Karsten Michael

Here's how the boy looks at 23 weeks and 1 day pregnant. Less than 17 weeks to go! We are thankful that he is in a "head down" position as he was breech last time we checked. There is still time for him to cause trouble, but chances are, he'll stay head down until the delivery.


Covering his face

Crossing his legs just like his big brother Connie does

Definitely a BOY!

Yay for School!

I posted this on Facebook last Thursday, but forgot to put it here. Connie had school again and this time he did GREAT! He cried for the first five minutes and then he perked up and the teacher said he played and sang and followed directions, etc. When I picked him up there were no tears and he was happy! Thank you God! Of course we totally made a big deal out of the small success and got a happy meal to celebrate. Here he is enjoying it.

Baby Update

Today was the fetal echo to check on Baby Karsten's heart and make sure there are no major defects such as atresias, hypoplastic ventricles or L-transposition. Dr. Goel did the echo himself and said that everything is pointing to a perfectly healthy heart baby. Since the heart is not pumping to the lungs until after birth and since the view is more reliable on the child himself rather than through the mother's abdomen, he is going to repeat an echo on Baby Karsten sometime before he's discharged from the hospital after birth. He said that generally it wouldn't be warranted, but given Connie's history it is easily justifiable and it would certainly make us feel 100% confident that we wouldn't be surprised down the road.

After the echo I had my regular OB appt. and it was so brief. Since I had just come from the echo there was no need to even listen with the doppler. He just asked if I had any questions and then scheduled me for another appt. in 4 more weeks.

Thank you for all your prayers for this new little one. We are getting more and more excited for his arrival with each passing day!

2009 Christmas Card and More!

Three years of Miracles...

Conway's First Christmas

2nd...

2009

2009 Beckemeier Christmas Card

Vaccine and School Update

Connie had school again today, his second time going. He recognized the classroom and was not too happy, but could be coaxed easily into playing. When I left he was engaged and cheerful. When I came back and hour and a half later to pick him up, he was sitting in a chair at circle time listening to the butterfly song but not sneezing them off his head. Seemed a little leary, but wasn't crying. As soon as the song was over, he walked toward the door and cried, "Mommy". He couldn't see me, but was so sad. After class, the teacher said he'd been that way most of the time. She said that he wasn't as upset as he was the first class, so that is good. It's too bad that after one more class he's got another two week break before classes resume in Jan. What he needs more than anything right now is to go enough to actually get used to it, but I guess that's not our choice!

After such a traumatic morning, I picked him up we headed straight to the St. Peters Wal-Mart for the kids to get their second dose of the H1N1 vaccine. Poor baby! That was no reward for being brave and going to school! The lady who gave the shots was not gentle AT ALL. Even Mookie cried and she never cries for shots. Hopefully they can stay flu-free the rest of the winter.

Out of Order: Some Thanksgiving Pics

MK when she was so nauseous. Yes, we did give the Marriott their ice bucket back!

Napping on Great Uncle Doyle's bed. The farm wears a boy out!

Con and Mook napping on Cousin Abby's bed. The suburban park wears a boy out!

Mary Kathleen and Cousin Ainsley.

Visit with Santa

It was very brief as he is still petrified of the man. He did enjoy the other activities at the parents as teachers holiday event but then remembered that his monkey lovey was in the car and started whining for it. I found a package of skittles in the diaper bag that seemed to keep him content for a bit while Mookie finished her crafts. Mary Kathleen brought the parent educators to tears when Santa entered the room and she ran up to him and threw her arms around him. It was so cute!

Finally content...thanks to Skittles!

Still traumatized from being touched by Santa

Still scared

Thanksgiving ER Visit

After all the festivities were over yesterday, Greg took the kids back to the hotel for a proper bedtime as the multiple days of no napping were taking a toll. Things didn't quite go as planned, but they both did fall asleep just before 10pm. I got to the hotel shortly after and as soon as I settled into bed, Connie let out a huge barky cough and then began to wheeze. The wheezing kept up even after 15 minutes in a steamy bathroom so we called the pediatrician's exchange and they said to get him to the nearest ER. The nurse who took the call could hear him through the phone and said with his history it and the fact that we didn't have a nebulizer or any albuterol with us definitely called for a trip to the ER. Greg looked one up on the computer and found TX Presbyterian 3 miles away. We got great service and were seen right away. Dr. Grimm (a horrible name for a doctor) was very nice and diagnosed him immediately with croup when she heard the cough. The funny thing is, he isn't coughing much and has no fever, but since croup is a virus, other virus related symptoms were suddenly explained. Like the diarrhea and the tiny red spots all over his torso and neck. He got a steroid shot which lasts 72 hours, the same length of the virus, and then she debated on whether or not to give him any racimic epinepherine (sp?). She wasn't sure about giving him any epi with his heart and specifically with his history of flutter. I told her that he'd had it after both surgeries as every time he was extubated he would have stridor and required two treatments each time. When she heard that, she decided he was a candidate for it but wanted to watch him on the monitor for an hour afterward to make sure his heart rate stayed okay. The monitor was behind me but I did see it up near 170 once. It didn't last long though and quickly started dropping into a more normal range. After waiting it out an hour, he got a dose of benadryl and was discharged. He was such a good boy and fell asleep soon after we got back to the hotel around 2am. He was up at 8am demanding hashbrowns so I guess he's feeling better already!

