Reminiscing

I got behind on making little video montages so here a brief rundown of our boy from one to two years old. It's less than four minutes long.

Make an on-line slide show at www.OneTrueMedia.com

Dr. Bove has decided

that he wants the cardiac cath and EP study done there at U of M. On Monday, 8/24, Connie will have a super busy day. He's set to have his pre-op work-up, cardiac cath and EP Study all done in one fell swoop! I sure hope they have sped up the pre-op work-up process since last time it took 8 hours! If it takes that long this time, they'll never have time for the rest. Kim at Dr. Bove's office called this morning and said that the EP Study is what should take the longest. So, we'll need to be up there no later than Sunday night and then after his big day on Monday, he'll have two days off before Surgery Day. She didn't say whether or not he'll be admitted Monday night. It may depend on how late he comes back from the cath lab. With having all that testing early, he may not even get in there until the afternoon and who knows how long it will take them. They may just keep him there overnight for observation and then let us go early Tuesday morning.
Our happy boy is feeling better!

Connie wearing Sissy's sunglasses

Connie showing his big Cousin Nick a thing or two on the iPod at Anna's birthday party last weekend

Actually. . .

they may not be doing any ablation in the cath lab. It is likely going to be more of a diagnostic cath. They may do an EP study, but it is probable that the ablation will be surgical, meaning Dr. Bove would do it while he's working on the valves.

Schedule update

U of M should be calling in the next day or two to give us the date for the catheter ablation. Dr. Bromberg just emailed and said that it will be done in Michigan, probably 1 or 2 days before surgery, which would push up the pre-op stuff to the day before the cath. Looks like we'll be heading to Ann Arbor the weekend of 8/22-8/23.

This is still so unreal. I'm sure it will sink in the closer we get. Right now we're just on a pink cloud that we have hope for a surgical repair and can avoid any more talk about transplanting!

Got the Date

Michigan just called a little bit ago and said that Dr. Bove is offering us surgery on 8/27/09 for aortic and mitral valve repair with a pre-op day on 8/26/09. We're still waiting to hear where or when anything will be done with the atrial flutter, either in the cath lab or during surgery.

We are thrilled that our little man has a chance at a repair of his own heart rather than transplantation! Again, thank you prayer warriors for lifting Connie up. Now we just need to focus our prayers on staying healthy until the surgery date and that God will guide the medical team that cares for him before surgery and during recovery.

We'll update more when we have more info.

Now that's more like it!

I received an email from Dr. Bromberg saying,
"Received a note from Dr. Bove Friday evening. He was on vacation. Hadn't seen the echo yet, but sounded inclined toward valve surgery. Hopefully will have a definitive recommendation early in the week."

Just thought I'd brighten your day since mine's a little brighter today!!

Ella Update

Ella, the little girl who's DS was postponed a couple of weeks ago, did indeed have her surgery today with Dr. Bove. Just got an update from her mom that she is out of surgery and did great. Dr. Bove described her as "echo perfect" when referring to her heart function. Please pray that her recovery goes as smoothly as her surgery.

All is well in ConnieLand. We're having a better day too. Talking with our pastor helped a lot and we also found out that this weekend at all masses they are doing "Anointing of the Sick". We will most certainly have Connie participate in this sacrament. What perfect timing!

Dr. Bove's office has received the info from Dr. Bromberg. I called this afternoon to confirm and Kim, his secretary, said that she was uploading the CD into their computer system as we spoke and was faxing Dr. Bove the accompanying note. She said he had been out of the office for a week and has a mile-high pile on his desk. Hopefully Connie's report falls on the top of the pile and will be looked at and addressed first. The next step is Dr. Bove will contact Dr. Bromberg. He may surprise us and call us too, but we're not holding our breath. Dr. Bromberg said to give him until the middle of next week to hear something, so it will be an exercise in patience for us for sure.

Not liking the quiet moments much these days

She hustled the whole hour! Way to go Mookie!

Brother came along to see what all the fuss was about.

Ready for first practice. Been counting the days.

Thanks for checking in. Connie had a very good, maybe even great day. He played, jumped, talked and ate more than he has in days. We praise God for hearing all of our prayers and for giving him some peace and allowing the meds to help his heart function under less stress. We spent the day having speech therapy, exchanging Mookie's soccer shoes and going out to lunch. We had too much fun trying to nap (me, Mook and Connie) that we never slept but we rested some. Then after a quick snack it was off to Mary Kathleen's first soccer practice ever! Connie tagged along too. He didn't eat dinner but had a bedtime snack. His eyes look a great deal better today so it's good that we were able to take a bit of a break from the Lasix for a day.

