What have we now. . .?

If there was any doubt in our minds that Connie's recent behavior was not related to being two, that is gone after today. We had a few pretty decent nights and then last night he cried for 10 min. at bedtime, woke up at 1am and woke up at 3am crying. No, not crying--screaming. I've read about night terrors and I don't think that is it at all. It is that he wants to be with us, pure and simple. He's not getting his way when he has to go to bed and be away from us. It has carried over into daytime behavior a tad bit as well now too. Today Ms. Deb came for PT. He's been excited about her coming and anytime we even mention her name in our house, he starts showing off all his physical/gross motor abilities. After about 1/2 way through the session today, while he was showing all the wonderful things he can do, I stupidly thought how cute it would be to let him show off how well he plays learning games on the iPod. He showed her how he operates it and then when it was time to work on the next skill (standing on one leg), he freaked out and threw a major tantrum. He was mad that we took the iPod away. We even tried showing him that if he did the new skill once he'd get it back but he wouldn't even attempt it. We had Mookie do the skill and get the iPod as a reward and then we each took a turn. When it was his turn he just screamed louder! Deb tried coaxing him to do another skill (smashing paper cups with one foot) but that was unsuccessful too. He carried on for a good 10 minutes at least probably before crawling into my lap and putting his head on my shoulder. Ms. Deb asked him if he was just done and he said "Uh huh!" We talked for a minute about how it felt better to be calm and happy instead of screaming and mad and he all of a sudden got up and started smashing cups. I don't know if his short term memory just "forgot" about the iPod or what, but he seemed to be over it and cooperated the rest of the time. What a stinkerpot!!!

One funny note to add: Greg has been trying to get that boy to say "Daddy" for about a year now. Everytime he learns a new word or we are practicing words with him, Greg requests for him to "Say Daddy" and all we ever get in response is a laugh or a throaty sound he makes when he thinks he's being funny. Well lately, he's been saying "Greg". It must be my fault, for hollering from the floor I'm on to Greg (on a different floor). We were at my parent's house and someone said something about "Where's Daddy?" and Connie suddenly started walking around yelling, "Graaaaiiiiigggg". Then the next morning, we woke up to the sound of him standing at the gate at the top of the steps yelling down to us, "Graaaaaiiiiiig". Greg told him he didn't know they were on a first name basis!

A Busy Weekend

Connie is resting great now! We had a busy weekend celebrating as Great Grandma O'Leary turned 95, Cousin Jack turned 6 and Cousin Gabby graduated from the 8th Grade.

We ran Connie's insomnia by Dr. Bromberg, just to make sure it wasn't caused by a med he's on or that we're missing something related to his cardiac function. Dr. Bromberg thinks he's just being a stinkerpot and said to make sure he gets plenty of fresh air during the day and suggested we take him swimming to wear him out and cut naps short if need be to make sure he's good and worn out at the end of the day. Well today it worked! Although I don't think he was quite ready to be done partying because he ended up going into the girls' room and crawling up into the bottom bunk and falling asleep!

Little Celebration

because Connie just got his last dose of Coumadin! According to the label, "if therapy with Generic Coumadin Warfarin is stopped, the blood thinning effects may last for 2 to 5 days after you stop taking it." Thus, we will keep up the helicopter parenting a few more days and then relax a bit and let him be a little boy!

Sleep Deprived Update

It is with heavy eyelids that I post this update! Connie has not been a good sleeper ever since the week before he went to the hospital. We are coming up on one full month of poor sleep in this house :( That week before he went in and he was feeling so bad he was restless and not sleeping well and needing us a lot during the night. Then in the hospital he was messed with every hour and when he'd wake up he got used to Mommy being right there every time. Well now that we're home, he's still not back in his good routine. He doesn't seem tired at his normal nap and bedtimes and he's a lot sillier than usual. It's like he's either super silly or super fussy and overtired. Not much in between. We have been trying to do all the "right" things but with maybe a little extra coddling than normal due to the fact that he was sick and we still aren't always sure if his behavior is something heart related or just a phase or what. I hope I don't sound like I'm complaining, because I'm really not. Things could be much worse and I'm just thankful we are home and things are as good as they are. I really just had to find something to write about since somebody gave me trouble today for a lack of updates ;) I'll post a new pic or two and try to get to bed. Sounds like he finally gave up.

