The Repps Blog

Happy Valentine’s Day from Appleton, WI. Yes, we are still here. The house has been on the market for 4 months. It has been shown about 24 times. No offer yet. We currently have about 4 families that have thier house for sale in hopes to buy ours. Things are moving in MN and the houses that we liked are now SOLD. We can’t wait to reunite as a Family again under one roof.

Karver asked me the other day if I had a penny for the wishing pond at the hospital. I said “no sorry, I don’t.” We sat there looking in the pond and looking at all the money on the bottom of the pond. He said “Mom, If you had a penny- I would make the best wish ever.” I said “oh yeah- what would that be”. He said “I would wish that someone would buy our house, so we could move to MN and be a family again”. Talk about heart breaking! Out of the mouth of a 4 year old!

Valentine’s Day used to be just a day where we would hand out “messages of Love” or where the kids would hand out little messages to their friends at school. I never really gave too much thought about Valentine’s Day until I had two boys both with broken hearts. Now the entire week, Feb 7th-14th is busy and is Congenitial Heart Defect Awareness Week- with the 14th being a NATIONAL CHD day! This week is full of events to bring awareness of our heart heros, both earthly angels and heavenly angels. It is a week full of emotions, full of heartache, full of HOPE, full of memories, full of celebration. Valentine’s Day will never be the same for our family!

I wanted to share a Valentine Book with all of you- that I will be sharing with my boys on Valentine’s Day. It says it perfectly!!

“Love From my Heart…. to snuggly, cuddly little boys”

If you weren’t my litle boy, There’d be a hole in the world! A piece would be gone! We just couldn’t go on! The world wouldn’t work without you!

For God gave you to me, You’re special you see! There’s no hole in my heart, you filled up that part!
Your the best thing in life, my little sweetheart! And I love you, with my WHOLE heart!

Happy Valentines Day to two of the bravest, cutest and kindest boys I know. You are my world, you own my heart and I am lucky to your mother.
~Jennifer

Family and Friends,

We wanted to share some BIG news with ALL of you before you heard it from anyone else. Kraig was offered a great opportunity with Target Corporation in Minneapolis MN. We have spent the last 2 weeks; full of emotions, anxieties and lots of decisions. After a lot of tears; and I mean a lot of tears- we have decided that it is in the best interest of our family to make the move. Our house will be on the Market tonight and a sign will be placed in the front yard tomorrow. Kraig gave his resignation Monday and starts his new job on Oct 24th. I am so proud of Kraig and his accomplishment.

Even though this is a great career opportunity, all of you, our family and friends, made it VERY hard for us to leave. We love each and every one of you and appreciate all the support that you have given us over the years. We will ALWAYS cherish our friendship and don’t plan on giving it up, EVER! Minneapolis is only 4 hours away so we expect to be back in the area often and our new home will always be open to EVERY ONE OF YOU.

I will stay here with the boys until the house sells and Kraig will be traveling back and forth.

With Many Tears, we write this message. We will NEVER say Good Bye- but See you Later!

Jennifer~

To see the video click on the link below.

The Repp Boys on the News!

Our boys are truely a sign of HOPE! Although, each heart is unique; once a Heart Warrior always a Heart Warrior. All these Heart kids are truely Heart Heros! I am so LUCKY to be their Mom! They have taught me way more than I have taught them!! Thanks Karver and Konner for sharing your journey to HELP other Heart families.

Today marked the 4 week date from when Konner endured his 3rd open heart surgery. This week was the first weekI thought there might be chance for us to go home…. I had everything blocked off my calendar for a whole additional month. But nope Konner went home in a short 5 days. There are several kiddos still in the hospital with one or many of the possible complications that this heart surgery yields. I thank God every night for placing a “healing” hand on Konner and sparring us some of these awful complications that so many families are facing.

