Couldn't Sleep. . .me that is

Connie had a great night. He did wake a few times when Nurse Maureen "Mo" would bother him, but she said he wasn't panicked that I was down the hall. He sat up a few times and even had a few sips of juice and then once, when she patted him for a minute, he covered his face with Monkers to kind of play hide-and-seek with her:)

I had the chance to look up more info on Cardioversion, the name of the procedure that we think he will be getting around the middle of next week. Click on the word to find out more. I'll also post the link on the right side of the page with the other informational links. There are some good illustrations showing what atrial flutter and fibrillation look like.

Six Flags, Anyone?

I feel as if I have a season pass there because this is one heck of a roller coaster. Dr. Bromberg came by this evening and asked about his day. He had generally the same amount of awake/asleep time but did eat a bit more. He said that the function on the echo looks better than Saturday, and frankly, doesn't see a difference between his echo in October and his echo today. He emphasized how hard he's been looking at his records side by side and how he really feels he knows now what is going on with Connie. He says he thinks this is the atrial flutter and knowing how sick he was when he came back from Michigan and how long it took him to recover, he just thinks we're kind of facing the reality that he takes longer to bounce back. He thinks this is going to take some time. His INR levels came back saying he's already in the target range meaning he's on too much coumadin and we cut his dose in half. We'll check levels again soon to see how he is doing. He thinks that we can manage this and keep him out of the hospital with lasix, coumadin, digoxin and raising his enalapril considerably. He's going to try to turn off the milrinone tomorrow and if he goes 24 hours with no milrinone and is able to eat enough without vomiting and staying awake a bit more then we will be looking at maybe getting out of here on Wednesday some time! We'd then be looking at outpatient labs on Friday and going into the office to be checked out and then again to the office on Monday and scheduling the cardioinversion for Tuesday of next week. It's kind of a balance between doctor schedules and where Connie is clinically. His blood is already in the thinned target range so that lowers the risk of there being a clot. Dr. Bromberg said the timing of it is a matter of him weighing the risks and benefits. We talked some time about the possibility of pacing both chambers since presently he is only being V-paced. He said that it wouldn't prevent this from happening again. He already has a lead on his atrium and Dr. Bromberg could turn it on. Right now it is only set to beat if his rate dips below 80. He said it wouldn't matter if the beat was generated from his atrium or from the pacemaker. The problem is when the signal hits scar tissue and goes haywire.
I did get teary when I told him I was scared to death he was going to make us drop an NG tube. He said just keep trying to sneak what we can in him. We are literally aggravating him to death with offers of food and drink. I pretty much stand there with a cup in his face while he plays or watches a movie, but I guess that is what it's going to take for awhile.

So, it was a good visit and we are hopeful for another day of med tweaking rather than surgery prepping.

Keep the prayers coming. Pray specifically for Connie to regain some appetite and tolerate eating. Also pray that his heart tolerates losing the assistance of the milrinone tomorrow.

Dr. has been in

and he is a big believer in what the liver can tell you. Conway's liver is still very full of blood, indicating blood backing up into the heart (heart failure indicator). He is not pleased with his intake and output either so he's ordered the echo for today, is restarting him on Enalapril, the blood pressure med he was on at home, has ordered oral lasix on an ongoing basis and now demands a calorie count. Here's the part I don't like. If his actual intake is considerably lower than it should be (which it is right now), they may place an NG tube and basically force feed him. I can't believe we're talking about NG tubes. I'm so dreading that. They also want another line in him so this afternoon he will get another IV and tomorrow he has to get a lot more labs done. They want another INR along with other stuff. His potassium is too high so he's been switched to an IV fluid that doesn't have potassium in it. We now have to write down every bite of food he takes in and count the calories. I have been pretty good about remembering it all anyway, it's just the pressure of it all now.

So, Dr. Bromberg has made some changes and said that he just doesn't want to draw this out any longer than necessary. He is trying to be conservative, but all indications are pointing to this not resolving without surgical intervention so he's touching base with Dr. Balzer today about setting up a cath for later this week at Children's. Now the concern is that he'll be a bleeding risk since he's been started on coumadin so we may have to discontinue the coumadin for a period before we can go in for that. We'll see what Dr. Balzer says.