First Day of "School"

Connie attended his first session of "Speech Group" which meets weekly for an hour an a half. It is a group of six kids between ages 2-3 and two speech therapists. They just play and have a snack and work on speech skills through playing. It's held at the same school where he'll attend preschool starting in March so we think it will be good for him to get used to the faces, the setting and being away from Mommy and Daddy. Mary Kathleen and I dropped him off and he was more than fine separating from us. A bowling set caught his eye so he was off in no time to go play with that. When I came back to pick him up, I could see through the window that he was sitting at the table with the other kids but crying very hard. Soon the teachers opened the door and let the moms in and he was very happy to see us but kept crying as if to tell me how terrible it was! We spent a few minutes with me asking him about what he had for snack and taking him around the room to let him point out things he did while he was there. He was still crying a little and trying to catch his breath. We went out for sub sandwiches and his favorite, chips, afterward and he was totally fine. During lunch I asked him if he cried today at school and he said, "uh huh." I asked him why and he said, "Mommy". I said he didn't have to miss Mommy because I will always come pick him up. We'll see how it goes in two weeks when he goes back. Next week they don't have class due to Thanksgiving so maybe he'll forget how upset he got there.

New Baby Update

We had our "big" ultrasound today and learned that our little 3/4 lb. baby is a BOY!!! That evens the family up at 3 boys and 3 girls :) The tech tried to get as good of a look as possible, but the baby was kind of lazy and kind of content to just lay there in the same, hard to view position. The high risk OB came in and took some measurements and said that all things now point to a healthy baby. All parts are proportionate and show excellent growth. Looks like the heart has four chambers and things appear to be in the right place, but he said it is too early to say for sure. I am going back in a couple weeks for a fetal echocardiogram done by a cardiologist (Dr. Bromberg's partner) and then in four weeks we see the high risk OB again just to make sure everything is still okay. He said that there is a possibility there is a small VSD (hole) there but when I asked if it was small enough that it might go away on it's own or at least not require open heart surgery he replied, "or not be there at all." That made me feel better.

Update on yesterday

When I last posted, Connie was sleeping peacefully. Wouldn't you know we just reinstated the tough love thing at night about 5 days ago and had to ruin our progress? He woke up at 4:30am and I was afraid he might still be sick or feeling ill so I sat in his chair in his room thinking he'd fall right back to sleep and I'd sneak back to my bed. 1/2 hour later, he finally shut his eyes. As soon as I tucked myself in my bed, he was crying and already out of bed! I was so exhausted I just laid with him and he fell asleep about 1/2 hour later. So he was up for a total of an hour, but didn't vomit again. Today he's acted completely normal. Since it didn't even last 24 hours, I'm assuming it was just some weird reaction to the shot he got on Thursday afternoon. Thank you for thinking of him and praying extra hard that this didn't send us down that path, the one that all heart moms know we could be back on at any time.

Also, I have to share a big milestone. Mary Kathleen scored her first soccer goal today. She kicked the tying goal in what was the closest game the Assumption Pre-K girls have had to date. It was a genuine goal too, not just one the goalie happened to let through. Once she scored, she became a totally different little player. She must have gained a great deal of confidence with that shot because she took off and went after that ball with a new sense about her. It was so fun to watch. You'd have thought she won a gold medal or something the way we carried on. Of course, all the parents do that on our team since it is so rare that we actually score!

Tonight we've made s'mores outside and told stories and read books in the tent in the backyard. The plan is for the girls and Greg to stay the night out there while Connie and I remain in the comfort of our own beds. We shall see how long they all last!

It's not flutter, but...

...Connie is not right. Conway got his H1N1 shot yesterday around 5pm. Today at about 3pm he started getting whiny and following me around and asking to be held. I asked if he wanted to snuggle and so we laid down for a while on his bed. He seemed really tired (he woke from his nap around 2:20 so not sure why he would be so tired) and his eyes kept drooping shut but he couldn't get comfortable. He coughed a few times like he might get sick to his stomach. I felt his chest and it seemed like his heart was beating rather fast so I went to grab the stethescope. His resting HR was almost 130! I just knew he was back in atrial flutter like he had been this summer so I went to get the phone to call the card before they left for the weekend and he vomited all over his bed. I checked his temp and it was 97.5 so I thought it absolutely had to be his heart. This is exactly what happens to him when he is in flutter, only this time he was paler and even more listless. Kelly told us to come in so we could interrogate the pacemaker and see if he was. He vomited again on the way to St. John's, turned white as a ghost and fell asleep. I kept waking him up thinking that if he fell asleep he'd go unconscious or something. When we got there, she did an ekg first and faxed it to Dr. Bromberg who was somewhere else doing an ablation. He read it and said it looked good but wanted the interrogation. She hooked him up and got his atrial EGM and Dr. Bromberg pulled that up from where he was and said that he was in Normal Sinus Rhythm.

So. . .that leaves us with either 1) he caught a stomach bug while at the Take Care Clinic waiting for his H1N1 shot-unlikely since everyone there was just there for the shot, no sick people waiting in line, or 2) he's having a reaction to the vaccine. What's scary to me is not that he's vomiting, but that his heart rate is so high and staying so high while resting. Kelly told us that from the people and nurses she's talked to about the vax, if someone has a reaction, it generally presents within 24 hours and lasts between 24-48 hours. She said if he's not better by Sunday to call our pediatrician.