While Connie has improved, we have kind of gotten stuck in a rut. Greg and I look across the room at each other several times a day and both just start welling up with tears. For me, I'm finding as long as I'm busy taking care of the kids or updating people via phone or computer, I'm "okay". Once it gets quiet and there's no one left to share with, that's when it starts getting hard. That's when my mind goes numb and I feel almost paralyzed. Little things like watering the flowers or even exchanging those shoes today feels like such a chore. Like, "who cares about any of this stuff? My child may have to get a transplant. None of this other stuff matters." But it does matter. There is still life to be lived and we're going to miss it if we don't pull up our boot straps and face this. Like my friend Sarah, who I met in Michigan when we were there in 07 said, "There's still snack day at preschool." By this she meant that even though we may be in this situation, dealing with life and death, our other kids still have their lives and important things to them and we still have commitments that have to be met. It's just so hard. We're meeting with our pastor tomorrow morning to try and get a better understanding of suffering and just to pray with him and have him bless and pray over Conway. We pray that this helps us get some peace. It just feels like we've been blindsided. The whole reason for having a double switch was so that the word transplant would never have to enter our vocabulary and now it has, and so soon. Makes me question why we put Connie through all that suffering from 8/07-5/08 just to end up needing one (transplant) about the same time he would have probably needed one had he never been switched. Sorry to be such a downer tonight. It was just a pretty hard day all around.

Also, don't forget about dear Ella tomorrow morning as she undergoes her double switch.

Details on Heart Transplants FYI

Over the last couple of years, we have been asked several times, "Why don't they just give him a heart transplant?" There is a lot of logic to that question because it makes sense to get a healthy, perfectly formed heart in exchange for a diseased, overworked, misshapen heart. Heart parents learn quickly that heart transplant is a "last resort" and the "least desired" route. The reasons center around inevitable rejection and lifelong invasive procedures to check for rejection. Often times, the anti-rejection meds actually cause cancer so then the child is faced with chemo treatments. Here is a little info from another children's hospital that gives answers to FAQ's about pediatric heart transplantation. The number I have seen a lot concerning life expectancy of a transplanted heart is in the neighborhood of 10 years. Even if a healthy heart did last him into adulthood, he would need retransplantation at some point because transplanted hearts develop coronary artery disease. Often patients have to have monthly biopsies of the heart done via cath to check rejection level and adjust meds. Let's just say that that choice is certainly not "the easy fix" or the one that provides for the best quality of life. Don't get me wrong, heart transplant far exceeds death, but if we can, we'd like him to keep his own heart as long as possible! Just for the record.

Conference Results

Well, we heard what St. Louis' opinion is for treating Connie's leaky valves. Are you sitting down? You better, because what I'm about to type will make you drop. Their answer is heart transplantation!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

That's right. They, specifically Dr. Canter who is the head of the transplant team, feel like re-operation would be a disaster which would then make transplanting him after the operation a bad situation. They want to cath him and get him listed as soon as possible. Dr. Bromberg gave more details about how the conference went and let's just say, we're taking it as a sign from God that we should just stick with the folks up in Michigan. Now, if they come back saying the same thing, then we'd just stay here and wait to be transplanted locally, but we (and Dr. Bromberg) are hoping the SLCH guys are wrong on this case.

We're a little taken aback by this news and Greg especially is struggling with it. Please lift our little family up in prayer, that God will give us peace in the words he has told us in the past. He has spoken to us through his angels. He told us Connie would be healed. He told us he would live a long and happy life. We believe Him and we trust in those words with all our hearts. Also, please pray that the Michigan team will be guided by God's hand and given extra wisdom when they decide what their plan would be for our boy.

ETA: Dr. Bromberg also gave us some med changes and we are decreasing the Lasix to .8, down from 1.3 and skipping Thursday's dose. We're also dropping the Amiodarone to 9.5 from 10 ml's (of the super concentrated stuff--starting 7/31 we have to throw that out and use the less concentrated and we'll give him 19 ml's of that).