This is not the news we were looking for, but I am tremendously relieved that Conway is content. That's the most important thing to me and makes this whole thing a lot easier to bear. When he lays there miserable, like he was before we started the Milrinone, it's just so much harder to take. At least now he's enjoying some things and showing some sort of personality. He even covered his eyes and tried to count to play hide and seek with Dr. Bromberg. What a trooper. I know that is God giving him some peace. That's what I've been praying for and He's answering our prayers.

Will post when I know more. . .like after the echo. . .if he lets me.

Take 2

Well, he never fell asleep at 8. He acted again like he needed to poop but was having trouble. It's so hard to get the timing right on everything. We wanted to give him a suppository, but then we don't want him to poop on the cotton balls in his diaper that he hasn't peed on yet. They want to collect the pee (doesn't have to be sterile) to do cultures. No fever or anything, just standard. So, we have to wait for the suppository. Then he was due for his digoxin but she's afraid to give it and then do his needle stick because we don't want him to throw it up. He was acting tired again so I said let's just go ahead and do the stick and then give the dig and then let him sleep. So that's what we did. We sat him up and hung his leg over the side of the bed and she got blood pretty easily from his toe. He cried, but not constantly and not as hard as the times in the past. I think he likes Nurse Molly:) He was so brave he got a basketball sticker and stuck it right on his gown. Now he's watching an Elmo video in bed and thinking about a nap.

Recap of the morning

Connie fell asleep about 11:15 last night. He just lay peacefully in his bed for about an hour before finally falling asleep. I went to the courtesy room to rest and the nurse came in about 6:15 to tell me she needed to draw blood before her shift was over. The test they were doing required a venous stick and not just a finger prick. So she woke him up putting a warmer on his foot and one on his hand. I held him and she got a vein on the first stick. He cried and cried but was brave. He finally settled down for some crackers and juice and Max and Ruby when she came in to tell me that the cap wasn't on right or something and the blood leaked in the bag on the way to the lab. Needs more blood. Ugh! Now he's eaten and is likely to vomit if he gets that upset again so we're waiting to restick him. He ate a little cheerios, some crackers and about 1/4 donut. He also had about five bites of scrambled eggs and one bite of a nutrigrain bar. A few sips of milk and then he was ready for bed again by 8am.

After he wakes up we'll try for more blood and then that should be it on the procedures for the day. There was some talk of Dr. Bromberg wanting another echo today and I'm pretty sure if the milrinone is to be stopped, he'll want to see the LV function on echo first. Haven't heard from him yet today.

Will update when we know more.

Ahhhhh!

I'm sure Connie feels just as good after getting cleaned up as I did after my long awaited shower this evening. Nurse Judy hooked him to a portable monitor and we carried him over to the sink to wash his hair and then he got a wipe down and smells like lavender. If Dr. Bromberg okays it tomorrow to take the leads off he may get to splash around in a little rubbermaid bucket. You should have seen him tonight when I asked him if he wanted a bath. He agreed with his whole body. I don't think he had the same thing in mind as what actually happened. He kind of freaked out having his head under the running water. Probably thought it was some new kind of torture. He cried through the whole thing but settled quickly and is now drifting off to sleep with the music of the hospital calm sounding music channel. What a big day.

He ate more crackers and drank more than a whole serving of orange juice. I can't believe with everything that's been offered to him he prefers saltines, but whatever. Dr. Samples said that kids this age have a way of self-regulating with diet and his body knows what he can handle or what he needs and is taking that in and nothing more. He wouldn't even consider eating one of those smiley faced tater tot things with ketchup.

I just can't explain the relief I feel watching him eat crackers and comment to the TV while he watches Max and Ruby.

Smiling

We got Connie's first smiles this afternoon! Grandpa Beckemeier was unable to visit because he's had a cold recently, but he sent up four balloons from the gift shop along with some toy cars. When they were delivered to the room, Connie's face lit up. He LOVED his "melmo" balloon and thoroughly enjoyed bouncing the balloon off of my face. We snapped a couple pictures and I'll get those on as soon as I can. He was awake a good part of the afternoon and enjoyed seeing some visitors briefly. He fell back asleep around 6pm or so.