As we left the office he seemed to be doing fine and asked for a sucker and ate it before we even got buckled in the car seat. We decided not to sit in traffic all the way back out west so we went to meet Daddy and the girls at Cece's swim practice, which was just winding up. By the time we got there, he was being a wild man and silly and acted just fine. We decided to eat something down south before coming all the way back home and he ate and drank and was silly as could be in the restaurant. He downed 1.5 glasses of chocolate milk and by the end of the meal, he looked a little green again. He made one burp that sounded like there was more behind it so we promptly left the restaurant and headed home. I covered him with bibs and towels hoping to avoid the inevitable, disgusting mess that was bound to occur on the way. Instead of getting sick, he fell asleep and has been sleeping ever since. Please say a prayer that whatever was going on with him is over and on it's way out the door! We are so thankful it wasn't his heart and are just hoping that his heart rate can stay down. I checked it a minute ago and it was around 100 so that sounds a lot better to me!

Happy Halloween!

Connie was a very good trick or treater this year. We brought the wagon, but he did quite a bit of walking himself, which was both good for him and for us to see. He was a dragon, but he didn't care for the wings so he looked more like a dinosaur. Oh well. For some reason, he thought it was okay to reach into the candy bowls himself and to try to go into people's houses. After a few houses, he learned to just hold out his monster candy bucket-which became too heavy for him rather quickly. He told everyone "Happy Halloween" but it came out more like "Happyween." He also would tell everyone he was a dragon and roar in a scary voice. It made everyone laugh. His sisters got candy from the firefighters and saw the big truck, but he was already in his pajamas so he missed it. I got to see lots of my former students and parents, including one who moved away but still comes back to the old neighborhood to trick or treat. When we got back to Grandma and Grandpa's house, he loaded up on candy and then was completely delerious! He was so tired (up about an hour after bedtime) and yet so full of sugar that he was literally running in circles but almost falling constantly. It was funny to watch. He fell asleep on the way home and slept all night long in his big boy bed.
The kids with their cousins

A close-up of the scary dragon

Cece (Vampire), Mary Kathleen (Ladybug Ballerina) and Connie (Dragon)

Connie digging into his haul

Pumpkin Patch

We headed to the pumpkin patch today after we picked up Mary Kathleen from preschool. We figured the kids could handle skipping naps one time. And, the bonus to going on a weekday during naptime meant we had no crowds with which to contend or share germs!
Here are some of cute pics from the day. Enjoy!
Connie in the corn box

MK buried in the corn box

My little bats

On the pony express

Flu Update and More

Thankfully, everyone in the house was able to remain flu- and strep-free thanks to Tamiflu, constant sanitizing and keeping MK restricted to her room for five straight days.

Now for the badish news. Conway's activity level has decreased a bit, he's not eating as much, his sleep is not as restful and his little neck vein was pulsating yesterday. Then last night he vomited out of the blue. We did a pacer check yesterday which looked fine, but we've been fooled by those before so Dr. Bromberg offered to meet us at the office this morning to check him himself and help us be reassured that he was not in atrial flutter. Good news is he is not. Bad news is that his liver is bigger and with the other changes, it indicates that he's not handling the changes we made at the last visit.

Due to this, we will go back to the Lasix twice a day. Part of me feels so defeated that we are moving backward in the recovery process, but then the other part of me is so relieved that this is not flutter and we don't have to reintroduce that nasty Amiodarone. It's amazing how quickly you can be thrust back into the reality of CHD. Dr. Bromberg said that we might have been a little ahead of ourselves because he really looked so good last time he saw him and he does think he's not as good now. Hopefully this is the change he needs to get back on the speedy recovery track. This isn't a life sentence to 2X/day lasix, we can still wean him down eventually. We'll just take it a little slower from here on out. He said to call him in a week to let him know if he's improved and if not, then he'll adjust his pacer settings to see if that helps.

Prayers are appreciated as always. Focus them on God using the increased diuretic to help Connie's heart failure symptoms improve so that he can bounce right back to the path he was on.

Preventative Measures

Despite our best efforts to stay well (not frequenting public or crowded places, good hand washing, pulling MK out of preschool, etc.) it seems that the dreaded swine flu has hit our home. Greg woke yesterday with a fever, cough and headache. He was ordered to be tested for flu but the test came back negative. Then about 5am Mookie started complaining about headache, cough, sore throat and had a low grade fever. She also had some 3 loose stools before 10am. She visited the pediatrician who swabbed her as well and her tests came back positive for BOTH the H1N1 flu and strep throat! Unbelievable. Her doctor said that if 10 people actually have the flu, only 6 will test positive on the rapid test, meaning Greg for sure has it too. His doctor confirmed this and prescribed Tamiflu immediately. MK is going on Tamiflu and an antibiotic for the strep. Connie and I are to start the preventative dose of Tamiflu since we are at a higher risk of complications from the flu (being a heart patient and me being pregnant). Connie's cardiologist ok'd it and also gave us a bit of good news. Last week he had blood drawn to check his BNP level, the one that measures heart failure. Remember this summer how he was in the 7000-8000 range (extremely elevated, meaning severe heart failure)? His number is now only 1800!!! That is much improved. While it is still elevated and we don't know exactly what it means in children, we do know it is a lot better than a couple of months ago so we'll take it. If the cardiologist were to check every complex chd kid in his office, he might find a similar number. We also know that his liver is a totally better size indicating no signs of heart failure! Now if we can just keep him from getting the flu... I asked the pediatrician about taking him to my parent's house or something and he said it was too late anyway. Just separate them the best we can and get him on the tamiflu. So, that's what we'll do. We'd appreciate some prayers for speedy recoveries for both Greg and Mookie and that the rest of us can avoid this plague!

