A Good Night

Just got an email from Teesa which was encouraging...

I actually got a lot of sleep last night. Carolina was only up from 2-3am. Not too bad and I went to sleep at about 9:30 or so.

Bill said they had a great night, but very little sleep. What I mean by great is that he had no events, no VTAC, nothing like that. The doc said he wants to see if we can get Sam off the narcotic (Oxycodone). He has been going for longer stretches without it, but then he'll cough or something and it's back to demanding the meds (me demanding, anyway). The next time the med is due, we'll see about giving him Tylenol and if that doesn't cut it, we'll give him the narcotic too. They would prefer for him not to have narcotics to go home with, but it's likely he will anyway. They'll do another chest x-ray tomorrow to see about his lung. The doc said usually that only lasts for 24 hours, although Sam had his for 48...so we just don't know how that will go.

Bill said Sam finally agreed to wear a diaper, but is still telling him every time he has to pee and is going in a little portable urinal. Stubborn kid. Still hasn't pooped, but he's getting colace every couple of hours.

He was very happy after the doctors left this morning and told Bill that they didn't hurt him at all.

Carolina is a happier camper - she's gotten her eye med this morning, a big breakfast and lots of time with mom.

We're going to try and make it to the atrium playroom in just a few minutes. I need to convince this boy to get up and he just wants to lay there. Oh, they took his bandages off this morning. His side looks swollen and terrible, but the JP tube stitch looks good and the front incision is not swollen at all. Still sad though.

She also said Carolina is doing well, and is happy this morning after having a big breakfast and lots of Mommy-time.

Please keep praying for them as they move forward. Let's pray for a really great day.

Thursday Night Wrap-Up

Shannon here again, posting for Teesa.

I talked to Teesa a little over an hour ago, and received some of the tid-bits of the day. It's been a very tiring day for the Klears, but they are persevering. As you know, Sam received a shock last night from his device when he went into VTAC. They discovered today that his heart actually had a few episodes (around 4 if I remember correctly) where the device "paced" him out of it, rather than shocking him. This is good.

Sam also sat up today and took a few slow steps. It's very important that they get him moving, especially in light of the fact that today his lung was more collapsed than before, and also had some fluid.

They are going to give him a diuretic to try to help him urinate, but this sometimes puts electrolytes off-balance, so they're going to have to monitor that because out-of-whack electrolytes can send his heart into VTAC again.

At this point the doctors are still happy with the way things are going, and there is talk of releasing them as early as Saturday. But I know Teesa is in no hurry to leave, and they're all just taking this one day at a time.

In the midst of it all, there is little Carolina. And it sounds like she's being a trooper while most of the attention is on her big brother right now. She is still needing daily attention to her healing eye, but it sounds like she's doing well. Teesa is resting with her at the RMH tonight.

Please continue to keep them all in your prayers. We're praying for a good night and a really good day tomorrow. I know they are thankful beyond words for all your prayers.

8/20 Evening

What a tiring day. I honestly don't feel like getting into the details. Sam needs our prayers. Period.

8/20 11:15am

Thanks to Nina and Shannon for helping post to gather prayers for Sam.

We have seen the doctors today and there is still no known reason for Sam going into VTAC last night. There are several theories though. Any one of the following could cause an arrhythmia in a child:

• He just had surgery.
• He did have a fever, which has proven to give him problems in the past.
• He also had low magnesium, which means his electrolytes were imbalanced - this will always be a cause for concern as he can go into VTAC with an electrolyte imbalance.
• Another possible reason is that his heart was put under duress at the time of the surgery.
• He could have an infection.

The cardiologist was just in listening to Sam's heart and said he has now heard a "normal" murmur. He said it's nothing to worry about, but since his heart is outputting so much more, it's likely that it would come out now (even though we haven't heard anything about it before now).

His defibrillator was set to shock Sam if 24/32 beats were over 260 beats per minute. It was set to shock him a second time if 9/12 beats were that fast. Sam's heart only beat 10 times at over 260bpm last night before he was shocked.

So, we're in a quandary again as to why it shocked him so quickly. One theory is that his heart went into a very fast VTAC but came out of it on its own and then the second one the defibrillator thought it was time to check 9/12 beats. But, that seems unlikely to me.