Cardiology Appt. Update

We had our follow-up visit today and we were there the full two hours Colleen told us to plan on. He had all the routine checks along with pacemaker stuff and an echo.
Pacemaker Issue:
Dr. Bromberg was disappointed because we were unable to change the mode switch setting to go to 90 whenever he goes into Atrial Flutter. Right now it is set at 100, which is where he gets paced when his heart rate is too low also. So now, if he's at 100, we won't really know if he's in flutter or if he's just too low and needed to be paced. Normally, his rate when he's active is higher than 100 so as long as we check him while he's up and moving, and he's over 100, we should feel pretty confident that he's not in flutter or having rhythm issues. Since pacemakers were designed for adults and not kids, they didn't make them adjustable on the mode switch because adults can tell when they are having rhythm issues and communicate that. Kids can't. So, we'll have to wait for him to get old enough to tell us or for Medtronic to write new software programs that have that capability.
Echo:
At first, Dr. Bromberg described his LV function as "the squeeze not being quite as brisk". When the tech said she thought it had improved based on some other angles and showed him these, he agreed. He said the only difference he sees now is that the tricuspid valve, which has Ebstein's Anomaly, is leaking a "fair amount". Apparently this is an increase from "mild to moderate". He said that the good news is that if you have to have a leak get worse, that's the valve you'd want because it doesn't impact the LV function. For the first time, they tried taking measurements of the function to have a baseline to compare it to. In the past they have done this more from eyeballing it but this time they are actually plotting points and measuring. The tech said that it's not terribly accurate because of his anatomy and the angles of his ventricle due to the L-TGA, but they wanted to get it anyway. They also took a 3D look and got measurements that way too. She said she and Dr. Bruns would look at the numbers and try to see if they couldn't come up with a number for his current function. The number that came up on the 2D was 59%. I asked where it should be and she said it shouldn't be below 50%. Yikes!! He's only 9% higher! She reassured me that this number isn't totally accurate because of the shape of his ventricle and how it's tilted, that she thinks it's actually higher than that.
Lots of Little Things:
Connie has several issues going on that alone are of little concern. It's kind of the combination of a narrowed conduit, branch pulmonary stenosis, aortic insufficiency, pulmonary insufficiency and a leaky mitral valve that keep us a little more on our toes. Right now, the most problematic issue is probably the valves and so we are watching for symptoms of increasing tiredness or decreased activity levels and the big one, the one the doctor seems to be most concerned about, is how he is growing. He weighs 27.6 pounds as of today and a lack of growth indicates that it might be time to repair or replace a valve. He said you don't need perfect valves, but we don't want it to operate ineffectively to the point that it stresses the heart to where even after repair or replacement, the function doesn't return all the way. If he looks at his growth over a 4-6 month period and doesn't see much growth, he may decide it's time to think about surgery again.
Overall Picture:
Before the flutter, Connie was just being treated as a patient with valve insufficiency and was on track to be seen in the office once a year. Then we had this little hiccup with the flutter issue and some follow-ups stemming from that. He gets to come off the coumadin in one week and no more blood draws!!! After a follow-up in two months, if he's still doing well, he'll be back on the once a year schedule, as long as the flutter stays at bay--and he grows!

Congrats to Mommy and Sissy!

Connie helped celebrate Mommy's M.Ed. in Educational Administration along with big sister, Cece's First Communion on Sunday afternoon. It was a big, happy day for our family. Here are some pics. The first one was from Cece's school picnic on Saturday.

Coumadin Update: Connie went for his blood draw this morning and Greg had all kinds of issues getting it done. He was there over an hour. This despite the fact that last week I went through all the hoops of getting him set up as a "series patient" in hopes of avoiding trouble like this! To top it off, when I called Dr. Bromberg's office to get the results and find out what dose he wants him on based on those results, they said that their lab doesn't have the blood yet even and it won't be picked up from O'Fallon until 9pm tonight!! I was told last week that the Dr. would have the results by early afternoon as long as we got the draw before 10:15 when the first courier comes. To make a long story short, it's apparently a CIGNA issue. Have I mentioned lately how much I LOVE (sarcastic tone noted) that insurance company?! Bottom line: No results = No clue what dose he needs.