While we were sharing stories about cute things he does at home, he picked up on that and started re-enacting or just 'showing off' a bit. I'm no doctor, but I'd say that means he's feeling better. . .The other great news is he ate an entire bag of Baked Lays sour cream and onion chips that he saw sitting on the bedside table! Not exactly my choice or what I have been ordering him, but at this point, we'll take whatever works!

His Lasix worked again today as he had a major soaker diaper. Went through his pajamas and even required a bedding change.

Mid-day update

Dr. Bromberg has been in and reset the pacemaker to 100 bpm. He was hesitant to turn it too far down, too fast yesterday. He was happy to hear that he had a restful night and kept down some crackers and cheerios. He and Dr. Samples would like to see him awake a little more and not so lethargic, but more playful and eating better. He said he probably shouldn't have made any promises yesterday about turning this failure around just by lowering the rate. With Connie coming into it with a couple of strikes already, meaning that he already didn't have normal function due to the leaky valves and somewhat stiff LV, that it was unrealistic to think that he'd bounce back very overnight. He said it may be more of a four or five day thing. He's hoping he is better clinically and that he can stop the milrinone soon. Ideally it is a 24-72 hour fix. If he doesn't tolerate coming off of it or doesn't improve drastically from where he's at now in the next four or five days, he thinks it may be time to take a look at the valves (via cath) and talk about whether it's time to repair or replace a/some valves.

Overall, he's pleased with the progress. His lungs sound better than yesterday. He's going to give him more Lasix today though which should get rid of some more of that fluid and make him feel better. He'll get a venous blood draw tomorrow to check his INR levels for the coumadin and probably get that again on Friday.

Say a special prayer for Cece today. In about 45 minutes she is set to receive her First Holy Communion. The chaplain came in today to offer prayer and communion and I told her about Celeste and we said a special prayer for her.

Will update more if anything changes. . .

A little video and some pics to make you feel better

We took some video of Connie last night and this AM after the milrinone was started so you could see him doing better. He ate some cheerios and watched some Max and Ruby this morning and now he's napping again. I found liquid on the floor near his pump and turns out that his Milrinone was unhooked and dripping onto the floor! The night nurse admitted her mistake to the Intensive Care doc who is on now and she said it couldn't have been unhooked for more than an hour or so. She had unhooked him to detangle the wires and then forgot to hook him back up. The doctor said it shouldn't make a critical difference being off of it for a bit.

Photo and video editing at www.OneTrueMedia.com

He soooo needed that

Connie had a great night. He hasn't been this peaceful in over a week! St. John's offered us a hospitality room right down the hall so Greg stayed in the room and I went and slept from about 10:30pm-5:30am. I only woke up once! I panicked, thinking I missed the 5am blood draw but the nurse told Greg she'd wait until 6 because she knew I wanted to be there and since he was sleeping so well. Even though I don't want him to need it right now, I'm so glad the Milrinone is giving him some peace and the ability to rest. I'm anxious to see what his demeanor is like after getting some much needed sleep and now that his heart has been relieved a little.

I guess we all have a lot to be thankful for and a lot to talk to God about this morning at Church.

I looked up amioradone (sp?) and found the side effects. Let's just say I will stop getting ahead of ourselves and just keep praying that these flutter episodes happen infrequently enough to stay off of it!

Not so fast. . .

Well, the reduction in heart rate to a max of 110 didn't do the trick to helping him feel better. He threw up big time around 6:30 (from his 2:30 lunch and 4:30 juice) and Dr. Bromberg came back and said that he's just going to be harder to bounce back from this failure than he thought. Now we are not coming home tomorrow as they have started him on a milrinone drip (IV). They have to draw blood twice a day to check his levels so that consists of a toe prick and a ton of squeezing. Now that he's on coumadin, that should leave some nice bruises! The coumadin levels are not built up in his system yet so he's not bleeding easily just yet.

He was getting the most sound sleep he'd had in days when they had to come poke him. He's been up since and had some saltine crackers and sprite. Dr. Bromberg wants us to go a bit easier on the tummy so we didn't order him a dinner of real food. He might get some cheerios later if he shows any interest. He is sitting on Daddy's lap watching a Baby Einstein video from Child Life Services. Ms. Chris would be so proud of all the words he's practicing while he watches. He blew Nurse Laurie a kiss when she left and said bye and waived. She'll be back in the morning and has requested to have him if she doesn't get transferred to the NICU or something.