A Medtronics rep will be in soon to interrogate the device and we will learn more then.

Keep praying for my boy. He's in a bad way.

They have stopped the epidural and started him on oral medication. If this works for pain management, they'll take the epidural and Foley (catheter) out this afternoon. Our hope is that he will be in the playroom playing during their 2-4pm hours. Who knows if he'll be able to tolerate moving or not, but we absolutely need him on his feet. He's been complaining about having to go to the potty, but can't go and is refusing a diaper.

As for us getting out of here? Who knows. I'm in no hurry, because there are no pediatric cardiologists in Boone and I don't want to put him in a bad situation.

6 am August 20

This is Nina Patton from Seymour, Tennessee writing for Teesa. Sam was moved to a step down unit in ICU yesterday because he was doing much better. At about 10:20 pm last night, 8/19, he went into vetac. He is such a brave little guy. Teesa and Sam have had quite a long night because they have been trying to determine what caused the vtac. They are suspecting that there may be infection and the blood work they took last night should give them the answers. They expect to take out the epidural today and take out the catheter, which should help a whole lot. Teesa and Sam got about three hours of sleep and the movie Cars stayed on all night. On the brighter side, Carolina got to come and see Sam yesterday. She and Bill went to the Ronald McDonald house last night and plan to come up around 8 am this morning. My husband, Doug, and myself spent the night in the room so Teesa and Sam would not be alone, which we were glad to do. Please continue to pray!

Please Pray

This is Shannon posting for Teesa.

I just received a phone call and she asked me to post this so everyone can pray.

Sam just received a shock from his device because he went into v-tac, but the cause for it is unknown. They were adjusting his position slightly in the bed just before he was shocked and Teesa noticed his heart monitor was at 284. His fever is very slight, so no one knows right now what would put his heart rate so high.

Obviously, this was very troubling for them. Please pray.

Wednesday Evening Update

Wow, today has been a very difficult day in a lot of ways. But, God has really blessed us in many ways as well. We were very surprised last night by some friends of ours who drove all the way from Sevierville, TN just to care for us. They brought us lunch and did Bill's two week's worth of laundry and have generally loved on us.

My Aunt Nancy also came in from Georgia to care for us today and love on us (plus meet her new great niece). We were already tiring of the cafeteria food and my brother's friends whom we have never met made us dinner.


As for Sam, he has suffered a great deal of pain today, just as they said he would. He slept for a good portion of the day, but when he was awake it was very painful.

However, his ICD (defibrillator) has been turned back on because there was no evidence of double-counting, as he had last time. He was moved down to the CICC (pronounced kick) unit about halfway through the day as well. When he awoke after being moved, he was in severe pain. His legs were kicking and jolting out like he was having a convulsion, but it was just from the pain. The surgeon happened to be here at that very moment and a lot of activity occured at one time. In the end, the "pain management team" decided to add a pain medication to his regimen as well as upping his epidural slightly.

Taken about two seconds after the one above

Right now he's watching a brand new "Bob the Builder" DVD (thanks, Ann!), wearing his brand new homemade Thomas PJs (thanks Jean!) and humming along with the theme song. His pain level varies, but it seems they have finally made him comfortable. Hopefully he'll go to sleep eventually (he HAS been asleep for almost two days, so I imagine he's a bit off-schedule) and will be comfortable.

His lung seems to have improved a bit overnight, but when they turn off the epidural in the morning, he'll have his work cut out for him.

Wednesday Morning

Sam had a decent night. He has started to wake up more frequently since about 6am this morning, but was still falling asleep within about a minute.

However, he's been awake for about 20 minutes now and has requested a little TV. Of course, nothing suits what he wants to watch, but there's no DVD player in here so he can't watch his ol' standbys.

A very small part of his lung is collapsed, so it seems that he got a lot of big breaths in overnight. He also had a couple sips of water (laced with orange juice) this morning. Once he drinks more, they'll get him on some food and then when he has eaten some they'll likely move him to the CICU (cardiac intensive care unit). He also asked to sit up this morning, so (without moving him), we adjusted his bed to a sitting-up position. He's in a tiny little ball now and still hasn't wanted to move. He will need to get moving today in order to help his lung - so they may have to turn down some portion of his epidural in order to meet that goal.

