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.