So, we've had a bit of a set back, but nothing we can't find a way to manage. Dr. Bromberg will be back to check on him in the AM and gave them his numbers even though he's not the one on call this weekend.

Can I Get an AMEN!

Well, it's just about the best news we could have hoped for. Connie is in Atrial Flutter, which is causing his mitral leak to increase and the left ventricle to dilate giving him the issues with failure. Dr. Bromberg saw it right away when he checked the pacemaker. He tried to convert him to normal sinus rhythm using the interrogation device but it was unsuccessful several times. He tried getting the atrium to fire at 300 bmp and the lower chambers at only 80 but he couldn't get the top chamber fast enough. Either the degree of failure won't let it go that fast or his little heart just isn't capable. That means he needs a cardioversion, which is what you see on ER when they use the paddles to shock the heart. It is painful and he needs to be sedated for the procedure so they wanted to wait until he hadn't had anything to eat or drink for 6 hours before they could give him the anesthesia. Then Dr. Bromberg got to thinking about the risks of him having a clot in his heart and the shocking would loosen it. When you've been in a fib or a flutter for more than 48 hours, your risk of developing blood clots in your heart is higher. When you have a heart like Connie's with lots of scar tissue and a very messy atrium due to the baffles and such, it is even greater that they could hide and not show up on an echo. Therefore, the safest course of treatment at this time is to anticoagulate him for two weeks to make sure that any blood clots dissolve before shocking him. The current plan is to start him this afternoon on chewable coumadin (blood thinner--kind of a yucky thing, but temporary so we're not complaining), give him a dose or two of lasix to get the fluid off his lungs and help improve the failure, and lower his settings on his pacer to prevent his heart from beating over 105 bpm. He may even go down to 90 tomorrow. We stay in ICU tonight and might come home tomorrow! He will still be in A flutter, but his heart won't be suffering from it because of the decreased settings and the fluid loss. In two weeks well go back to ICU for the cardioversion shock with the paddles. It should be an outpatient thing.

Praise God. It looks like we're avoiding surgery and caths for now! This is a common complication for kids who have had a Senning procedure, or a Mustard for that matter, (the second part of Connie's switch operation) and it is likely that it will happen again. If it happens every few years it is something that we can kind of live with. If it would happen again in less than a year, we will need to put him on a strong drug called amiorodone (sp?). It has a lot of side effects potentially, but the other drugs that are typically used, like beta blockers, are very ineffective on kids like him.

Our prayers have been answered. We seriously thought we'd be moving to Children's by the afternoon and by mid next week be back in Michigan facing another open heart surgery. Dr. Bromberg doesn't see any difference in the conduit narrowing from last October's echo and frankly, that is a totally unrelated issue to what we're dealing with now.

Normally, a working AV node would have caught the fact that his heart was trying to beat 270 times per minute but his pacemaker kind of covered up that fact and was letting every other beat through. So on the monitor, it only looked like 135 was his HR. I asked him why it didn't show up on the pacer check we did last Thursday and he reviewed it again, saying Colleen pointed out an area on it to him but it only showed the rapid rate for 2-7 seconds so they thought it just wasn't capturing or something. He's going to talk to the CareLink Monitor rep about how to correct that so that this could be caught sooner next time.

We have been so happy with St. John's and especially Dr. Goel and Dr. Bromberg. Please say a prayer of thanksgiving for these two wonderful men.

p.s. Mary Kathleen asked grandma and grandpa if she could say a prayer for Connie and on her own asked Jesus to please keep she and Connie well so that no one has to worry anymore. She is such a believer and she justs trusts Jesus with her little squinting eyes and praying with all her might for him to take care of us all. She is such a blessing. I came home for a bit to let the dog out and brush my teeth! I'm updating from here because someone was on the computer in the RMH room at the hospital and our iPod is not liking their wi-fi too much. We've gotten some messages of support and thank you for those. They really help us feel not so alone! We love you all!

