 for about an hour.

Please pray hard for his temperature to resolve itself and for them to figure out what is causing the fever.

For those of you who have missed it, Sam's heart cannot take fever. If he has a fever around 102F, his heart will beat too quickly and his defibrillator will need to discharge if it beats too quickly for 60 beats or more.

Blessings. I'll keep you updated now that we have internet.

Teesa called

Teesa called around 9 PM saying they were on the way to the hospital. Sam's fever was 102.9 and the defib had fired. I'm not sure she wanted me to put this on the blog but decided to get the word out.
Please pray for Billy and Teesa also. I can hear the stress and fatigue in their voices. I know they are depending on God and know God will prevail. I believe it weren't for Christ in their lives this would be so much harder on them.
Again, your prayers are so very appreciated.
As you may have guessed, this is Billy's mom again. We'll let you know as soon as we can the update.

Sam Again

Sam has a 101.4, it's been increasing over the last couple of hours. They had him at the pediatrician this afternoon. More blood work and catheter were done. The lab work came back fine. They need to just to keep the fever down. They believe he had a heart episode today but it did not make the defib discharge. Pray for a normal temp.
On another note, there is an issue with the closing on the house which may cause them to lose a good bit of money. They ask for your prayers concerning that.

Sam's Dr. Buck Visit

I spoke with Teesa. She asked that I let you know Sam was shocked two times and had six events. Dr. Buck readjusted the defib raising it to 60 heart beats before it shocks Sam.
They will see his new pediatrician again on Monday and the new cardiologist in Charlotte Thursday, the 17th.
Teesa may be somewhere that she will be able to read emails tonight.
Thanks again for all you prayers.

Update on Sam

Hi, Billy's mom again. Sam came home from the hospital Wednesday morning. He seems to be doing well as of last night and no word since. It is possible that he has a stomach bug. He and his mommy have gone to Greensboro to see Dr. Buck today. I'm sure she or I will be posting what came of this visit. The blessing of this incident is that they are building relationships and a support group here. As always, thank you for your prayers and of course it would be appreciated that they continue. As for me personally, I also would like to thank you everyone. I know your friendships and prayers have meant a great deal to the entire family.

Sam in hospital again

This is Teesa's mother in law helping out. Sam started running a fever Sunday night. He was taken to the hospital last evening for a short time. They went home then at midnight Sam woke up with a 102.5 and the difib fired. By the time they got to the hospital his fever was 103.1. He was diagnosed a small ear infection and possible virus. They may stay until tomorrow afternoon. We have plans to see Sam's cardiologist on Thursday in Greensboro. Sam is feeling very bad. He just sits there so we know he isn't feeling well. They still do not have email or Internet. Bill and Teesa appreciate your continued prayers. As soon as possible or needed Teesa or I will update to keep you informed.

Bill's new car

Intervarsity at NCSU and Meredith

Many of you know that my brother, Adam, works for Intervaristy Christian Fellowship. His work with NC State and Meredith College students is monumental. I have been very proud of what he is helping to do on campus at State, partly because it is my Alma Mater, and mostly because he is training students about living a Christian life by example and by what he teaches.

This video will give you a glimpse of his work on campus. The students there desperately need to know more about how their lives can be changed for the better. They need Hope.

Animals Sounds Video

Check out these awesome animal sounds Sam can make.

Life is Unexpected

Congratulations to Bill's sister and her family on their new son, Santino, delivered today. A whopping 8lbs 5oz. Phew!

I forgot to mention in the last post that Sam is now officially off the Prevacid he was taking. It was for his acid reflux, related to the defib smooshing his stomach and intestines. It is the first time that he's been off it since his surgery almost six months ago.

He's saying so many new things every day. This evening, Bill and I were trying to have a conversation at dinner and Sam, who was finished with his meal but still in his high chair, kept roaring like a lion. Not just any lion, but the loudest lion that ever existed. He definitely has his father's projection!