The Helper Meds are Helping

My guess is that the Lasix is doing it's job of relieving some heart failure symptoms as Connie seemed much more comfortable and content today. He also had some verrryy wet diapers. I guess I hadn't realized how little he'd been peeing. I think getting rid of some of that fluid helped, although now his eyes are sinking in a little he's so dry:(

Rundown of today: He took his new thyroid med like a champ. Crushed and mixed with blue powerade. Then he had to wait 1/2 hour to eat breakfast or take other meds according to the directions. This made him mad! He was sitting in his chair, watching Max and Ruby, and complaining. I think that's a great thing he wanted to eat. Yay! The Lasix bottle says to eat a banana everyday (you lose potassium while taking it which is dangerous when you are also taking amiodarone) and he had been eating bananas daily until, you guessed it, we want him to. So, no luck with the banana today. I did get him to drink about 3 or 4 oz. of powerade though, so that probably gave him some good electrolytes. I'll tell myself it did, anyway. He did want some toast so he ate 3/4 of a piece. That was pretty good, along with some "nog nog". He played with some toys a little while Mom and I tried cleaning up the playroom area downstairs. He did a little whining, but nothing like the last few days. He still prefers me to all others, but did go to Grandma for some cuddling so I could get some work done and give her a break. At lunch he only ate a few bites of biscuit and one bite of scrambled egg. He didn't get much nap. He acted tired and agreed to lay down twice, but both times got up and said he was "done". I put him on the chair while we were straightening up and looked over five minutes later and he was out. He probably got 20 minutes, I'm guessing. He had a lot of goldfish crackers and cheerios for a snack and had a bite of chicken and a bowl of mandarin oranges at dinner. He keeps asking to "eat" but won't tell us what he wants. I know when I don't feel well, nothing really sounds good either. So we are left to go through all of the options and listen as he refuses until we finally say one that he agrees to. It seems ridiculous to me, but I guess it's what we'll do for the next few weeks. It just goes against every parenting bone in my body to do it that way! He got mottled legs again at dinnertime. They went away after his super warm bath. I put him in winter, footed pj's in hopes of keeping him a bit warmer. He's not a fan of socks or covers at night so I guess that's the next best thing.

The biggest differences I noted in him today were his expressions and his vocalizations. While he wasn't up running and kicking, he tried talking along with the shows he watched on the ipod. He didn't sit there with that furrowed brow like he does when he's uncomfortable. He laughed. He wanted to be tickled. He initiated games and interactions. He got silly. He showed joy.

A Few Changes. . .

Colleen from Dr. Bromberg's office just called and gave us a few changes. We are going to decrease his Coumadin dose to 1/2 mg. daily instead of alternating days of 1mg and 1/2 mg. This is due to potential interactions with the new thyroid drug.

He also ordered labwork for this Saturday so we made an appt. with Quest for 8am. He wants a digoxin level drawn in addition to the INR level so we need to hold his dig that morning until after the draw.

I was glad she called because I had a couple of questions anyway and I got to ask them without having to call them myself looking like the paranoid mother!! Last evening, Connie's legs got very mottled looking. This is like a purplish-reddish blotchiness all over. It's not a good thing. It went away this morning though so we're attributing it to him being cold (he did go swimming a little with his sister--he missed the water!). Also, his ears and feet have been freezing. She said that those outer most parts of the body are going to be colder, especially on him. Yesterday afternoon he got tired walking from our car in the driveway to the front door and asked for help to get up the one step onto the porch. He also is asking for help to eat. Either he doesn't have the energy to pick up utensils or he is a completely spoiled rotten stinker pot! Maybe it's both. It is a change, though. He's usually pretty independent. I also noticed him having some trouble climbing up into his stagecoach bed. Our lingering thing is knowing what we should be watching for to determine if there is a need for IV heart meds and more serious interventions. I'm scared of his heart working so hard for the next few weeks that he'll not be strong enough for the surgery. Colleen said she'll run all this by the doctor too, but the main things for us to be watching for are just extreme lethargy and increased work of breathing. In little ones, they also look for feeding changes, but we already have those with him and with a toddler, it can just be pickyness too. He had a good night of peaceful sleep, only waking up twice briefly. Greg made the executive decision that he's sleeping with us from now until surgery. Lately, he ends up in our bed most nights anyway, but he starts out in his bed. I told him I was afraid to start the habit of starting him out in our bed, fearing he'd expect that after surgery. But, we decided that we'll deal with that later if we have to. Right now we want to soak up every possible minute we can with him. And it is fun waking up and snuggling together!