Cardiology Follow-Up

Some pics from Saturday. We had a picnic at the park--Yes, he can climb the blue ladder all by himself!




Today was a busy heart day! Connie went right after breakfast to have labs drawn to check his INR levels so that we would get the results in time for his appointment with Dr. Bromberg this afternoon. He was brave. I fear that next week when it is time to get them drawn again, he will not go in so willingly. He's such a smart boy I'm sure he'll recognize the place. He ate even better today than he did this weekend. He had a whole hot dog for lunch and ate a full serving of peaches. On the way to the doctor he had some peanut butter crackers and a whole sippee cup of milk/half and half! Colleen and Kelly and everyone in the office was so happy to see him looking better! Kelly and Colleen were especially impressed with him when he showed off his jumping and his iPod Touch skills. Colleen listened to him, asked lots of questions about his sleeping and eating, took BP and did an EKG. He was a little concerned about the BP check but we assured him that there would be no "owies". He even helped put the stickers on for his 12-lead EKG. He still has adhesive on his skin from all the stickers in the hospital. Oh well, what's a little more?!
Dr. Bromberg came in and commented that Connie looked a lot better than the last time he saw him. Connie showed him the "Melmo" movie he was watching on the iPod and Dr. Bromberg listened to him. He said his liver is still enlarged but was happy to hear that he's not napping more than what's normal for him. He said he wants to see us back in 10 days to look at him again and make some adjustment to the pacemaker. For now he wants to leave it alone. The best news is that he will likely take Connie off the coumadin in 2-3 weeks! He doesn't think he wants him on it the full three months that Children's had said so that sounds a lot better to us! It means less pokes, less bruises, less medicine. We're also going to alternate the doses some, taking 1mg three days a week and 2mg 4 days per week.

We're going to check him with a stethoscope a couple of times a day while he's awake and if his heart rate is fixed right at 100 bpm while he's awake, that is a sign to us that he's stuck in Atrial Flutter again and the pacer is pacing him at 100. So that's what we'll do. Please pray that this does not recur any time soon.

Video Clips from Hospitalization

Enjoy!

Make photo slide shows at www.OneTrueMedia.com

Going home!

We've been released! Will post more later when we get settled in.

Sent from my iPod

Greg Beckemeier
CandyCartons.com
(314) 488-2613
www.candycartons.com

ETA: We're getting settled. Unpacking and starting in on the mounds of laundry. Mookie and Greg took a time out to go splash in puddles and go on a rain walk. Connie didn't touch his lunch, but begged for tostitos so he had a plateful of chips and 1/2 cup of "nog nog."

He's wobbly and falls a lot, being pretty weak from 7 days in bed. We're watching the falling closely since he's on coumadin and that's not a good combination! We are making calls to set up appointments and calling pharmacies and trying to get back to normal a bit. We are ready for a week-long nap!

Thanks again for your prayers and support!

Night

Docs are getting ready to round here in a minute. I left last night around 6:30 and Greg stayed the night with him. I have gotten smart enough to realize when I've reached my limit so in order to provide the best care for Connie, I had to take a break. Plus, my little MookieRoo is missing her mommy. She and I went to Wendy's for dinner and a frosty and then home to let Belle out and go to bed. I got a shower in my own shower and even got to dry my hair this time! We got up bright and early, stopped for a donut on the way in and got here by time for morning rounds at 6:30. She and Greg are snuggling on the parent couch thingy in the room and Connie is snoozing away. He had a great night. His new little roommate is very quiet. Nary a peep out of him. He was wired again so he didn't fall asleep until 11:15. He did get a spongebath and clean sheets and pajamas so that was nice. The big news about the overnight is that his respiratory rate has been down where it was even on the Milrinone, meaning he's not showing signs of slipping back into the severe cardiomyopathy (failure) like he did last time we stopped milrinone. Dr. Checchia told me last night that they didn't anticipate him having difficulty with it this time because his rhythms are normal now, where they weren't the last time he was taken off. The "shelf life" of that drug is like 3-6 hours they say, so if we were going to see him decline and the failure worsen, we would have seen it by now.