So how is Konner today? He is doing really well. Despite the fact that his arms look like pin cushions and his arms are all black and blue from the multiple week blood draws to check his INR- he looks really good. Konner is still on a LARGE amount of blood thinner and keeping his INR at the level that he wants- is tricky and requires a lot of checking. It would not be sooo bad to get “one poke” two times a week….. but this little boy gets 3-4 pokes for every blood draw. (Darn Veins)! Today was one of those days- we go in with the “Magic Numbing cream” all over his arms- as well as Hot/Moist clothes wrapped in plastic shopping bags all over his arms- Chanting “Only Poke Today”….. and we come out with 4 bandaids all over his arms- chanting “no more pokes for me” “I am going home- no more pokes for me”. The tune of this Chant is to the Potty Power song- “No more diapers for me”. Believe or not- this is all Konner that has come up with this song. There is one gentlemen (must be new in the lab- he only gets to Hold); that I think wants to cry everytime he sees Konner. I swear I have to ask him if he needs a kleenex after we are all done. We have to go back to Madison on Wednesday for a complete check up- and hoping that we get a thumbs up and “looking good”.

So is Konner back to “normal”? Close. Konner swings on a swing, he runs around, he climbs up the slide and slides down. He swings on his chest on the swing and today slide down the slide on his tummy as well. He is very cautious though with jumping; which is a good thing! He even had a BIG bubble bath the other night! (Maybe that was a little early?)- but his incisions are all healed up. Konner is so proud of his chest- that he will show almost anyone. He even shows the grocery clerk. His demeanor has changed a little- but then again he is almot 3. He is fiesty- he does not let his brother push him around at all- okay; he does not let me push him around either. But Fiesty is good and has made him a quick healer. One thing Konner has not lost is his FUN loving smile- boy does that get him almost anything he wants.

Also this week marked my little Karver’s 1st Day of School at 4 year old preschool. He now goes to school 3 days a week for 3 hours in the afternoon. He has a class of 16 students and is pretty excited about it. Today though, he gave me about 5-10 hugs before I left and he needed to know when I would be back. No tears- but it was close. I snapped a few pictures of him getting ready to leave for school- and I just can’t believe how grown up he looks and how handsome he is!

I can’t express enough gratitude for the amazing amount of support we got. All the kind words, thoughts and prayers really did make us feel comforted. All the meals, giftcards, gifts and cards were so very thoughtful, so much appreciated and really made our hearts smile. For a while there, Karver was asking “who is bringing over dinner tonight”? I am humbled and overjoyed by having so much support. Thank you!

So today we went to Madison ALLLL day for a BIG check up. We arrived at 1:30 and we left the office after most of the doctors at 5:30pm (Having a 4 hour check up the day after we were discharged- I knew what we were in store for?)

So Konner had a lengthy Echo to look at his heart, He had all his normal tests; Blood pressure; o2 check, height, weight, and his several doctors that look at him. He also had a Urine test, a Liver Panel and a Lab Draw. (Konner was so brave and did not even shed a tear during the lab draw- thanks to mom for the Magic Cream; which I tell you is something that I have to FIGHT for). Why? Why- if this little cream they put on their arm helps them not feel the poke- why is it something that is just not used for ALL these little kiddos? Anyway, I know about it and believe you, me… if I can help Konner not feel at least one thing- I will do it!

Okay- so how does everything look? Good…. he looks really good. They stopped one of his diurectics- Yeah! Of course he is still on his other one, but he is looking a little dry (which is a good thing as far as his lungs, and any fluid around his heart). We have to watch him closely over the next 10 days to see if there is any signs of extra fluid. We do that through measuring his o2′s, BP and his heart rate here at home. We also can tell with some simple skin tests and puffy eyes and stuff like that.

His Heart is functioning as designed too. No concerns there.