Relieved

I never thought I would say that I was relieved that my little boy has to undergo open heart surgery, but after today's appointment, there is a certain sense of relief knowing that the problems are identified and are going to be addressed. The sooner we address them, the sooner Connie can, as Dr. Bromberg put it today, "get back to the business of being a little boy."

Today's echo showed the valves are leaking badly and Dr. Bromberg feels the biggest culprit and the one that has changed the most is the mitral valve. He also feels like this valve has a great chance of being repaired and still hopes we can avoid the need for an artificial, mechanical valve. The ejection fraction, which was 55% in May, was 32% today. This is a number that shows how well the blood is pumping out of the left ventricle, the main pumping chamber. While 32% is not good, it is also a little subjective since he has been switched. So, it also isn't devastating or anything. Just another number to follow for now.

The next step is to put today's echo and clinic notes on CD to be sent to Michigan for Dr. Bove's and Dr. Dick's surgical opinion. We hope that they will have the opportunity to review the info by this Friday. On Wednesday of this week, Dr. Bromberg will present Connie's case to the team at St. Louis Children's as well and hear their opinion, especially what the EP, Dr. VanHare has to say about his approach to getting rid of the atrial flutter. Given how busy the program is in Michigan, Dr. Bromberg said it would probably be two weeks before Connie could get on Dr. Bove's surgery schedule. He may get preference since he's an existing patient, but it looks as though the likely time frame for valve repair/replacement is middle to end of August.

To help out in the meantime, Connie has been prescribed Lasix (a diuretic) to relieve some of the symptoms and another drug to even out that thyroid number that was off last week.

I'm sure I'll post more details about today's visit later. I'm just not feeling too wordy right now (I know this is a surprise to my friend Michael M.!).

A New Definition of "Good"

Yesterday (Saturday) was a good day for Connie. He ate a little and played a little. He seemed good enough to go to my cousins wedding reception so we did. While there, he laid on my lap or slept in the stroller the whole time except for a brief look at the fish with grandpa. No throwing up and no misery and acting uncomfortable for the most part so I told Greg as we were leaving the reception that I thought Connie had a good day. Then I saw a dad leaving the zoo with his two year old son on his shoulders. He stopped and lowered the boy to the ground where the boy promptly took off running. Seeing this made me pause and think, "No, now that would be a good day. Connie should be running and active and playing like a normal two year old." I got kind of down after that. He had a restless night again and was so tired today. He hardly napped at all though. This morning at mass, the homily was about God giving us enough. How we pray for our daily bread and we get it. It may not be what we'd like or think we need, but it is enough. That brought me back to yesterday. I want Connie to be like that other two year old. I think I need him to be "normal". In reality, it needs to be enough that he's able to walk, able to play a little, able to eat a little. It is enough, I just need to accept that it is. This is our new "good day".

Today was not so good. Today he barely touched his food and whined all afternoon. I kind of lost it for a minute when I saw him try to carry his little learning laptop over to grandpa and he couldn't pick it up and carry it. He used to be able to carry it. It's not heavy. It's a child's toy. He wasn't happy unless I was holding him, and even then he was restless. He did finally have some goldfish and a yogurt drink around 4pm. He refused dinner and after a nice long bath and being a little perkier for awhile he nestled into bed easily at 8pm sharp. Five minutes later we heard a blood curdling scream and ran in to find him sitting in vomit. I guess he never digested his goldfish :( He got another bath and is now laying on Daddy's chest watching a movie. Hopefully he falls asleep soon because he has a big day tomorrow-and it starts early! I'm apprehensive and scared and all those things, but most of all, I don't want it to be like this any more. I so want this suffering over for him. Even if it gets worse before it gets better, it's got to get better than this.

False Alarms. . .kind of

I was just about to post an update from the ER waiting room when Dr. Bromberg walked in for us, and I already typed all the events, etc. out once on a heart forum we belong to so you'll have to bear with me tonight. It is late and I am spent emotionally so I am just going to cut and paste.