We'll update again after we get the plan for the day.

Evening Rounds

Dr's just left his bedspace and they kind of skipped him because his little roommate is having some trouble with keeping his heart rate up all of a sudden.

Dr. Checchia did come in and say that if he does fine overnight, he'd be moved to the floor in the morning. Floor status means he might get a little more freedom to get out of bed and such. Maybe even a wagon ride would be in his future. I asked how long we should expect him to be there and he said maybe a day. He said they might even be able to be convinced to send him home in the morning and skip the step of going to the floor altogether. That's my vote, but I want to make sure he's stable and won't throw us any surprises once we're home. I'd also like to see Dr. Bromberg again before going home.

Looks like they are moving the roommate back to the CICU. He was on CICU status, just like we are, but they can keep a better eye on him and they have more room to intervene if they should need to. This might mean that there is some hope of being alone tonight and getting a better night's rest. If the poor little guys alarms weren't sounding, he was inconsolable. Connie kept saying, "Uh oh" when he would hear him start up again. Like a concerned older brother or something. It was cute. This annex business is for the birds. They need a bigger CICU if they have too many kids that are CICU status and not enough room. I don't see how putting a kid in CICU status in a room that is equipped to be a regular hospital room is in the best interest of the patient.

Settling in again

We are moved. They decided not to wait until he woke up because the other little patient our nurse had was moved earlier and she was pretty spread out trying to keep up with both of them all the way across the unit so we wheeled him quietly around to his new space. Problem was, his bed wouldn't fit. It was quite the ordeal, with four or five nurses trying to get him in the room. Of course he woke up during all of this. After some rocking he decided to be in a good mood and is now mowing on lucky charms and raisin bran (dry) while we wait on his lunch order to arrive along with a bedside table so we can keep the crumbs out of his lap and sheets! Wouldn't you know, our roommate is a teeny newborn who has been quiet all day until we arrived. It's also one more set of monitors that beep and alarm constantly. He doesn't have any parent with him. The nurse said a grandparent is here, but he must have stepped out for a bit. Poor guy. We did get the window space, for those of you who recommended it, thank you! It is quite a small room. I think it is smaller than the one he was in and that only had one kid! I think they may let me use a phone in here and possibly even eat in here so that is one bonus, I guess. The fellow on the unit said that she hasn't totally evaluated it, but at first glance, his echo from this AM looks like the LV function has improved. That's good news. He's still on milrinone and they haven't ordered it stopped just yet. The nurse said they may decide tonight on rounds when to do that. He's not getting Lasix anymore and the fellow said unless he's not peeing enough or starts getting puffy, that he won't get any. I asked the nurse if the plan from here was to get off the milrinone and see how he was 24 hours out and then go mhome and she acted like home wasn't even in the discussion yet :(

Moving again

Connie is moving to 7W. He is only moving there b/c they have more critical kids that need his bedspace. Maybe a post op kid or something. He is still going to have the same nurse and will not be considered "floor status." He will still be Cardiac Intensive Care Status and on the monitors and all. Bummer is he will be in a shared room :(

His echo is finished. He did great. Watched Max and Ruby and ate starbursts! I asked if it was a full blown one or just a quicky to check function and he said they wanted the whole one done on him since he's never had one here. There were three docs in here for it and they said he does have a unique anatomy! That's an understatement. It takes those looking at him for the first time a little while to figure out what is what in there.

I'll post again after we're all moved. They may wait until after his nap, if he ever does nap!

Rounds are Complete

The team of docs just finished rounding. Connie was awakened at 6am for his blood draw. The flabotomist (sp?) did a fabulous job. She found a vein right away in his arm, not hand where it is more painful. It took all of 30 seconds. Then they called x-ray back up to get a picture of his chest and he was just about to drift back off to sleep when they came to round on him. The plan for the day is to check his labs before restarting/deciding the coumadin dose, restarting the dig and enalapril today, coming off milrinone and watching function. He's due for an echo later this morning. Once he's off the milrinone there is no reason for him to be in this "fishbowl" (CICU) according to Dr. Van Hare, so he will likely move out to the floor later today. No timeline has been given on how long we can expect to be there.

He's watching Bob the Builder, playing an alphabet game on Greg's iPod and thinking about drifting back off to sleep.