Cardio Visit

Today Connie went for his six week post op check-up. Really I think it's been seven exactly, but who's counting?! We started things off with bp and weight and all that stuff. He's gained two whole pounds in the last four weeks!!! We are so excited. Dr. Bromberg says that weight gain and appetite are a huge tell-tale sign of heart function and he predicted at our last visit that we'd see him packing on the pounds in no time. Sure enough, he was right. Isnt' he always?! Now his growth chart looks much better. It's finally trending upward again! Next stop was his pacer check. No interesting activity to report since the last visit (this is a good thing) and with that news, he feels comfortable adjusting the settings so that he'll go from his atrium being paced approx. 40% of the time to just 10% of the time. That should save some battery life too. Right now it is saying 5 years left with a range of 4.5-6 years, but Dr. Bromberg says now that he's adjusted it, it will be even longer. That's great news too! Then we went downstairs for chest x-ray and bloodwork. He cried for both, but the stickers he got in return were a huge hit (Diego, a scary halloween monster and Pooh Bear). Then it was back upstairs to talk about the x-ray and make a plan. No echo today as his echo 4 weeks ago was pleasing. X-ray shows marked improvement over 4 weeks ago so we're decreasing his lasix to 1X/day instead of twice. If, in 8 weeks, we notice no change with him (as in he's not laboring to breathe or clammy or swollen), we'll stop it altogether. We don't go back to the cardiologist for 4 whole months! Can you believe that the child who was in heart failure all summer and almost listed for a transplant now has a four month reprieve? Unbelievable. He is true testament to the power of prayer and what our Lord Jesus can do when we call out to Him. Dr. Bromberg sees no reason why he shouldn't start preschool in March like we're planning (we're a little freaked out about the germiness of it all) and thinks taking him to an indoor pool a lot this winter would be a good way to keep him active and burning energy. He also gave the okay for the H1N1 vaccine in a couple of weeks (if we can find one, hopefully!) and can't wait to see pictures of him in his dragon halloween costume. That's it for now. Keep tucking our little man in your daily prayers if you can. It's working!

Got the Shot

Connie and Mookie went to the pediatrician today for their flu shots. MK went first so she could show Connie how to be brave. She was very brave. No tears. He cried just watching her get hers! He kept saying, "Done, done." He got over it quickly once he was offered a popscicle. Then the doctor brought in another doctor from Children's who was working/studying with him so she could listen to his rather unique heart. I told him that Dr. Bromberg says it isn't nearly "as interesting" since the surgery.

Next up on the list is Dr. Bromberg for a cardiology check up on Thursday. We're taking the pic below to him along with some yummy treats for the office staff. Notice the words on his pajama top.

3rd Annual Averi Budde Foundation Benefit for Children's Hospital

Today we went to Blue Springs Ranch in Bourbon to a fundraiser for Children's Hospital's CICU and 7W. It was in honor of Averi Budde, a "heart friend" of Connie. She and her twin sister were there along with four or five other heart families we've met through the St. Louis support group, Heart 2 Heart. They had a lot to do and I'm pretty sure we did just about all of it! The kids had a blast. I think Mary Kathleen's favorite thing was the bounce houses and Connie loved the barrel rides. He called it a choo choo train. Mook rode a horse and even up in a helicopter! Can you believe it? After watching us take off, Connie got a little upset thinking I was disappearing. The food was great and so were the friends! Thanks Isom's and Budde's! What a wonderful event!

Mookie in a covered wagon

Connie and his heart friend Maggie

Finally not afraid of bounce houses!

In a barrel ride with Daddy

Getting Better and Better

Connie keeps making noticable improvements almost daily! He's now telling us when his cup is "empty" instead of just asking for "more". On the steps of the playground equipment, he's learned to use the railing to go up instead of crawling. He still crawls about 40% of the time, but it is progress! I even notice when he sits down at the top of the slide, he's doing so in a more fluid motion now where before he sat down way back and scooted up to the slide. He's figured out how to bowl and play golf on the Wii and can use the remote without assistance! He's such a little smarty :) He's running more and doing that thing toddlers do where they keep repeating themselves until you acknowledge them! Annoying, but still progress. I still marvel that it has been less than five weeks since his surgery and he's already feeling and developing so much better. God is so good!

No Cavities

Connie's visit to the dentist went well. She said his little mouth is a bit overcrowded and we need to floss him already since his teeth are touching in the front. She told us that because of his history, his permanent teeth are likely to be less than perfect. She said that lots of times with kids who have had surgery or trauma as a young baby, they don't develop the right amount of enamel and are more cavity prone than most teeth. He may need to be a person that sees the dentist more than twice a year. We won't worry about that yet. We were also told once that he'd be cortically blind and he sees just fine so we'll continue to pray for health and expect that that is what God will give him. He loved the waiting room. It was decorated like a train station and had a little loft built in. He kept popping his head in the windows and saying, "Boo!"
Here's a new pic of our boy playing with his train table (thanks Amy!)...

. . .with his new train shirt!

New Baby Beckemeier is due April 13, 2010!