Get On Your Knees People

Dr. Goel just reviewed the cath and gave us the news we don't want to hear. He is in moderate to severe heart failure. His liver is being affected. He is to the point that he can not leave the hospital and will require IV heart failure medications, lasix and milrinone. Dr. Goel wanted to talk to Dr. Bromberg (our actual card) to decide if he wanted him transfered to the CICU at Children's or just stay here until Monday. He is getting set up for a cardiac cath on Monday at Children's to get a better look. His LV is quite dilated and the conduit is very calcified (has become bone). Significant narrowing and needs replacement. So we're waiting to hear after Monday what the timeline is for another open heart surgery. Then, while Dr. Goel is on the phone with Dr. Bromberg, he remembers me asking about Atrial Fib going undetected because of the pacemaker. He says he's not concerned about Fib, but the two docs think he may be in Atrial Flutter and if he's been in it for several days, it could explain the sudden failure and severe mitral valve problems. Dr. Bromberg is on his way in to interrogate the pacemaker since he's an electrophysiologist and he'll know if it's A flutter. If so, they'll try converting him (might be with the shock paddles) and once he's converted, his symptoms could signinficantly improve and rather quickly. That sounds to me like we could avoid surgery if it's just A flutter! Please pray. We'll update when we know more.

Picu update

Dad got here an hour ago with fresh clothes for mom. Good thing since Conway threw up on her. He's getting his echo right now while he eats a chocolate chip cookie from the ronald mcdonald room and watching tv. Dr. will be here soon to review echo and we'll post mrs then.

ER update

They did a BNP blood test. They like to see it come back below 125. Conway's came back over 7000. Yep, that's 7 and 3 zeros, indicating "severe heart failure." The test is around 80% accurate. The echo in the morning will tell us much more. It's looking like our hope that it was just a virus is fading fast. He's being moved to the ICU so the nurses can keep a close eye on him. Mom is with him.

ER update

Chest x-ray shows some fluid on the lungs. Dr. Goel (dr. Bromberg' assoc) is coming by in the morning. Connie will get an echo done. Mom's staying tonight and dad's going home to take care of Mookie and Belle. Will post when we know more.

Posting from the ER

Our boy has not been himself for the past week. He's been very lethargic with no appetite and much grimacing and frowning. He vomited tonight after eating a pickle and drinking a glass of milk at a restaurant. His heart and respiratory rate are both elevated. They've done an EKG, taken blood and a chest x-ray. The cultures should come back in an hour. They're concerned about a vein in his neck which may indicate blood backing up and the heart not pumping correctly.

New Pics

Big Boy!

This post is two-fold.

First, we want to wish you a Happy Easter! Our family is so blessed to celebrate our Risen Lord. We went to church this morning remembering the Easter Mass we attended in 2008 and the miracle that took place that morning. Just this morning we had a parishoner who we don't talk to often ask about him and she was overjoyed to see him in person and hear the story of his miraculous recovery. He is still in the daily prayers of so many at Assumption and for that we are grateful. While we were waiting for Mass to begin, Connie was showing off for everyone by folding his hands to pray and say, "mmmmeh" (Amen). Everyone thought he was so cute. When someone asked how old he was and we replied that he was two and doing normal two year old mischievous things we were reminded what a blessing it is that he is doing mischievous things and not still laying in a hospital bed. How true.

For the big news. . .
Connie is officially a big boy! He's been sleeping for naps and all night in his big boy bed. It is a stagecoach bunk bed but we don't have a top bunk on it. We're in the process of converting his room to a western themed cowboy room. We still have to paint three of the walls and get some more "props" for the walls and plant shelf. He's so cute in his bed. He loves it! The first night he got out of bed four times before he fell asleep and he'd just start playing with his lightswitch or open and close his door. Greg would tell him to go back to bed and he'd say, "uh oh" and head back in. Most of the time he just goes straight to sleep, but a couple of times he's gotten out of bed. Once he falls asleep he stays in there all night! We've closed the gate at the top of the steps at night and put a monitor by the stairs so we can hear if he gets up or if Mookie needs something. We are so proud of him! Saturday morning we slept in a little and when we came up he was standing in his doorway waiting for permission to come out. Then this morning he woke up and went to tell Cece he was wet and needed to be changed. He doesn't talk so she didn't know this and she told him to go back to sleep. Pretty soon his music started playing again and he was in there laying quietly when I walked in to get him. He's such a good boy! Here's a pic of him sleeping soundly Friday morning when Greg went to get him up for breakfast.