As far as the hyperactivity we saw last night, Dr. Checchia said, "Well, we did give him an electric shock," which is rather stimulating! And Dr. Van Hare added that a lot of times the drugs they use to induce sleep for procedures for them to sleep half the day end up keeping them up half the night.

I will say, it was pretty quiet around here last night. I decided not to ask for a new nurse and it all worked out just fine. She even advocated for him a few times, once when they came for x-ray around 5 and she knew he had labs scheduled for 6 so she asked x-ray to come back later so he could sleep. Also, when I had questions about whether or not he would be getting his dig or coumadin before bed she went and got an answer right away. Our experience in Michigan was that sometimes you had to wait quite awhile for nurses to ask MD's things, so that was a nice surprise.

Yes, still up

It's 1:10am and Connie's still awake! He just had a bowel movement though, so now maybe he can settle down a bit. First he was extremely silly and wound up. Now he's quiet, but wiggly. His numbers look great on the monitors though so I'm not too worried. Maybe it's just the super-long, drug induced nap he had today. The most difficult thing is to keep him from constantly entangling himself in the wires and pulling off leads. The nurse just came in and said they are going to draw labs around 6am. He'll get a grand total of 4 1/2 hours of sleep, assuming he falls asleep anytime soon. Are you kidding me? The custodian just came in the room with a new, noisy trash bag! Do they seriously empty the trash at this time of night in occupied rooms? What are they thinking?

Rounds are prompt at 6:30 am and since he's in bed 12, he'll be the first one they discuss. Guess I better try to grab some shut eye once he dozes off.

Looking a little better

As Greg mentioned, Connie woke up peacefully--and just in time for a visit from his pediatrician who was here visiting a patient who was born a couple of days ago with TGA. He confirmed that the way I perceive the staff's perception of us is probably pretty accurate. For one, we left town for his "big surgery". This makes them think we think they are inferior. Number two, we went to St. John's initially then had to be transferred here. I just have a feeling that they are a little territorial, but that may just be me making more out of it. Dr. Davis said there probably is a bit of that going on actually. Oh well. They can get over it. I'm a little concerned though because the night nurses just came on a little while ago and Connie's nurse for the next 12 hours is one that was mentioned recently in an email from another heart mom in the area who's son just had OHS here as a nurse to avoid because of mistakes! Great. Now I have the added pressure of asking for a nursing change, which will make them like us all the more, I'm sure. I'll pray about it and since he's not super critical right now and she's not set to give him any meds or anything, I'll probably give her the benefit for a little while. Ugh. I hate this.

ConBon asked for a drink and has had some sips of chocolate milk and we ordered him a tray and he has had, you guessed it, saltine crackers! Although, he did eat most of a chocolate chip cookie as well, so that's some improvement. He also had about 8 or 10 bites of chicken noodle soup. He got all his wires untangled and even drew with a pen on some paper and his legs! He's pretty cooperative so far. Let's cross our fingers that he continues to feel better and more alert and active.

The next step is an echo in the morning. I heard Dr. Van Hale tell the rest of the team during rounds, when asked by Dr. Ghandi about the potential for ablation, say that the youngest he'd done ablation on a kid with a senning procedure was four years of age. The doctor for overnight asked him what to do if he went into flutter again and he said, "He won't. If he does, call the director of the unit. We're not starting him on amiodarone without talking first." It seems that he's a bit of an unusual case, even for here. We expected St. John's to be a bit freaked out by his anatomy, but it was funny how on the way here, the doctor that came to pick him up didn't even know what a Senning procedure was. When they were getting his history, all 17 times, they were very impressed by the information I gave them. A couple even asked if I had a medical background. I told them no, I'm a kindergarten teacher, actually. That made me feel like Supermommy!

Dad posting

Hi everyone, Dad here... I stink at writing so I'll make this short.

THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU for saying prayers for my boy!!!!!

He's been awake for 45 minutes, and he actually woke up HAPPY and PEACEFULLY. He looked right at me and said "monk" while handing me his monkey-luvee. I actually burst into tears unexpectedly. I was deathly afraid of a Michigan repeat where it took him weeks to wake up. The joy in my heart right now is indescribable.