Just Gotta Brag

Connie's speech is improving by leaps and bounds! Today he said several PHRASES! Mookie had the iPod and he wanted it so he said, "I wanit" (I want it.). I had been telling him it was Mookie's turn and he'd get a turn later and when we got home he started toward the front door and then turned around and reached out with both hands and said, "My toon" (My turn.). He has a little string of lights in his room of cowboy hats and we turned them on for the first time today but unplugged them later and tonight he asked to "Pug it" (Plug it). This is so exciting!

Tomorrow he's going to the dentist, but just for a look. He's not taking any antibiotics before hand because they aren't going to do anything in his mouth but take a look, count teeth, etc. No cleaning or scraping or anything that might make his gums bleed. He's going to get his flu shot soon, but we'll wait until after he's six weeks post-op for that. Hopefully an H1N1 shot will be available for him too. His cardiologist wants him to have it.

Other than that, not much is new around here. He's been, according to Greg, more active than he's been his entire life. He spends his days standing at the train table, going up and down the stairs, sliding and swinging at the playground with Mary Kathleen and doing everything in his power to aggravate her when she's trying to do anything that little brothers can possibly mess up. She's trying to learn to "ignore" but if she's anything like her mommy, that's a lesson she'll never "get".

Things are Getting Better

Some of you may know that since the first hospitalization of the year in May, Connie has, in a lot of respects, gone from an independent toddler to a whiny, needy, clingy baby. Of course, the trauma of heart failure and being in and out of the hospital played a large part in that, I'm sure. But now that we have been told that his heart is looking better than ever we'd like him to get back to himself so he can grow and develop. This week he has made huge strides in the eating department. He hardly ever asks for "help" anymore when eating and is feeding himself like a champ. He has kind of figured out that if he wants it in his mouth, he's got to be the one to put it there! He's also eating more at one meal instead of snacking on little portions all day long. Again, a lot of that was probably due to his heart and the lack of blood flow to his digestive tract, but it was getting crazy there right before surgery. Then, yesterday we had probably the best new development. He fell asleep on his own for both his nap and for bedtime! I was so excited for me and so proud of him at the same time! At naptime, he was overly silly and wouldn't settle down so I told him I was not going to lay with him if he was just going to play. I got up and left and surprisingly, he did not cry! He didn't go right to sleep, but after he did fall asleep, I noticed he had found some books to look at from the night stand so I guess that's what kept him busy for a bit. Then at bedtime, I told him how proud I was of him for taking his nap like a big boy and after reading stories and praying, I told him I'd leave the bathroom light on for him and I was going to be right out in the family room doing laundry, etc. He said, "Tay" (okay) and let me kiss him and tuck him in. It didn't take him long at all to fall asleep! I hope this continues because it's so nice to have some time in the evenings again! I got so much done and didn't have to wake up to a mess and a handful of unfinished chores. Please pray that this trend toward some healthy independece continues and our "big boy" keeps on feeling better and better.

Post Op Visit

Connie saw Dr. Bromberg this morning and we are grinning from ear to ear. Dr. Bromberg was practically giddy with the improvement he sees and hears. His overall clinical presentation, his echo and parent report are all greatly improved. He can watch the echos from his office and he came in before it was even over saying, "This looks a LOT better!" He is a bit stunned at how insignificant the aortic insufficiency is now given the fact that the aortic valve wasn't touched. I told him that we believed it was God and he nodded his head as if to say that he certainly didn't have a better explanation himself! We had noticed a bit of improvement in Connie's symptoms before we left for Michigan and they confirmed in the cath lab that first Monday that his AI and LV looked "better than expected." We had been so fearful that he would be in such bad shape before the surgery that it would be nearly impossible for him to withstand such a big operation. We know in our hearts that God gave his heart a little boost right before surgery so that he would be strong enough to tolerate all they did and to recover with lightning speed! We are keeping his meds the same for now, and in a month will decrease the lasix in half. He said that he sees a day (but I'm not allowed to hold him to it) when Connie will no longer be on Enalapril (blood pressure med). The whole office seemed genuinely thrilled with our outcome. We go back in a month. He said that generally what you see six weeks post-op is pretty much what you can expect long-term, but he is very hopeful that since he's already seen so much improvement so soon (only two weeks out), that we have a great chance of Connie pretty much being a lot healthier from here on out. He thinks his growth will start to take off now and thinks that every day we'll see him getting stronger and more active. We aren't "out of the woods" yet on the atrial flutter. Time will tell on that one. He said that if he goes six months without any episodes of atrial flutter after being off the amiodarone, he'll be more inclined to relax a little about that complication. We have been thinking Connie was doing great, and now we have the tests to prove it! Thank you all for your prayers and thank you God for the blessings you have given us! We have come to always expect complications and trials and it's been so wonderful to have the outcome we hoped for, to have had a smooth experience. Dr. Bromberg said that Connie has had a pretty traumatic five months and is so excited for him to have the opportunity to finally feel good and be a "normal boy."

Update on Infection

We held out on going to the ER for fear of what we might sit next to in the waiting room. His other two chest tube sites also got red and sore looking, but we kept up with applying betadine and triple antibiotic ointment. He was due to get the stitches out at 9am this morning anyway at the pediatrician's office, so that's what we did. Dr. Davis was sure glad to see Connie home after such a short hospitalization. He said that he thought they looked inflammed, but said that is a normal reaction to those stitches. He removed them and gave us a script for Bactriban, which he said is better than neosporin. We filled it and will apply it three times a day to each site until they are healed. Next up. . .Dr. Bromberg on Thursday at 12:30. Thanks for praying. We are kind of holding our breath for Thursday to "make sure" that he's doing as well as we think he's doing.