I haven't heard anything from Bill and Carolina. I assume they'll be here mid-morning.

Final Evening Post

I am now at Sam's bedside with Bill's laptop. Bill has gone back to the RMH with Carolina and will attempt a night with her on his own. I'm not really sure how he and his jet-lagged body will get her there and do everything they need to do, but I'm sure it'll get done.

Pray for a smooth evening with her. I can only imagine what he's about to experience.

Here's what I know that I didn't share with you earlier. I'd written previously that Sam's number on his old lead was at a dangerous 2.3 and as low as 1.8, but when we last interrogated the device two weeks ago, it was a 4. Dr. Buck felt that it needed to be a 5 in order not to do surgery, so he wanted to go ahead with it anyway.

It took his surgeon many tries today of sewing the new lead on and getting low numbers before he finally found a sweet spot. He said the key was in getting two leads a little farther apart from each other than normal. He landed on a spot that was in the low 20's when they sewed Sam up. That's what it's supposed to be! Praise God.

His surgeon said we know a few new things about his heart. First, it's strong, very strong - and definitely stronger than two years ago. They tried to put his heart into VTAC to test the device three times. The first time it wouldn't even get into VTAC. The second time it was very short and the third time it was also very short - his heart came out of VTAC on its own. That's great news. They didn't want to push the issue, so they decided not to check if it works, because we already know it does work and that the shocking lead is perfectly fine (they replaced the R-wave lead today).

The second thing we learned today is that his heart is still very messed up. All the electricity flowing through it is very unpredictable. Finding the "sweet spot" was much more difficult than it would be on any other person.

The surgery took about four and a half hours.

He is going to be in the PICU until they take out his epidural. They may leave that in another day (so 2 days total). If his STATS start dropping (like the oxygen level) they may back off the epidural some overnight, especially since he's still so sedated.

The collapsed lung may prove to be a problem tomorrow. If they can't get it to re-inflate (through crying or blowing bubbles), they will have to beat his chest. Remember though, his chest has a very long incision in it that isn't being covered by pain meds. So, that could prove to be very painful.

He is in a considerable amount of pain whenever he moves right now. We've had to move him up on his bed a little bit to help with his position and it was extremely uncomfortable for him.

Please pray for his pain management overnight.

Pray for rest for our family.

Collapsed Lung

Sam has a partially collapsed lung, which is what is causing his labored breathing. All this really means is that he is going to have to work extra hard tomorrow at blowing bubbles and taking deep breaths to try and recover his full lung.

He woke up a few minutes ago when I was with him. He immediately said he needed a hug and didn't want to let go for a long while. Then he said he wanted to listen to some Thomas music. Fortunately, there's a CD player in his room and he's happily resting listening to it now. Bill is with him.

He also said that his belly hurt very badly. He was actually awake and communicating (although very groggy) for about 10 minutes before falling back to sleep. We've had a few visitors today and my SIL is bringing Chick-Fil-A for dinner. Thanks to Jenny, we had lunch provided too.

Keep praying for him, please.

Saw Him

I got a chance to be with Sam in the PICU. It was very sad, especially with all the tubes. He woke up and cried and seemed to be in a bit of pain with his belly incision.

His breathing is a bit labored too, but they will be doing a chest x-ray soon and that will tell if he has a collapsed lung or any congestion. However, it is normal to have labored breathing with some of the stress he's been under.

God is in control yesterday, today and tomorrow. He will carry us through this.

Thank you for praying. I will keep updating as I can. I'm about to go back in with him and then we'll eat lunch. Since he is mostly unconcious, today is a good day to spend time with Carolina, especially since she cannot go into the PICU.

Breathing Tube Out

Sam has woken up enough to pull his own breathing tube out. Apparently it really irritated him.

The doctor had to make his incision a little longer in front than he initially thought - so it's lower than the old one used to be. They had to pull the whole defibrillator out in order to rewire it as well and it was tight getting it out and tight getting it back in.

He'll be in the PICU at least 24 hours.

Surgery Done

Sam has just been sewn up. The anesthesiologist has come to see us and said they actually made a second incision in Sam's belly in order to actually plug in the new lead. We didn't realize they were going to do two incisions initially. She said the epidural may not block the pain in the belly, but they will be working with him and checking on him all day.