We've had a roller coaster week. Wednesday night after the cardioversion, he did great and then woke up at midnight completely panicky. All day Thursday he was fussy, clingy, whiny and miserable. We called and went in for an interrogation. Better be safe than sorry, right. No flutter. Went home. By 4:00 he was a mess, sweaty, uncomfortable, no energy or appetite. Decided we'd call this AM if he had a rough night. He had a great night! Slept 11 hours. Woke up cheerful. Played, aggravated big sister. Seemed better. Then took morning nap (unusual). I had an eyebrow raised and had that behavior under a microscope but then he ate a plate and a half of scrambled eggs so I thought he was fine. Played all afternoon but again by dinner acted completely miserable and just like the day before, getting clammy and so on. He ate nothing at dinner but did have some chocolate milk. Two hours later bigtime vomiting. Called exchange and Dr. Goel (on call) called Dr. Bromberg right away. Dr. Bromberg called us back and said to meet him at St. John's and we'd go into the office in interrogate again. I feel like an idiot and like I'm wasting their time, but he reassured me that at this point, it is necessary and warranted. He thought the same thing when Dr. Goel told him Connie was vomiting-that he was in flutter again.

Connie is not in atrial flutter again, but is having symptoms of heart failure. We are home now but go back in Monday for the full work up; x-ray, echo, the works. Dr. Bromberg is now leaning toward the thought that it is not the flutter causing the CHF, rather there may be some worsening of the valve issues and it may be time to do something surgically about that. Since he is symptomatically as bad as he was in May with fussiness, sleepiness, vomiting and BNP over 7000, even with being out of flutter since 6/17 and only having three days in and out of it earlier this week, it is pointing more toward another cause. So now we wait and see. He said as we parted in the parking lot, "It's not going to be like this forever. We will get past this." I just keep trying to say that over an over to myself.

We appreciate your continued prayers and support. . .we'll update after we learn the results of Monday's examination and tests. I did ask Dr. Bromberg what happens if his echo looks the same as the last one, same as the one from November when he was clinically in very good shape, yet he continues to be symptomatic. He said that the echo is a tool, but it is not the only indicator and we won't let this go on much longer, meaning we'd have to do something. We just don't yet have a plan for what that "something" is.

Bedtime Update/Dosing Change

We got right back into our routine of Connie going to sleep on his own. He did great for his nap and bedtime tonight. That's a huge relief. Can't stand the tears knowing he might not feel 100%.

Dr. Bromberg emailed me this evening to make one dosing change on the amio. For the next five days, he's going to get twice his current dose, to try to get it in his system more quickly (trying to ward off a relapse). After that, we'll go to the 20cc's, up from the current 12.9cc's. Also, he said that one thyroid test from today was out of the normal range and the other one was still pending at the lab. He's going to talk to an endocrinologist and possibly start supplementing him with a thyroid medication. Ugh. Also, I had reminded him this morning that he had said he wanted to follow the BNP level in Connie so as long as he was getting labs, he said to go ahead and add that to the list. That level is the one that detects/rates the amount of heart failure. Remember back in May when he had it done and "normal" is less than 100, severe heart failure is 900 and his May level was 7000! Today's level was over 7000 again. Unfortunate, and definitely a bit concerning, but he doesn't really know what to think of that number because we knew he was in flutter with impending clinical signs of failure anyway. Research that says what the numbers mean are done on adults anyway, not kids with CHD. Still, we have a record of it and can follow it. I think last month when he was in Children's the number was only around 800 and he was clinically doing worse. He was vomiting then and his liver was bigger. So, see? Who really knows what to make of it?!

We're calling on Friday to find out more about the thyroid thing.

Thanks again for praying. God is an awesome God and we continue to trust that He knows best.

All Done

Connie kept telling them he was "all done" while they were trying to get everything set up. Well, now he actually is all done. He is getting a 12-lead EKG while we speak and once he wakes up from sedation, we'll get a little something to drink and be on our way home. He was cardioverted in only one attempt. The plan is to up his dose to 20mls of amiodarone.