Something he inherited from me is his temper. On Sunday morning, we went to church and kept him with us in the sanctuary. He got really frustrated halfway through the sermon and threw his crayons down. Then he arched his back, as he does when he's mad, and hit his head on the pew behind him. Well, that made him burning mad, so he arched his back again at a faster rate and banged his head extremely hard, causing him to scream out in pain.

I ran him out to the hallway where he finally calmed down and happily blew kisses at people walking by. After the sermon was over, I brought Sam back in and someone in the front of the sanctuary asked me if he had fallen. Apparently everyone heard the loud bang and the screams and knew it was our little angel. I used to throw very similar temper tantrums when I was young.

Going back to his new sounds, he can do almost any animal sound now. He learned most of them in a two-hour period last Thursday, but adds new ones every day. Today he started saying hello (but it sounds like, "meemow"). I put him on the phone with my mother and he kept saying it over and over. Then he roared. I think he blew her ear drum out.

Great Visit

We had a fantastic doctor's visit today. Sam is still running a low-grade fever, but he's not sick for once. Teething is causing this one. He was so well, in fact, that he even got another vaccination today (Polio).

We have about three more weeks in the Raleigh-area and we are hoping to see the doctor only once more. After that, some other doctor will take over Sam's care. We've really been blessed with great doctors who work well together here. God is good and is the Great Physician. We know He will provide us with great doctors in our next season of life as well.

By the way, Sam is now saying all kinds of new animal sounds. He learned them all in a two-hour period last Thursday. My favorite is the sound a horse makes. He's actually heard a real horse neigh, so it sounds very close. Bill took some video, we'll have to post it later.

OH NO!

Just about half an hour ago, Sam was begging me to use his markers. I strapped him in his high chair and put his coloring book in front of him, along with a few non-toxic markers.

I turned my back for a second. I mean, literally ONE SECOND. It all happened so fast.

If you can enlarge this next photo, check out his fingertips. The pictures don't really give the magnitude of just how much marker ink there was everywhere.

I edited this to add a new video of Sam dancing. We took this video a couple days ago. He's stil ldancing with that Leapfrog console!

Visiting Friends

We haven't really gone anywhere this week, but we sure have had a lot of visitors. Just this morning, Miss Jane Bailey came over to play with us. Sam had fun blowing her lots of kisses and we got to share some pecans with her.

Unfortunately, Sam has another low-grade fever. We saw the doc a couple days ago and she said he's getting another cold. Ugh!

Come on Spring!!!

A couple days ago, Sam, Bill and I met my college roommate and great friend, Jenny, at Umstead Park for a hike. Sam, Jenny and I went on one trail and Bill took another. We got some pizza and came back to our place for dinner. Here is Sam with Jenny. You can actually see his defib and a small part of his "zipper" scar on his belly. Sam sure does love her.

Also, I wanted to post some photos of a Contra Dance Bill went to. Apparently, they have these dances once a month there and it's very family-friendly. Bill's already been to two, but I've never been. They look like fun.

Here's a photo of Matt dancing. I love it!

Twirlin' Sam

This is an older video - about three weeks old. Sam learned how to turn around (a full 360) the same day this was taken. It was also the day after we had been released from the PICU at Wake Med. He constantly amazes me at how much he learns despite his hospitalizations. Technically, I think he is supposed to be developmentally delayed from all the hospitalizations, but, as you can see from this video, his learning curve is high!

Even since this video was taken, his dancing-style has changed. He turns around in a circle, but leaves his hands to his side. We tried to get video of him tonight doing the new dance, but he wanted to play with his blocks instead.

Sam at 5 months old

Remember way back when...







We will write more details about what's going on with us in a couple days. PLUS, you guys will get to see new video very very soon.

the Potter's Hands

Jeremiah 18:1-6
The word that came to Jeremiah from the LORD: "Come, go down to the potter's house, and there I will let you hear my words." So I went down to the potter's house, and there he was working at his wheel. The vessel he was making of clay was spoiled in the potter's hand, and he reworked it into another vessel, as seemed good to him. Then the word of the LORD came to me: Can I not do with you, O house of Israel, just as this potter has done? says the LORD. Just like the clay in the potter's hand, so are you in my hand, O house of Israel.