One of my best friends works here in the hospital and she just called to say she actually saw him in the hall and he was being rolled to the PICU and he looked good. I heard from the anesthesiologist that he was a bit grumpy, but otherwise okay.

Update on Surgery

Sam's nurse just came in to give us an update.

They have placed a new lead on Sam's heart successfully. The doctors said it went "superbly" and they are very pleased. He is being sewn up as I write this. He will have at least five days of recovery in the hospital (he'll likely be in the PICU tonight).

UPDATE: They just made the incision. The epidural looks great. Everything is good right now.

We're in the PICU waiting room. Sam is waiting for his surgery now. They did an interrogation of the device and the numbers were down to the mid-2s.

He'll have an epidural for pain, but there is a chance that won't work.
I kept hearing the word "painful" over and over again. We'll see how his recovery will be.
Carmen, the family specialist, went back with him into the OR. He was acting drunk. They asked him where his underwear was and he burst out laughing (apparently) and everyone got a kick out of it.
Dr. Buck said they will leave the device off for 24 hours at least.
They are going to leave the old lead on his heart.
They are going to add this new lead to the back of his left ventrical, which is the stronger part of the heart. They are really hoping for a stronger signal.
It could take two and a half to four and half or more hours.
They ARE going to test the device by sending his heart into VTAC, but if they can't get a sustained VTAC they are not going to wear him out. Still, Dr. Buck said he wants to make sure it works properly. Last time it took 8 times before his heart was in sustained VTAC for the testing - Dr. Buck indicated they wouldn't wear him out like that this time.
Our pastor Harold drove in from Boone last night. He is with us.
Bill's mother is with us too (from Columbia, SC)
My brother is spending the day with us too.

Pray for his surgeon Dr. Stewart.

Sam's Surgery

This is Shannon posting for Teesa while they're out of town for Sam's surgery. I will post updates and pics as she sends them to me.

I talked to Teesa this afternoon, and was happy to hear a few bits of good news. First, Bill made it home in the wee morning hours today, after a delayed flight. You can imagine he is pretty exhausted.

Second, the Klears were able to secure a room at the Ronald McDonald House. Answered prayer! Teesa said it's very nice there, with a playroom, and free laundry facilities, and some meals provided throughout the week by Dominoes Pizza, and McDonald's, of course.

You probably remember the reason for Sam's surgery is to fix / replace a lead on the device attached to Sam's heart. When they checked the numbers on his device recently, it was a 4, which was up, but not high enough (needed to be above 5). With everyone entering cold and flu season in a few months, Sam's device needs to be reading properly in order to ensure that if he encounters a problem his device will pick it up and correct it.

His surgery is scheduled for 7:30 am tomorrow (August 18th). Please pray:

- for Sam to be brave and at peace

- for Bill and Teesa also to have Divine peace

- for the surgeon, Dr. Buck as he performs the procedure

- for Carolina during this time of transition

- for quick healing / recovery

- for the entire family to have some rest

Sam had an appointment this morning that went very well. Robin, his nurse practitioner brought him a mask like the gas mask he'll be wearing in the morning, plus a heart monitor, a shower cap & surgeon's mask - and a sock monkey. Sam pretended to be a surgeon. What a trooper. God has certainly given him a grace and peace.

Tomorrow, Robin will go back and forth between surgery and the PICU waiting room, where she will keep Bill and Teesa up-to-date on the progress.

Thank you all so much for your prayers - please spread the word!

Emergency Room...Again

We spent the better part of our day at the emergency room again. This time it was for Carolina. I'm afraid to say she tried to poke her out and was, thankfully, unsuccessful.

She happened to be running with a hard-nippled sippy cup when she fell eye-first into said nipple. My friend Casey kept a cool head and called 911 while I was freaking out about how much blood was pouring out of her eye, like tears. After I finally got my wits about me, we all moved towards my car where Casey drove us to the ER.

Thankfully, she only has a very bad abrasion on her conjunctivas. All I really understand is that her vision shouldn't be impaired. Unfortunately, I now have to administer ointment to said eye every four hours around the clock for 7 days. Gah! As if nights weren't bad enough!

Our church really rallied around us. I could not believe the showing. We even had PB&J sandwiches brought to us. Sam was thoroughly entertained. Casey was amazing.