We had the "where do we go from here" talk and basically there are several scenarios that might play out. If he has another breakthrough, the potential is there for catheter ablation attempt and even surgery. Dr. Bromberg is going to plan as if that will happen and he's going to start consulting with Dr. VanHare and Dr. Balzer at Children's and Dr.s Bove and Dick at U of M. I'm glad he's planning ahead and getting everyone to put their minds to work about it, but I sure don't like hearing that we might be looking at O.R. time again. The problem with ablation is it would be very difficult with his anatomy. While it is risky, etc. Dr. Bromberg said, "We can't keep doing this." (cardioversion) There's a lot more to what he said and he did a very good job of explaining the pros and cons of each potential outcome, but I don't feel up to recanting it all right now. The kind of good news is that Dr. VanHare has a pretty neat technique where he actually has the interventionist (Dr. Balzer) put a hole in one of the baffles to allow for better access. I'll post more about it all when/if the time comes.

Connie's now trying some teddy grahams and chocolate milk.

Thanks for your prayers.

Starting

They just got underway. They said "he's a fighter" regarding his nonstop crying whenever anyone came in his room. He got his propafal and drifted off with no dropping sats so we left.

We're here

And all checked in to rm5 of the PICU. Connie's watching Diego while we wait for admitting to come up and get our info.

Home from the Appt.

Dr. Bromberg made a special trip in to the office to see his favorite patient today. We got there two minutes before the doctor and he came out himself to the waiting room to get us. Connie was interrogated where he was found to be in atrial flutter AGAIN (insert frustrated sigh). He tried to pace him out of it, but Connie didn't like that too much. A couple of attempts was all he could take. It was making his A rate 300ish and his V rate 150ish. So now we're all set up for cardioversion tomorrow morning at St. John's. He'll be admitted to the PICU at 7am and the procedure should be at 9am. Hopefully we'll be outpatient as long as Connie doesn't throw any curve balls in there. While they are starting the IV, they will draw a bunch of labs to check liver and thyroid function and get another INR level. If the labs show he's tolerating the current amiodarone dose, meaning it isn't hurting those other systems, then his dose will be increased 50% so he'll be taking close to 20 ml! I joked with him that I'd have to put it in a juice cup now instead of a syringe. The other frustrating thing about all this is that the mode switch was not switching again on the pacemaker. That is getting really irritating and tomorrow when we get more time to talk to him, I'm going to really press for some answers on that one. This is getting really old, making these monthly hospital trips. The good news is that while this is frustrating and a little scary, it's not nearly as scary as surgery or something really invasive. I'm so grateful we're not talking about that now.

High Atrial Rates Again. . .Waiting

Well, Connie has been showing signs of something being awry since Saturday. We've been told recently to see if he strings together a few days of that, since sometimes regular, healthy toddlers can have "off" days. Well, after three days of a poorer appetite, clingy behavior and extra sleepiness, we sent in a pacemaker transmission. Sure enough, he's been having high atrial rates since Saturday, on and off. One episode this morning at 12:30am lasted over 47 minutes. Then again at 2:00am he had another period lasting 30 some minutes. Colleen at Dr. Bromberg's office read the report while I was still on the phone and said she has some questions about it and would page Dr. Bromberg. She called back and said to come in. So now we are going in this afternoon sometime between 2-4. She said he'll probably interrogate the pacemaker again and then decide what to do from there. She reiterated that we shouldn't hesitate to call, even if we feel like we're being hypochondriacs! She said, "Especially with him!! Just call. Better to be safe than sorry." Please pray that God will guide Dr. Bromberg to make the right decisions for Connie and that we can avoid any invasive procedures. I'm not quite sure what the next step is when the medication isn't effective. Is it more medicine? Is it attempting the risky ablation? Who knows.

Opthamology Appointment

Connie went to the eye doctor yesterday morning and afternoon. Did he go twice, you ask? The answer is no, but his appointment was in the morning and we didn't leave there until the middle of the afternoon! We originally had an appt. for back in June, but Connie was inpatient at Children's then and we had to reschedule. The closest appt. time they could give us was for a month later, which we took. Our appt. was for 11:00 am. By 12:15, we still hadn't even been called back. Finally, we got called back around 12:30. We were back there for five minutes (at most) and the optometrist dilated his eyes and sent us back to the waiting room (which was overcrowded and had no seats available except on the floor). We went for a walk down the halls and came back in. About 40 minutes later, they called us back again and the same guy looked at Connie's eyes. After five more minutes of looking at his eyes, they sent us back out to the waiting room until the doctor was ready to see us. At 1:42 they called us back into the room where we waited until 2:00pm to be seen by the doctor. He came in and said that Connie's eyes are worse in relation to the far sightedness. Since he's non-compliant, meaning he isn't cooperating wearing the glasses, he's letting us go another six months without them. If, at that time, they are still getting worse or are not better, then he will need surgery to correct the far sightedness. It is laser surgery and is the same thing adults get (lasik). I asked if he was comfortable doing this on a cardiac patient and he said he's only under anesthesia for 20 minutes for this procedure. So, we'll see what happens when the time comes. The thought of surgery makes me a bit nervous, but it does seem better than a lifetime of glasses.