THe biggest thing that Konner has going on is trying to get his Coumadin/Blood Thinners under control. They called us after his labs and Konner’s INR # should be 1.5-2.0 and he is currently at 6.1 Ouch! Thin, Thin blood. Scary thin. So we were insturcted to stop it for 2 days and another blood draw on Friday morning. We were instructed to keep Konner VERY low key today and tomorrow- a small bump to the head could be VERY dangerous for a BLEED. So MOVIE Day today!! We also have to worry the OTHER way as well…. so stopping it for 2 days- we can’t have Konner’s blood CLOT at all…. that could be even MORE dangerous. So as you can tell it is a FINE line- that everyone is watching closely. Not to mention, that I think that is why Konner has not been feeling well- I bet he has been feeling dizzy and he has just been whiny. (Konner had a blood draw on Thursday of last week- and then I said “so he will have another one on Monday- right?” and they told me that he could wait till Wed when we went to Madison. So as you can tell I am a little irritated that I did not PUSH for his blood draw on Monday- we could have caught the RISE a little earlier).

Overall, Konner is ONLY almost 2 weeks Post OP. He is doing remarkable. He really does not let things get him down. Mom and Dad took out his Chest tube sutures on Sunday and he started removing his steri strips off his chest incision…. so he is currently TAPE free. Not Adhesive free though- you should see his poor chest, legs and arms. Adhesive everywhere. Yes, I have adhesive remover but just wiping it right now causes bruising, so we will WAIT to scrub on his skin. He just looks like he went through a TAPE roller. Again, If this is one of my biggest concerns, you call tell that things are really going well.

I think the hardest thing right now for me, is that I have to be right by him all the time. He has a hard time standing up from a sitting position or sometimes getting off the couch- so he is pretty NEEDY. Plus I like to be around him, to keep him out of harms way. My house is out of control right now, as I have not done much of anything in a week. Yikes!

Thanks soooo much for all the kind words, prayers, cards, meals and thoughts…… we feel each and everyone of them.
~Jennifer

Yes we made it HOME! I can’t believe that my little Konner endured an 7 hour Open Heart Surgery with his heart stopped for about 1 hour and restarted; chest wide open and ribs cracked. Had 4 chest tubes in his chest- an arterial line in his groin, a LA line into his heart, a CVP line into his heart, pacing wires into his heart, and 2 IV’s in his hands, monitors on his head, his back, and toe and 8 other monitor leads all over his body; AND he had ALLLLLLL this and is HOME in Only a short 5 days or 116 hours.

WOW- the Power of Prayer. Konner is one tough cookie! He was a CHAMP from the word “go” till the word “home”. The nurses said that he was a Great patient and they don’t see many like it. He was even to the point where at 4am; he would not even cry for his blood draws.

Konner does have quite a recovery here at home…. the next 3-4 weeks will be very crucial to keep him safe, and healthy. We even get to take his sutures out next week; since he was out of the hospital faster than his holes have healed. He is walking around; which is amazing and looks stronger everyday. He did ride the “gator” (A power wheels john deere)- with a Helmet on and Karver drove nice and slow. He also did ride a little bit on a swing. He WANTS to do everything- but we are trying to keep him safe. The scariest thing so far that he did was he was singing “Take me out to the ballgame” with his brother and at the end of the song- Karver falls to the floor and says “timber rattlers”. Konner says “I want to do that and starts to fall chest first to the floor. I grabbed him and said “oh no- not yet little boy” and he cried and was mad that he could not do it. Crazy!! Ok- I am typing this and Konner is sitting next to me on the floor- he got up and jumped over something that is on the floor. I just turned and asked him- “Did you just jump” and he said “Yes” with a cute little smile.

Konner is on ALOT of medicine; some very STRONG diruectics that can get us into trouble very fast…. and some 3 MAJOR blood thinners; including coumadin- which also can get us into trouble very fast. We have to keep on eye on him and watch these meds very carefully. These meds will be weaned; but he will be on most for life. Konner is also on a Low-fat diet; so watching the foods that he is eating is also put a little more mental strain on food. Keeping him drinking, peeing and pooping is also key for us!!

Right now, trying to manage Konner’s “limited” ability to play and move; keeping him a little more still and also keeping up with a very active 4 year old, Karver- seems to be my challenge right now. Konner wants to do EVERYTHING his brother is doing.

