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.