Infection

Connie's left chest tube site is red and swollen and yucky looking. We called the cardiologist's exchange and Dr. Bruns (on call) said to try to treat it first with betadine and neosporin and cover it with a large bandage. If it doesn't improve, we will have to take him into the ER. Ugh. That's the last place we want to be with him right now where who knows what all he will come down with after being there plus the fact we'll have to wait five hours just to have one stitch taken out. What we're saying is we could use some prayers that his site gets to looking better so we can avoid the ER.

HOME!

What a day! We are all home safe and sound and made the trip in a little over 8 hours. The nurse practitioner asked me before lunch what our travel plans were and I told her we had a long drive. She asked if we'd like to get an early start driving tomorrow am, meaning getting discharged this afternoon (Weds.). I said that'd be great. Of course, he still had to get interrogated and get a chest x-ray, do all the paperwork, etc. We thought about getting a good night's sleep and heading out in the morning but we both got the itch to get home as soon as possible so we took off about 4:50pm eastern time. Greg drove the whole way.

Some exciting news: Brandon Inge, the third baseman for the Detroit Tigers, was at the hospital today for a special dedication ceremony naming today "Inge Day" there because of all the time and money he's given to the hospital and patients. The Tiger's mascot, Paws, was also on hand. We didn't wait in line for autographs, but we did get Connie's pic with the tiger upstairs as he visited kids in their rooms and delivered a ball park style lunch of hot dogs, nachos, frozen lemonade and caramel corn. I'll post it when I unpack the camera!!

Discharge Status: The results of the discharge testing show that Connie's LV heart function has improved since immediately post-op and the cardiologist today felt that the one wall that is not squeezing as hard as it should should continue to improve now that the mitral regurgitation is mild. The little issue we had with his atrial lead means that his heart is now requiring more battery power from his pacemaker to generate an atrial beat, meaning the pacer is now calculated to last 4.5 more years instead of the 6 years it was on track to last (will have to be replaced sooner). There is a chance that as his heart heals from the trauma of surgery, the power can be turned down some and save some of the battery life. Time and Dr. Bromberg will tell. His post-op meds include Enalapril for blood pressure, lasix for fluid build up (we expect he'll be taken off this in a bit), synthroid for thyroid (we expect he'll also be taken off this since it was to treat a problem caused by another heart med he is no longer on). He's been given a prescription of oxycodone for pain and is taking tylenol and ibuprofen. He's doing great and is so excited to be home finally!

Lord,
We are so blessed to have hundreds of people lifting Connie up to you in prayer and we are incredibly grateful for their love and support. Please continue to bless his recovery at home. Thank you for such a smooth surgery and recovery. This is such new territory for us to finally be on this side of the fence, the ones who go home quickly. Please watch over all the little children Connie left behind who are still recovering or about to have surgery. Guide their medical teams and parents and give the children peace and comfort. In Jesus' precious name, Amen.

Chest x-Ray at 2pm then hopefully, discharge

Echo looks better. Atrial battery turned up on pacemaker. Posting from iPod so keeping it short. We're looking at coming home tomorrow!!

Tubes Out

Connie got his chest tubes out a little after 8:30 this am. I don' think the versed really kicked in until afterward, but oh well. It was pretty quick. He also got his pacer wires out and is scheduled to be in the echo lab like five minutes ago. He's pretty wobbly after the sedation so we'll ride down together in a wheelchair. His prescriptions have been called down to the pharmacy so now it's just a matter of waiting to see how is x-ray looks tomorrow and getting his pacer interrogated before we can bust out of here.

Typical Toddler Stuff and then some

Connie didn't have any appetite this morning or at lunch. Greg and I started to worry, thinking that something might be going on with his heart. The appetite has been a tell tale sign all summer. After his nap, he ate two bags of lay's potato chips and most of a cereal bar. Now he's finishing up a hot dog with the bun and some chocolate milk. Guess he's just being picky!

We saw Dr. Bradley (EP) while we were in the playroom and he said Connie needs to be interrogated again tomorrow since they made some changes to his pacer. He said that his atrial lead "isn't as good" as it was when we came in. Sometimes surgery can do that. I asked if that meant we had to have another surgery to replace the lead and he said he isn't sure yet. He just wants to interrogate it first and then maybe we can just wait and see.

We ran into Dr. Bove in the hall on the way to the Med Inn and he asked if Connie has had his echo yet. I said no, that it was scheduled for tomorrow. I said, I'll be interested to see what's going on with that left ventricle. He said, "You and me both."

Please pray that Connie's atrial lead to his pacemaker is secure and working efficiently and does not need to be replaced. Replacing it would require opening the chest again. Also pray that the tubes have stopped draining enough to be pulled tomorrow and we can proceed with getting home.