Konner will be visiting the doctor a lot in the next few weeks. We have an appt tomorrow- Thursday for chest x-ray and an appt on Friday for an INR Blood Draw. He has blood draws 2-3 times a week. We then have to drive to Madison on a weekly basis for a Echo and Chest x-ray and a visit to the Cardiologist. So as you can tell, we are HOME, to our own beds, but yet will be in and out so much over the next few weeks.

Thank you soooooo much for all your prayers, kind words and thoughts. Power of Prayer is amazing…. and as we left; I looked back up to our 3rd floor Window and there is “Boomer” the Panda from our VBS in our window with outstretched arms saying “God watches over you”! Yes he does! Thank you GOD!

Prayers still needed to remain healthy and that recovery is fast and smooth for Konner…. also a quick prayer for those still sick in the hospital, for those parents that now have “heart angels” and for those families that are awaiting anxiously to go into the hospital. “Please God- put peace in all these hearts; as you did mine! Amen”

~Jennifer~

1:30 PM

Well we woke up ready to go this morning but the only problem is there is no express check out in the CICU. No orders slid under the door waiting for you to find them when you are ready to leave. It’s a lot of waiting for the system to catch up with what the doctors have said. Konners labs came back good this morning, the Physician Assistant looked over Konner’s dressings and they are looking good, we talked to dietary and we understand the low fat diet Konner has to be on, we have all the new meds explained, and rounds went through 3 hours ago and we were told we could go. So now we wait for the system to catch up…

Jennifer has the hardest time with waiting. She was ready to go when she woke up with morning. Since it is our 4th time being here I know what to expect and as long as we are out of here before sun down I am ok with that. All we are really waiting for is for the orders to get signed and for Konner to have the last two IV’s taken out of his hands. Its paper work and waiting for someone to go into the computer to update Konner’s chart so it says he can go home. Bags are packed and the car is loaded, we are ready to go.

Consider us out the door and I will post something later tonight once we are home.

5:30 PM

So is it just me or does it seem like going home from open heart surgery after only 4 or 5 days of recovery is insane? I honestly thought we would be here at least double that. Yesterday I said I did not really know what was keeping us here and even now I am not really clear. From my totally and completely unprofessional opinion Konner seems ready to go home. He has been up and walking around, he is starting to act like himself, all the plumbing is working, and he is eating and drinking really well. Today he had his echo and EKG which are standard things you do before you go home and both of those were done before lunch. The results from the echo and EKG were good so nothing stopping us there. Really I would think we could leave today but during rounds doctors said let’s get you out of here tomorrow. Leaving tomorrow is totally fine with me. I had a mindset we would be here A LOT longer so leaving sooner seems strange anyway. I know even though Konner is starting to come around he really needs the rest. Once he gets home he is going to try and get back into his old routine (trying to keep up with Karver) which is going to be hard for him to do.

So we don’t know what time we are leaving tomorrow. From past experience when you are told tomorrow that could be anywhere from 12 am to 12 pm. So we will wait and see what tomorrow brings but we expect to be at home tomorrow night and Konner will be sleeping in his own bed!

I know Konner makes this look easy but flying in and out is not the norm. We know another family that had the same surgery as Konner two days before him and they are still here. You just never know how these things will go. I will say though we are truly blessed. The support and prayers everyone has sent our way made this possible. We really want to thank everyone again for everything. From the blog posts, emails, hugs, prayers, cards, care packages, and offers to help any way you could let know we were not alone and have a huge network of support. THANKS ALL OF YOU!!!

Konner, Karver, Jennifer and I look forward to seeing everyone and thanking you in person for all the support!