There's still an uncertain road ahead, but I think I'll stay in the moment for now.

Mary Kathleen is staying with grandma Marybelle tonight and Celeste is at swimming lessons. I was dying to get Celeste up here to see her brother before the cardioversion but it didn't work out. If you're reading this Celeste, your little brother is doing great and will be jumping on your stomach again in no time!

Love and eternal gratitude from the Beckemeiers!!

Dad

Here's the deal

We're at Children's now. We've been kicked out while he gets his TEE. The experience here so far has gotten my irish up a notch. We're dealing with a fussy, over-tired, hungry baby and have had all the fun of saying the same thing fifty-eight times since this is a teaching hospital. Real fun. He especially enjoyed mommy being distracted and not be able to attend to him fully. Not. They have all been told of his anxiety over medical personnel. He's even a little freaked out by Greg right now. He senses Greg's worry and is very difficult to console. I finally got him to sleep a little after 3 I guess and had him laying peacefully in the bed. This was quite a feat. They come in to start the procedure and are prepping, etc. and I repeat that it would be best to get some sedation on board before doing anything to him or "going at him" with any equipment. I remind them that he is just sleeping and not sedated. I am assured that this will be the case and then sure enough, somebody orders the Respiratory therapist to shove a nasal cannula in his nose! He immediately awakens and starts getting hysterical. There was some debate about what to give him and when. One lady who I don't want to ever come near my son again kept wanting to wait and the fellow kept saying give him something. It was ridiculous. Meanwhile, his little mental issue with hospitals is exploding. They ended up having to give him three drugs before he would settle down and sleep. Greg said earlier that he was to be given a general anesthesia. That was not the case. He was given versed and fentanyl which he "laughed at" according to them. The brought a full dose of something bigger (can't remember right now) on board and he immediately de-satted down to 80! This is a kid who never goes below 97. The lady I don't like wants the cannula placed at that time to help him out and the nurse hadn't yet noticed him desatting so she said she wanted to give him a minute to get fully asleep. That's when the fellow urgently said to get the mask and mask him. Slowly he climbed back up. It was the scariest, most disorganized, lack of communication cluster I have ever witnessed. It took awhile for me to calm down.

Dr. Van Hare just came out to talk to us and we went back to see our boy. Dr. Van Hare is very close with Dr. Bromberg and has been here for 9 months. He spent 10 years at Stanford working with Dr. Hanley and is very good. Those that work with the elite guys are good. That helps. He is also an electrophysiologist so he would be involved even if he weren't the cardiologist on call, like he is this weekend. Everything went well and they did the TEE. No clots were visible. He tried to convert him like Dr. Bromberg did, also unsuccessful. Then he went ahead with the cardioversion (shock) and it took on the first try. He changed the settings on his pacer and if he goes into flutter again it should pick it up right away. There is some talk and some debate about what to watch for when we leave, but they are thinking they want to watch his LV function over the next couple of days and then hopefully go home to fully recover. Most, not all, people who are in chronic Atrial Flutter, like Connie, fully regain ventricular function. That is our hope and our goal. We also have to look at controlling the flutter and it's recurrence. Dr. Van Hare said that, while it would be difficult, he thinks Connie actually needs an ablation done. This is the procedure that is done in the cath lab where they go in the leg and find and destroy the electrical circuits that are causing the flutter. Dr. Bromberg had told us that this would be better to do when Connie was 8 or 9, that it is next to impossible to do it in very small hearts. We'll wait and see what the frequency will be for this to recur and go from there. Dr. Van Hare said that there is some promising stuff going on here at Wash U where they are using magnets to guide the catheter to where they need it, but he hasn't actually done one on a kid who's had a Senning or a Mustard. Senning is the name for part of the surgery that Connie had and the reason that he has this complication called Atrial Flutter.

So, now we are waiting for Bon Bon to wake up. He'll be groggy for awhile. Then we'll want to start backing off the milrinone soon and see how he does, keeping an eye on the function. Then we'll tweak meds and come home in a few days probably. It could take two weeks to two months (knowing Connie maybe even longer) for him to fully recover his heart function, that is, the ability his heart has to squeeze.