Our lives are about to start anew here in the States. The Lord has clearly told us to start working with Samaritan's Purse, a wonderful organization that helps children around the world.

We will still need to finalize the details with SP and nothing is set in stone right now. We only have a few more formalities to hammer out.


[God] who began a good work among you will bring it to completion by the day of Jesus Christ. Philippians 1:6

A Little Embarassing...

I'm super-pumped that everyone's enjoying the cookie-discussion! I made some myself last night. Mmmm. I sure am going to miss this Pampered Chef kitchen when we leave, as Shannon has pointed out!

So, I have a little embarassing story to tell. We went to the bank yesterday to sign some papers to get a loan for a car. Bill had already been to the bank and properly applied and I just needed to come back to finish signing. We brought Sam, since, well, he just goes everywhere with us these days. We were sitting opposite the loan officer when Sam started to become discontented with just reading the book I brought. I quickly got out this cute little crayon carry-case that our neighbor and friend, Tara, made as a party favor.

Sam pulled all of the crayons out and instead of drawing on the paper Bill provided, began BEAMING the crayons over at the loan officer's face! He finished throwing three of them and was so proud of himself, before we quickly gathered them up and apologized profusely!

Can you imagine? We're supposed to be straight-laced and professional-looking while we are in process for a loan - how hysterical!!!

She was extremely kind about it.

Ahhh, the things kids do. I love it!

Still waiting

I know a lot of folks are curious about our next move. I will definitely post about it when I know. But, for now, we are waiting to speak with Sam's cardiologist in the morning about the possibility of moving..

If Sam still has a low-grade fever tonight, we will need to see his pediatrician tomorrow afternoon .

Enough about the heavy things - I was thinking about cooking lately. I haven't shared my chocolate chip cookie recipe in my blog before, but a lot of you know I spent about seven years perfecting it. Since cooking is a great passion of mine, I am going to share my passion and lighten up some of your lives. Be careful though, they are addictive.

Happy Valentine's Day!

Chocolate Chip Cookies

Mix in small bowl:
1 1/2 cups flour
1/2 t each salt, baking powder, baking soda (I add a pinch more salt)

In another bowl, use hand mixer to mix:
1 stick butter
1 egg
1/4 cup white sugar
3/4 cup light brown sugar
1 t vanilla

Add the flour mixture to the egg mixture using a hand mixer. Then add 1 cup SEMI SWEET chocolate chips.

Place on a cookie sheet (use an ice cream scoop for consistency) about one and a half inches apart.

Bake at 375F for 12 minutes.

Cool on a cooling rack. Eat with a tall glass of cold milk. Yummy!

Alas, Another Ear Infection

Bill got back late last night from his interview with Samaritan's Purse. It went really well. I'll give you details on it later, as we are still praying through a decision.

Our doctor told us today about a special program with Medicaid that may help pay some of our medical bills once we leave our current employer (whose benefits are incredible). We're currently trying to print up the application and will await a call from them to make sure that we qualify. It sounds like it would be perfect to fill in the holes for what other benefits might leave out. There are many options, thank goodness, since Sam will likely be hospitalized a lot in his little life.

We weren't too surprised to learn today that Sam has another ear infection. His left ear has fluid in it and we're treating it with more antibiotics. Apparently it's a holdover from last week's cold.

He's doing great. He has taken to singing with Bill lately and REALLY missed him while he was away. He's still got a low-grade fever, but we're hoping that will clear up by Thursday. Sam sees his cardiologist on Friday morning - we're hoping for a great visit and to talk about possibly moving to *** and the health care there. It's a bit more rural than here, so we're not so sure...

Note to Shannon: Is JoJo thinking of applying still? I know of a great position available.