~Kraig

10:15 PM

This morning started out with the anticipation of Konner shedding his last two chest tubes. At 9 am when the doctor came in and asked when his last food or drink was. I spilled the beans that he had an animal cracker (I really mean ONE cracker) at 6 am. Konner was supposed to be without food at 4 am so they could remove the tubes at 10 am. We did not really think having one animal cracker would throw a wrench in the whole operation of removing his chest tubes but it did. Now the removal was delayed till 11:30. So because of one animal cracker Konner had to go without food or drink for 2 more hours. Oops!!! At 11:30 there was some hesitation because of the output in the tubes and they were not sure if removing them was a good idea. I want what’s best for Konner but if you are going to keep him from food or drink for 8 hours you better not just figure out it’s not the right time after you make him suffer for 8 hours. When they were discussing what to do I just walked away. I did not want to get in the middle of the conversations and I wanted them to do what was right for Konner. In the end they did decide to pull the chest tubes which will help Konner be more comfortable and get around. Now Konner only has an IV line in each hand they use to give him medicine.

Shortly after the tubes were pulled dad, Marilyn, and Karver came to visit. One of the doctors that pulled Konner’s chest tubes escorted them to Konner’s room. Jennifer and I got big hugs from Karver. It was so great to see him. Karver was so gentle with Konner and gave him the nicest hug. Konner gave Karver all the toys and stickers he had collected for him. Konner was pretty tired and rested while Jennifer, Karver, and I went to lunch. Karver was so happy to see us, his energy was revitalizing. As we were walking back to Konner’s room Karver yells out “grandpa.” Jennifer’s dad was checking in to see Konner. After we got back to the room we loaded Konner in a wagon and we all took him for a ride to the play room in the PICU. Konner was not really all that excited about playing but he did anyway. Karver really enjoyed pushing his brother in the wagon to and from the play room. He was such a proud older brother as he pushed him down the hall.

Towards the end of the evening my dad and I went to get dinner for everyone. When we got back Konner was looking so much better. He was smiling, talking, and laughing. It’s probably the best spirits I have seen him in. I asked what happed while I was gone and Jennifer said they just gave him some Tylenol. Well I can’t believe the 180 but we will take it. We all had dinner and then Karver and Konner sat on the floor playing cars. I wish I would have taken some pictures of the boys but all the chaos of the day I totally got distracted.

When Karver left we loaded Konner up in the wagon and walked him to the entrance of the PICU. Karver made us promise we would be home in two days but I don’t know if we can keep that promise. I think we will have a better idea where we will be at tomorrow. It’s hard to believe we are only 72 hours post open heart surgery and the thought of heading home soon does not seem unrealistic. Tomorrow we will ask what we need to do to go home because I really have no idea. Till then I am just glad I got to see Karver and I got a glimpse of the old Konner.

~Kraig

9:45 pm

We made a lot more progress today. I know I said I probably would not post again but I think all the successes are worthy of an update. First and foremost we got Konner out of bed and I held him for a while. We asked him whose lap he wanted to sit in and daddy won. I got to hold him for about an hour till we were both got to hot.

Then at rounds the doctors lifted the clear liquids diet and said he can eat a low fat diet. The first couple things he got to eat were animal crackers and Lucky Charms. We didn’t care what he was eating we were just glad he was actually eating.

Later in the afternoon he started to wake up a little more and I played with him and his buddies (that’s what we call his favorite stuffed animals). We played a game where they were sliding down the bed and then flying up in the air. I was able to get some smiles and laughs out of him. Success! He even started playing along with me. It was good to see him playing again. We almost get him to sing “Take me out to the ball game” but I don’t think he is feeling up to that yet.

As the day went on we knew he had to pee. Konner had been shedding fluids fine while he had the catheter in but since getting it out he has not gone to the bathroom on his own. Last night the nurse put in a temporary catheter and we did not want him to have that done again so we were really trying hard to get him to go. After trying the potty chair several times he finally got him to go to the bathroom! As if going pee was not a big enough accomplishment he didn’t use the potty chair by his bed. With help from Jennifer and me he walked from his bed to the bathroom. Jennifer carried him back since we thought he had accomplished enough and looked tired.

What a great afternoon and we are looking forward to tomorrow. Karver will be coming down so we are all looking forward to reuniting the family!