Just Kidding

So, the nurse seemed surprised that they were planning on pulling tubes today so I asked that they double check his drainage numbers because I don't want to withhold food for him until 2pm for them to then decide they are going to leave them in another day. The cardiologist came in and said that he was close to borderline, but she would be conservative and leave them in. They don't like for his output to be more than his weight and his weight is 12.6kg and one tube had drainage of 22, 20, 16 and other numbers greater than his weight. The last thing we want is to pull the tubes today and then have to have more tubes placed tomorrow. So, today will be a play and wait day. Status quo, if you will. If the EP people are happy, he can come off the monitors and even go off the floor and maybe even outside. Too bad I didn't bring him any winter clothes! It's freezing up here. It even got into the 30's overnight! So, we will be patient. We are also increasing his enalpril up to 2ml and keeping him on synthroid (the thyroid med) until he gets home. They want Dr. Bromberg to take him off and then check his levels. Since he's been getting it here already, checking the levels now won't exactly give us a true number.

Even Earlier Departure?

Greg stayed with ConBon last night and called early this morning to tell me that they already decided that they are pulling both remaining chest tubes today. That means that it is probable that as long as his echo and x-ray on Wednesday look good, they will send us home!

More Lines Out

Finishing a lap

Showing off my walking to Dr. Bove

My new name sign in my room

Such a happy boy. His nurse wants to trade in her son and keep Connie!

Connie got rid of his last IV. It was his central line in his groin and it wasn't drawing back and he doesn't need it for the morphine anymore so they removed that. He has switched to oxycodone and tylenol and ibubropfen. Seems to be working fine. He wanted to get out of bed after dinner and walked all the way over to Pod A where he saw Dr. Bove. Then he played in the play room. After that we went back to his room to change his first "dirty" diaper since before surgery!!!! I'm sure he is quite relieved now.

Play Time

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Up and At 'Em

Making an important call

Coloring with the Child Life Specialist

Playing with Daddy

"rain" (train)

Connie walked from his room to the playroom on 5East. He played at the train table for quite awhile and then in the phone booth and telephone. After that, he walked a whole lap around the floor and impressed everyone during rounds. He's probably going to be sore after all that so we are going to start alternating ibuprofen and tylenol. His nurse, Carol, said he did drain quite a bit during that time out of bed. That's the goal!!! Still no word on getting off the morphine and his morning meds are almost two hours late. Gotta love nursing inservices!

Here Comes Our Boy

The Connie that we knew and love is definitely making a comeback! He woke up at 2:30 this morning (thanks to his neighbor) and was doing his tricks like fake sneezing and trying to be funny. He would poke himself in the head and then laugh. He almost got a little "wild".

I asked the nurse about turning off the morphine drip (since that was the plan anyway, and since he seems more ready to get up and about, it needs to get out of his system) and she said she won't. She doesn't have orders so she won't do it. But, she will give lasix at 6am when he just had a dose at 9pm and still hasn't stopped having soaker diapers! I told her I was going to hold that 6am dose for two reasons. One is I am not getting him up at 6am to give him meds everyday once we are home. I think it is about time they get these drugs on a schedule that makes sense. The other is that less than 12 hours ago he had it and has reacted quite strongly to it if he continues to pee and pee and pee. I want to ask the NP or the docs during rounds about either decreasing the dose or going to once a day. At home, when his heart wasnt' working as well as it is now, he only took it once a day and it was a smaller dose than what he's on here. We'll figure it out, it just seems insane to me that when you get this close to home that they don't start timing things better.

Two more lines down

A nurse practitioner took out the two iv's in Connie's feet earlier this evening. One was clogged and we did both in anticipation that he might go for a walk later. Still being on a morphine drip seems to make him not such a great candidate for walking himself and he didn't exactly jump out of bed when I mentioned it so we'll try it tomorrow after the morphine is turned off. He's sleeping now and thankfully after 25 solid minutes of screaming, the six month old next to us was wheeled out in a stroller to be watched at the nurses station. Hopefully they keep her out there all night ;) I know the mom has to go pick up her other kids and arrange care for them and they live three hours away, but she said the dad was laid off so not exactly sure why he can't stay to comfort her. They are the only ones who can get her back to sleep in her crib!

Maybe a walk later?

Connie had another whole carton of chocolate milk, a yogurt tube, a whole serving of peaches, 1/2 bag of chips and some cookie bites. We're getting healthier bit by bit. He got quite itchy and so got some more benadryl. We're hoping when that wears off he can get up and go for a stroller ride. The nurse said they want him to try to walk to the door. Not sure about that one, but I guess we'll try. He still has two IV's in his feet and one is not flushing anymore so they need to take that out first anyway. I have no idea how they expect him to walk with a line in his foot, but they've done this more than me, right? Tomorrow he'll probably switch over to oral pain meds of oxycodone and tylenol.

Chest Tube Out

That darn morphine makes me so itchy

All dressed, sitting up and eating like a big boy after tube removal

Resting in his new room

Connie got a PRN dose of morphine and 1/2 dose of versed for the chest tube removal. He had been sleeping but woke up. He actually seemed pretty okay with it and laid nice and still. His stitches didn't close the wound all the way, but got it close. That meant they had to use a special dressing that has to stay on 24-48 hours. The plan from here is to eat, walk, lose the other two tubes, make sure pain is under control, and get all the discharge testing. The way it usually works is they pull the other tubes (whenever they stop draining, who knows when that will be) and then the next day they echo, do a chest x-ray and do a pacemaker interrogation. As long as everything looks good after that and his pain is well controlled without IV meds, he'll be discharged. He's going home on Enalapril, Lasix and the thyroid med he was taking before. He'll come off the lasix probably in a few weeks and depending on how his echo looks and how the minimal the leaking is, he may be able to just outgrow his dose of enalapril. I'm still unsure if he'll go home on amiodarone. Dr. Bradley had said that he does send some kids hom on it for a few months, but they aren't giving it to him so far. The only reason for the thyroid med was because of what the amio was doing to his thyroid, so I'm not sure why he still needs that, but that's a question for closer to discharge or when we get home. After his tube was pulled, he ate a whole bowl of cinnamon toast crunch and drank 1/2 carton of chocolate milk. The nurse couldn't believe he wasn't passed out from the sedation they gave. Every single time he wakes up he asks to eat. I think it's because he's afraid that we're going to withhold at some point since he's been NPO so often lately. Now he's snoozing and we're doing some laundry.