Easter Egg Hunt

Connie and Mary Kathleen attended the big Webster Groves Easter Egg Hunt at Bethesda Orchard this past Saturday. Great Grandma O'Leary invited us and living with Bunny Girl, we never pass up an opportunity to visit with the Easter Bunny himself! First was the hunt for 1-3 year olds. Connie wasn't sure what all the fuss was about as last year he was not walking and not even eating and pretty much confined to the stroller the whole time. This year he gladly picked up eggs but was much more concerned with shaking them and finding out what was making that noise than actually scooping up as many as he could. He found about four or five and then made his way over to Great Grandma to help him with opening them. Once he discovered there was candy inside he was thrilled. He LOVES chocolate!

Then it was on to Mary Kathleen's turn, the hunt for 4-8 year olds. I use the term "hunt" loosely. The children did not have to search for eggs. The eggs were just strewn about the lawn so all they had to do was pick them up. Given the fact that she is not aggressive and was at the back of the pack, she did not get a single egg! 3000 eggs were scooped up in a "record" (according to the announcer) 52 seconds. The child was obviously distressed about this and was not herself. I'm not making excuses for her because she made some poor choices in her behavior, but I do feel sorry for her at the same time. It is so hard to be a parent! Unfortunately we had to leave the egg hunt early and miss out on the raffles and snacks. There's always next year, I guess!

Here are some pics from the day:

Preschool and Grandpa Updates

Connie went to his first day on Monday. Parents were asked to stay the whole time, but were only in the room for the first hour. Then they had an orientation without the kids and then could stay behind the observation window the rest of the time.
Here are Greg's notes from the morning:
1st hour played with Connie with students present. Next 45 minutes orientation away from kids. Connie cried whole time. Is now engaged and playing well. There is a two way mirror for us to watch. This is going to be great for socializing Connie. I am a bit concerned as Conway seems MUCH younger than the others. I'll ask teacher what to do if he poops, and to make sure Connie won't be too much of a burden for them. Oh God, they just gave the kids glasses of water. Goldfish forthcoming. He's SO cute sitting at the table eating with the other kids. Oh no, it's not water. He's getting OJ. Drinking it fine. He loves it! I can't believe he's actually sitting calmly there in a chair eating snacks with other kids.
35 minutes left. Still eating goldfish. Another kid's having a tantrum. But not my little boy!
Connie was just taught to clean up his snack and throw away the leftovers.
He's off to play. Looking right at home.
Conway 's table is getting a puppet show.
15 minutes left, connie's crying at the door. Just got comforted and seems to have settled down.
As you can see, it was a busy morning for the both of them. When they got home, they had lunch and everyone took a two hour nap!

Greg said that it was heartbreaking watching him walk around signing for a drink and not getting one. I just about died because I had emailed the teacher with a list of his signs and what they mean. Here I am being over protective and thinking that maybe he's thirstier than most kids because of his heart or something and he should be able to have a drink whenever he wants one. Greg said it wasn't too long before they had the snack and gave the kids a drink anyway so it's not going to kill him to wait a bit. He drank out of a big boy cup with no lid and had no problems. We decided that at mealtimes at home we would get rid of the lids on his cups and let him drink like a big boy. He did great at lunch and dinner! He was so fascinated with the cup at dinner that I refilled his 1/2 glass of milk six times! He barely ate because he was so 'busy' practicing his new skill! Did you ever think you'd see the day?!

As for Grandpa, he's been moved out of ICU and is in the step-down (moderate care) unit. They did a repeat CT scan and the bleeding has stopped, but the blood is still on the brain and has not resorbed yet. There was talk about him coming home yesterday, but after the scan they decided not to. To make matters worse, they x-rayed his shoulder because he's been having so much pain since the fall (that's where he tried to catch himself) and turns out it is fractured! Late yesterday afternoon he was waiting on a consult from Dr. Koehane, an orthopedic surgeon. Please continue to pray for him. He is in good spirits and feels pretty good except the shoulder is bothering him quite a bit.