Here's my poor little girl...believe it or not, it looks better here. Although I expect it to be much worse tomorrow. And, if you'll look closely, you can see the circular mark on her nose and forehead from the edge of that cup! That nipple is about half an inch long, so it must have penetrated pretty deeply.

Suddenly Showing

Carolina seems to be feeling better today than yesterday. She was a bit lethargic and clingy yesterday and today she's just clingy. It's a great thing that I love to wear my babies. We went to Wal Mart and I threw her in the Baby Bjorn and we had a blast. She loves to be close to me that way, although when she and Sam are facing each other like that (he's in the cart), they do tend to poke at each other increasingly more throughout our trips.

Afterwards, I was able to go over to Suddenly Showing and buy my very first Ergo Baby carrier! I've been wanting one since before Sam was born, but they only sold Baby Bjorns at that time in Hong Kong. I LOVE my Bjorn though, and so does Bill. We have worn that thing everywhere and it's still in great condition. Both kiddos have used it now and it was well worth what we spent. Someone from our church gave me enough money to buy one...so I wasn't going to pass up this opportunity.

I'm most excited about the Ergo Baby because I can now wear Carolina on my back, side or front, whereas with the Bjorn, I can only wear her on my front. I think this is going to help immensely with my cooking issues. As soon as I start boiling water or washing dishes, Carolina is at my feet screaming to be held. Obviously this isn't safe for her and so I have stopped cooking for the time being. It absolutely KILLS me to not cook or bake, but it's what is necessary right now.

I'm also hoping the Ergo Baby will help at the hospital, especially while Carolina is with us through nap time. She always sleeps really well when she's up against us or in her pack-n-play, but doesn't sleep as soundly in a stroller. In fact, I can't think of time that she has actually slept in a stroller at all. We do love to wear our babies.

So, if you're in Boone and you want an Ergo Baby, Suddenly Showing is definitely the place for you. Looks like she's having a sale on them this week too.

We have ONE more doctor's appointment tomorrow before we leave on Saturday. I'll post again then.

Two Days Until We Leave

We're heading out for Durham in just two days. I've already started gathering items to pack and we're going out this morning to get the last of our grocery items.

After talking about it some with several people, Bill and I think it would be best for us to stay at the Ronald McDonald House in Chapel Hill, if they have room for us. We've debated over this a lot, because we have a free room and generous blessings waiting for us at my brother's house, but it'll be about a 40 minute drive plus we'll have to pay for parking at UNC. We kept trying to think through what would happen to Carolina and how we would split up our time.

Please pray with us that a room will open up on Monday. That way we can get Carolina settled immediately and there won't be too much diversity in her life. We're going to try to keep her schedule to the same one we have here - as much as is possible. I'm sure that will help.

Sam awoke this morning and said he can't wait for his surgery next week. He said he's so happy about going to Chapel Hill. I've tried to be realistic in telling him what to expect, but I can't bring myself to tell him how much it's going to hurt. Instead, I've been pumping up the fact that his favorite doctors will be with him and how he gets to wear homemade Thomas PJs that our friend and neighbor has made, plus he will get to have a Thomas pillow too. I've bought several trains and lots of stickers and I'm trying my hardest to make this transition easy. I know this is going to be hard though. Keep praying for him.

Carolina's New Bug

It wouldn't be a real countdown to surgery unless someone in our family got a big illness. Carolina is the winner this time. Based on her bloodwork, she either has mononucleosis or adenovirus. Her tonsils are so swollen, they look like small golf balls. Today she's finally acting sick by laying around and whining a lot.

So, since you're already praying for us, please pray that Sam doesn't get this. Since Carolina doesn't have a fever and hasn't had a fever, she's most likely NOT contagious. Not until she gets a fever (and the few hours beforehand) will she be contagious. The doctor seems to think she won't get one since she's likely been sick for a couple days already.

Still, I know her throat hurts and it's obvious my baby doesn't feel well.

Keep us all in your prayers!

Regarding Sam's surgery: it is scheduled for 7:30am on Tuesday, August 18th. That's next Tuesday. We'll be at UNC Hospitals in Chapel Hill. He'll be in the CICU (Cardiac Intensive Care Unit) afterwards, until we're released.