All Moved

Connie's now in his new room and they are prepping to remove one chest tube. Greg was with him for the move while I grabbed a bite and when I met them in the new room, I was so disheartened to find that his new roommate is a little infant, the same infant that cried all night on Wednesday night when he was on the floor after his cath. We could hear the poor baby three doors down even with our door closed. As bummed as I am, I guess it is a small price to pay for the miraculous recovery we've had to this point. I just wish a parent would stay with the child to be able to comfort her.

Check. . .Check. . .Check. . .

Everything that was planned for today is now finished other than the chest tube removal and move (planned for 11am). He's been graduated to a big boy bed out of the crib and is fighting sleep with everything in his power. He's a little mad at us b/c he keeps asking to eat and we can't let him until after his chest tube removal, but other than that he's in pretty good spirits. He required no PRN's of pain meds overnight, not even tylenol! He's getting his increased dose of benadryl now so hopefully the itching will subside. If he stays on this pace, he'll get off the morphine completely by tomorrow and then just be on tylenol. After that, the only thing keeping him here will be the drainage from the chest tubes. It could be a few days or a week, every kid is different. I told the nurses it will be so weird having to actually have instructions on how to care for his incisions at home since last time we were here, his scars were completely healed long before we saw St. Louis again. Dr. Bove came in and seemed impressed with our progress. He said he'll stop by tomorrow so we can get a pic of him and ConBon.

Ready for the Floor

Connie is really flying now! They just rounded and the plan is to get rid of one mediastinal chest tube, lose the arterial line, lose the foley catheter in his bladder and stop the milrinone. They are going down on the morphine to 10 and doubling his benadryl. He's now NPO until noon for his chest tube removal.
He had a great night and is now going to move to the floor later today as long as he tolerates all of these changes.

Itchy and Getting Sore, But Moving Forward

Connie is still itching and scratching, despite the benadryl. Good news is he's not needed anything other than tylenol and his morphine drip is down to 20. Tomorrow it will go to 10. Hopefully getting less of it will improve the itching. He got a bath and even got his hair washed!!!! and after that I got to hold him. He fell sound asleep and we went to move him back to bed. That woke him up and all the jostling around got him pretty sore around his chest tubes. He laid back down and avoided needing any PRN IV morphine. He's since gotten up once to eat a few more bites and drink a few sips. He's getting sleepy again and we're hoping for a restful night since it will probably be our last night in the ICU.

Video of Progress!

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Still Doing Great

Connie has had a whole carton of chocolate milk, over 150cc's of orange juice and several saltines. He fell asleep waiting on his food from "room service". His biggest issue today has been an itchy face. He's been sitting up to eat and drink and been very responsive to our requests like asking if we can give his monkey a kiss. He's enjoying watching Max and Ruby and Wall-E in between napping. We'll start weaning the morphine drip this afternoon after that dex wears off completely so we can see what his baseline is for pain. He just got his benadryl and is snoozing again. It's so nice to have him back!

Great Night

Connie had a great night. He settled down with one dose of Ativan and had nothing after that. He's now on room air as he d/c'd the nasal cannula himself! The plan for today is to go down on his morphine drip, get off the dex, decrease lasix to Q12 from Q6 b/c he's putting out more than what his going in, and watch his crit. He's a little borderline, so if he needs volume, it will probably be blood. They want to get him eating today and they are splitting the mediastinal chest tubes so that they can tell if either one has slowed down enough to come out. That decision will probably be made tomorrow. They're keeping the arterial line in for today, but I will still be able to hold him. He's been such a good boy. Greg stayed with him through the night and when he came back to the room he said that Connie did some cute things but I was so tired I can't remember what they were. I'll ask him later after he naps.
One thing they are watching are some arrhythmias. I'm not sure what exactly, b/c it was during the night, but he's having extra atrial beats, and quite frequently. The night nurse felt it might be due to the way his pacer was programmed in the OR, but on rounds they discounted that and said it was fine and the ventricle was sensing the beat and responding appropriately or something to that effect.

Still holding his own

No More ET tube!

Still intubated and a little puffier

With Grandma Marybelle

With Uncle Geoff

I love Daddy

Connie's had more blood gases and they still look great, despite a few incidents and being pretty uncomfortable. He got suctioned and was not happy with that and dropped his sats and pressure and RR and HR went up. This lasted a few minutes before slowly creeping back up. The nurse says we're no where near reintubating yet so not to get too alarmed. He's needed a second dose of the breathing treatment for stridor and some ativan b/c he doesn't seem in pain, but is definitely quite anxious and more aware of his unusual surroundings. He is asking for his "pod" (iPod), to eat, for help (which means he wants help down off the bed) and saying and signing "all done". He also asked for more when the first episode of Max and Ruby ended. He was definitely paying attention, even though his eyes were closed.