No new meds

So, tonight at dinner, Connie was standing on the back of the restaurant high chair and it tipped backward and cracked him in the mouth. It cut the little skin between his gums and upper lip. We were worried it wouldn't stop bleeding with him being on Coumadin. Luckily, it did stop bleeding and he didn't seem terribly upset about it or act like it was hurting him so we dismissed it. A couple hours later, it occurred to me that he had a cut in his mouth and there might be a risk of bacteria entering the bloodstream which might lead to endocarditis (infection in the heart). I know when he goes to the dentist, he'll have to take antibiotics ahead of time to prevent this and so I called the doctor to see if he needed to be put on something in this case. Dr. Bromberg said that studies actually show that the bacteria that enters the blood stream during dental procedures leaves the body within 45 minutes, which is why the drugs need to be on board ahead of time. So, by the time I called, any bacteria would have already left his body, meaning there is no need for an antibiotic AFTER a cut in the mouth. He jokingly said that the thing to do next time is to put him on antibiotics BEFORE he hurts himself (ha ha). We do keep it interesting though, huh??

Ella has been rescheduled for her double switch on Friday, July 31. Please plan to join us again in prayer.

Ella Update

Our little L-TGAer who was to undergo her double switch with Dr. Bove today ended up having her surgery canceled moments before they took her back to the OR. Her parents already had their gowns on and everything to carry her in. An emergency case came in that required ECMO (longer term bypass) and it was the last ECMO unit in the hospital. Dr. Bove did not feel comfortable doing the operation without having one of those units as a backup in case her little body needed it after the surgery. So, now her parents will have to ride the emotional roller coaster a little longer. As rough as it is to be delayed, I'm sure they are relieved that she was not that emergency case. That kind of helps to put it in perspective.

I'll update to let you know when they get a new date for surgery. Dr. Bove was going to try to move some things around in his schedule to try to get them in in about two weeks.

To update a bit on Connie, he's had four nights now of "tough love" where we've been letting him cry and when he wakes up at night we've not been going in. So far, so good. He's down to crying for less than 10 minutes and only waking up once or twice and turning his music back on and going back to sleep on his own. It's such a relief! Now if we can just get him to stop demanding Cheez-its for every meal or snack we'll be getting somewhere!

All Star Parade

So the All Star Game returned to St. Louis and, although we had no tickets, we didn't want to completely miss out on the festivities. After lunch with Great Grandma O'Leary and a short visit, I headed downtown with the kids and the double stroller ready to take on the crowds and fun. We found a meter close by and only had to walk three blocks. We found a second row spot to camp out in and watch the parade. Unfortunately, neither of the kids is old enough yet to really understand or get into the excitement of the event. Mookie was looking forward to a parade and she assumed (as did I) that it would at least be of the caliber of the O'Fallon 4th of July parades that she has become accustomed to year after year. She was disappointed when not one single sugary bit of sustenance came flying at her or anyone else for that matter. And by the time the parade participants got to our end of the route, there were few souvenirs left to be thrown. A 12 year old girl in front of us caught a little soft logo ball that was thrown and gave it to Mary Kathleen. Mary Kathleen sat on my shoulders and Connie spent most of the time playing with the iPod in the stroller! Both of them fell asleep a little more than halfway through the parade. On our way back to the car, we ran into Aunt Barb and her gang of kids and grand kids. We chatted with them for a minute and then headed on back home. After I got everyone safely packed in the car and navigated my way (without a GPS) back to Hwy 70, I honestly felt like Superwoman or something; like I could take on the world!! I don't even like going to the grocery store with both of them so I was shocked that taking them to this wasn't a complete disaster! The camera ran out of battery before the current all-stars even drove by, but I managed to get a few pics. Enjoy!
The Wizard and Bruce Sutter

Is it naptime yet?

Mookie with her one and only souvenir (courtesy of another fan)

Pittsburgh's mascot