Another ER Visit

This time it was not for Connie, but rather, my dad. He's had a small hemorrhagic stroke and had a brain bleed last night. The neurosurgeon is convinced that the bleeding has stopped or else he would be dead. He told my parents that these are the kinds of strokes you die from. He is in the ICU and not allowed to sit upright at all. They gave him some blood platelets last night to help his blood to clot on it's own and the doctors said that his condition does not require surgery, not at this point anyway. Please continue to pray for him and his recovery and especially that this does not set back his recovery from the back surgery.

Yesterday he fell going up the steps and said that it felt like his leg gave out on him. He crawled up to bed and laid there about an hour and then when he tried to get up to go downstairs, he dropped the cup that he was holding and started slurring his speech badly. He could barely stand so my mom called 911 because she was afraid to try to take him herself, thinking he might fall on the way to the car. By the time he got to the hospital he was acting normal again. They did a CT scan and found the bleed and decided to admit him and treat him with platelets. They said that they will be watching him closely for at the very least a couple more days.

Re-eval and prayer request

We had Connie's re-eval yesterday to determine what therapy needs exist for the next six months. Carey (coordinator), Deb (PT) and Chris (SLP) all attended. Of course they fussed over him because he's so darn cute. He graced them all with his piano playing abilities and showed off his new "Melmo" (Elmo) books he had just gotten from Barnes and Noble earlier in the day.

PT: Deb is impressed with his ability to walk down the slope of the front yard and to go from grass to concrete surfaces and down different levels and small steps. She is still concerned about his ankle strength and wants to continue getting better at tip-toeing. He is going to get new orthotics but they will be the same kind (Sure Steps) as the one's he's in now. I'm so bummed because I desperately want him to wear those cute navy blue stride rite fisherman sandals this summer, but I guess we'll wait one more year :( He'll look darling in his new nike kicks though. We're decreasing his PT services to one hour every other month! We'll have to get our Ms. Deb fix at church, I guess!
Speech: Chris says Connie is making progress every week. He is still leaving off word endings and initial consonants so his intelligibility is rather poor. We are trying to use the phrase, "Use your words" with him to get him to stop relying on signs and gestures to get his point across. It will be hard for us to do this because we just know what he means and he doesn't have to use speech. It will be good for him to be around new people and kids when he starts "school" next week and maybe he'll pick up some new words and good speech habits. She said since he is so smart we are going to have to sabotage him and "ruffle his feathers" a bit to get him to verbalize more. She is going to try to see him a few extra times at school and try to see if a new environment is motivating for him. She'll keep coming to the house 1X/week. We asked about increasing, since the ped. recommended it, but since he's showing improvement, it wouldn't be covered at this point.

The team will reconvene in late Aug. or early Sep. for the next re-eval and to start planning the transition to services from the local school district. Then they will have us sign releases to communicate with the early childhood people in Fort Zumwalt and then just before he turns three FZ will conduct testing to see what he qualifies for. He may qualify for speech still, which could mean that he would be attending United Services for his therapy and receiving it during preschool setting. It may mean that he will go there for preschool full-time, but we're not sure yet what his needs will be at that time. If that were the case, he would start right when he turns three rather than waiting until the following school year, the '10-'11 school year like we would have done if we put him in Mary Kathleen's preschool. That's still some time away, but it really hit me when they brought it up yesterday. I guess it will be here before we know it.

Now that you've gotten the latest on WonderBoy, I want to ask that you pray for a fellow L-TGA kiddo who will be undergoing his big double switch operation like Connie had next Thursday. He lives in London, UK and his name is Oscar. He is a lot older than Connie was when he had it done (he's three now) and his mom is worried about the emotional trauma involved. He's saying he doesn't want to have it done and asking why it has to be done. Please pray that God gives his mom Laura the right answers for her little boy and that He gives her peace to know she's made the right decision. We know all too well the feeling of taking a "healthy" boy in for surgery and the questioning and doubt that looms with such an action. I'll post updates as soon as I hear how he's doing.