At Children's, they don't allow phones in the CVICU and no computer access either. One parent is allowed to stay bedside overnight and one in the parent lounge. Greg will probably go let the dog out and get some stuff and then come back tonight. We'll try to update again after Connie is awake to let you know how he's handling all this. He's been so brave. The updates and phone calls can only be made if two of us are here and one can stay with him while one goes out to update. So just know that we want to keep you all informed on the latest, but it is difficult right now. We don't want to leave him. They are very strict on visitation policies here so for now we'll have to keep everyone updated via email/phone.

Thanks for the prayers. The big picture and blessing is that God is working to heal Connie's heart. The frustration and communication problems are pretty small in comparison.

Echo

He's getting the transesophogeal echo now to check for clots, then if
all looks good they'll to the cardioversion. We're in the waiting room
and will post as soon as someone comes in to update us.

Sent from my iPod

Greg

Still waiting

Connie is now very fussy. We're praying they begin soon. On the plus
side, his room here is huge, and the anesthesia, echo, and
cardioversion will all be done in the room.

Did someone just pray for connie to settle down? He did!

Sent from my iPod

Greg Beckemeier

We've arrived at Children's

Just waiting. Conway loved looking around at all the decorations.
We're in the Cardiac ICU. Will post more as soon as we know anything.
Conway is a bit fussy, perhaps hungry. No food for him though since
he'll be going under general anesthesia prior to the cardiovert.

Sent from my iPod

Greg Beckemeier

Waiting...

For the ambulance to get here. Conway's watching Elmo. Mom gets to
ride with Conway to Children's. Woop! They're here!!

Sent from my iPod

Greg Beckemeier
CandyCartons.com
(314) 488-2613
www.candycartons.com

Going to Children's for cardioversion today

Dr. Bromberg came in and after consulting with the electrophysiologist at Children's and hearing what a rough night he had, decided to send him down for a transesophogeal echo and cardioversion today. Once his heart is in normal rhythm we'll try to get a better handle on the heart failure and go from there. He has to be NPO for 6 hours so by the time we get there and they get set up we will proceed. Conway is pretty miserable right now. Dad's getting everything packed up for the move. Mom will hopefully get to ride in the ambulance with Conway.

We're scared but also relieved to be moving forward to restoring normal heart rhythm, so keep praying!

May as well post. . .

because everyone is awake and has been since 2:15am. I finally got him to sleep last night around 11:30 and the nurse came in just after 2 saying he was not settling back down. We rocked, sang, everything. He just can't get comfortable enough or relax. I hate seeing him like this. She said yesterday his respirations were in the 20's and by the evening they were in the 40's. He kicks his legs and feet constantly. Maybe Ritalin is the drug we're missing!?(haha). He wants to sit on my lap, but moves and squirms incessantly so there's no napping for either of us. Nurse Beth needed labs done on him before her shift ended so she went ahead and applied the numbing cream at 3:30 and at 4:30 he got blood drawn. Well, it was more like 5 by the time it ended because he had to get stuck 3 TIMES! She could see the vein with the red light, just couldn't get in it. We tried to distract him with an Elmo movie, but he was still pretty upset. We snuggled a little more in the chair afterward until Elmo was over and now it's 5:40 and I've put him in bed. He looks like he has no intention of sleeping. I don't get it.

Backsliding

I left the PICU for a bit to see if me leaving the room would help him fall asleep and realize it was not time to play. When I came back in to check on him I ran into Dr. Bromberg. He asked how he was and I told him he seemed restless and told him about the two bouts of diarrhea he's had tonight and the rash spreading on his chest and trunk. I also mentioned that his breathing seems more like what he sounded like when we came to the hospital and that he's coughing and sounds a little wet when he's laying down flat. He followed me in the room and sure enough, little man wasn't asleep yet. Dr. Bromberg said he thinks he's backsliding. His feet are cold, his liver is bigger and his lungs sound wet. He's putting him back on the Milrinone tonight and going to rethink tonight about the timing for the cardioversion and make a decision. He doesn't want him on the milrinone much longer because he said it's not very good for the heart either.

So, back to square one.

Hopefully once the meds are restarted, he'll get some sleep. . .and momma too.

Say an extra prayer tonight for wisdom for Dr. Bromberg. This decision is a big one.