Practice Cake

I should have posted this two days ago, on Lauren's ACTUAL birthday, but I didn't get the pictures uploaded until now. Our friend Paul came over and made a practice birthday cake for her, so he could get it just right. It turned out to be delicious! Hope you enjoyed the REAL one, Lauren!

Sam has 100.6 temp this morning. He's acting great and doesn't seem to be feeling bad. I have no idea why he keeps going up and down with these temps. Very frustrating.

Bill is leaving this morning to interview with a company. Please pray with us that he will hear God's voice regarding this position. The health care there isn't as good as here in the Raleigh-area, but our cardiologist doesn't see a problem with us moving there anyway. I'll keep you posted. His interview is on Monday.

Two Days of Being Healthy!!

Sam has gone two days with no fever during the daylight hours. We're thrilled!!

Thanks for your prayers.

He's started making noises like a horse does (saying "neigh") and has learned how to SKIP when walking. He thinks it's the funniest thing ever. He also dances in a new way - by stomping his feet, turning in a circle and rotating his wrists. Maybe we can get video of it and show you. It's adorable!

You're Not Going to Believe This...

I can't believe I am about to write this, but Sam is sick again. He just can't seem to catch a break this winter. I took him to the doctor yesterday, because he spent all of Sunday night coughing and having difficulty breathing, plus he had 100.3F temp. The doc said he has a NEW bug, and this one has settled around his vocal cords, making them very swollen.

Sam has been holding his breath a lot, and the doc thinks this is a functional issue - that Sam is trying to increase the size of his airway because of the swollen parts preventing good airflow. The good news is that if I had waited to go to the doctor, he said Sam would probably have been hospitalized for pneumonia by Thursday this week.

Sam is now on steroids to try and decrease the swelling, increasing breathing functions and generally allow him to sleep better.

He had 100.3 temp just before his nap about an hour ago. Let's pray that he won't be sick for long! He's in good spirits still and hasn't lost too much energy.

Phew, we CANNOT wait for Spring to come!

I forgot to add that I think my toe is broken. I dropped something on it and it's purple and hurts a lot. I'm going to wait to see a doctor, since it could be that it will heal on its own. What a week!

Overdue Photos

Talk about a tuckered-out little guy. He fell asleep pushing the drawings on his Leappad.

It's been a while since we added some photos of Sam. I didn't mention that we had several visits from friends during the month of January. The first of those friends was a guy we used to work with in East Asia, Josh. We took Josh hiking at Umstead Park one day.

I also got to visit with my college roommate, Jenny. She made Sam and I lunch one day and Sam LOVED torturing her cats. She lives in nearby Durham.

Then some old friends came for a visit. It happened to be the same week Sam was admitted to the PICU. Unfortunately, we didn't get any pictures of their visit. It's too bad, because they have three adorable children who happily played with Sam. Sam was gracious enough to give them his virus, and they are finally healing from it.

Sam sure does love being outdoors. This was taken at Umstead during an unseasonably warm day.

I hadn't mentioned it before, but we bought a new-used car. It's a Chrysler Pacifica. It's probably the nicest thing we own. I guess it's the only thing we own of value. I'm sure we'll be grateful for is when we're sleeping in it come April. :)

Obviously I'm just kidding. We know God is going to provide for us and we appreciate everyone who is helping us to locate a new job. Keep praying!

On another note, Sam is still carrying a low-grade fever around. He had 100.3 today. We're relatively sure that it's from the molars that are coming through, but he was certainly acting sickly today.

He started to fall asleep tonight and his whole body jolted. I was pretty sure he hadn't been shocked, but he was silent for a moment and then started screaming at the top of his lungs. I was so worried that he had been shocked by his defibrillator that I had to check it. Turns out he just had one of those moments where you feeling like you're falling just before sleep. I guess it scared him too, as it took a while to get him back to sleep. It's funny that I am always wanting "normal" moments with him, but when one finally came, we both were too upset to enjoy it!

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!