Just Back From the ER

with Connie. We left the house at 8pm and just made it home at 12:44am! Not too long after dinner the kids went out back to look for rainbows. On his way back in the house, he tripped on the threshold and hit his head on the door frame. He cried pretty hard but I just figured it hurt. I didn't see any marks right away. I sat him in his seat for some strawberries and when I finished slicing them, I saw the blood on his eyelid. He had hit that orbital bone and split open his eyelid right above his right eye in the corner nearest the temple. I called Dr. Davis' exchange and the nurses from Children's hospital called back. He was acting fine and it had stopped bleeding. It isn't very big at all and they asked all the questions that they ask for cuts and also the questions for head trauma. All checked out great except for one. When she heard that the cut was on the eyelid she said that the guidelines they have are to go to the ER. Doesn't even warrant a call to the doctor, it's supposed to be a trip in. Ugh. Greg and I really didn't think they'd do anything for it, but I was kind of glad to get a second opinion. We were advised to go into St. John's since they already have a record of him there and both his main doctors have privileges there. They were packed. There were kids all over the place who had obviously been puking because they were carrying around buckets with them. They were nice enough to let us wait in a little storage room that patients don't usually go in so that we could hopefully prevent Connie from getting any bugs. They didn't have any rooms open up until after 11pm. It was a long wait and lots of entertaining. It is exhausting trying to entertain a two year old when you don't want him to touch anything! He climbed up into his stroller and then jumped down about a gazillion times then when we finally got an exam room he jumped up and down on the bed about a gazillion times. He definitely didn't act like he needed to be there, but we had to follow the "protocol". Finally we got checked out and we were told that sometimes less is more and in the case of a "deep superficial cut" like he has, it is better to leave it alone. We will wash it daily with soap and water and apply an antibiotic ointment that is safe to get in the eyes. Other than that, it should heal nicely and the only time we'll be able to notice it in the future is that it may stay white when the rest of his face tans.

I'm off to bed. Hopefully he'll let me sleep in tomorrow (I mean. . .today)!

2 Year Check-up

Conway went to Dr. Davis for his two year check-up today. I waited a few weeks after his birthday so I could take him during my spring break. He weighed in at 26 lbs. 4 oz. which puts him barely at the 25th percentile. Looks like we'll be keeping the whole milk for another year and trying to add in some good calories where ever we can. He loves "nog nog" (carnation instant breakfast chocolate flavor) added to his milk so that's one snack we'll be trying to make sure he has everyday. He's 34.5 inches tall which is in the 60th percentile for height. I'm not too worried considering Mary Kathleen had almost the exact same stats at her two year check-up. She was 34.5 inches and 25.4 lbs. Of course, she's a girl, but still. Now she's in the 75th percentile for height and weight!

Dr. Davis said that since he isn't putting two words together yet (like saying "dog bark") that we might want to consider increasing his speech therapy. He is happy to see that his receptive language is on target though. He passed all the little screenings for autism and lead poisoning. He had his lead levels checked several weeks ago when his dig levels were checked for Dr. Bromberg so we already knew that wasn't a concern.

I asked Dr. Davis about his opinion on Connie getting an April dose of Synagis, the vaccine for RSV that preemies and heart kids get from Nov-March for the first two years of life. He said that since Connie will be starting "preschool" next week that it would be a good idea to get one more dose in since the RSV season is running late this year. That means that most of the cases they've seen have been recently and the season isn't "over" yet. We put a call in to Dr. Bromberg and his nurse, Kelly, agreed that with being around other kids it would be a good idea. So now they will try to coordinate benefits with insurance and insurance will probably deny and then we'll probably have to fight and write letters! Nothing is easy. It is all about money and the insurance company doesn't want to spend another $3300 for another month's injection.

Stay tuned next week for an update after Connie's first day of preschool. He'll be going to Ft. Zumwalt North's Child Care Lab three mornings a week for 2.5 hours per morning. Monday is an Open House where Daddy will stay with him the whole time and he'll get comfortable with his classroom and the new people. Then Tues, Weds and Thurs he'll go to "school". This program lasts until the middle of May. It should be a good experience for him to be around other kids his age. I'm hoping his speech development will really take off, but I'm crossing my fingers that all the winter germs are gone by then!