A recap of post-op day one

The theme of today was loosing things!!!! Blaise is doing outstanding! Right on track so far! He has completely blown me away with how he’s acting. It’s like he somehow understands why he is going through all of this. He’s not mad at all. He may say I don’t want to do that, but eventually without putting up hardly any fight follows through. 

He was cleared to start solids, however I’m not sure anyone that would want to eat what he gets to choose from. He’s on a very strict diet where he gets less then 3 g of fat per day, less then 1 gram per meal. He started with some Gatorade, club crackers, egg beaters eggs and mandarin oranges. He ate about three mandarin oranges and two bites of eggs. Supper was a few sips of beef broth, an orange popsicle (all of it) and a couple bites of yogurt. 

It took us awhile through the night and this morning to get the right mix of pain medication for him. He was in quite a bit of pain this morning. Tears in his eyes crying that he hurt so bad and telling me it was the worst pain of his life and it hurt so bad he could just pass out. He asked to go home where there was no pain. Completely broke my heart. We did a round of morphine really early this morning, then switched to OxyContin and Tylenol. 

A highlight of his morning was a visit from three if the service dogs. We got an upwards crack of his lips, if almost call it a smile. 

Mid morning physical therapy came in and worked on moving him to sit up in a chair. It took a lot of try, help and convincing but he did it. We all think it actually helped him feel better to get off his back, which was his main pain complaint. He sat in the chair for a half hour! Again tonight he sat for another 20 or 30 minutes while he got switched from an operating bed to hospital bed. 

He has lost his art line, Foley catheter, heart rate meds, general fluids and other lines. He’s taking all meds by mouth (with some convincing). He’s on a permanent setting if .5 of nasal cannula oxygen.  His only current line is for heparin!! And of course iv lines in both hands. Still has three drainage tubes, pacer wires and would bandages. 

Poor babe has been messed with and interrupted enough today that he hasn’t even had a solid straight hour nap and keeps nodding off every chance he gets. 

Our hope is that we gave no complications. The biggest complication and reason for prolonged hospital stays for kids who’ve had the Fontan surgery is excessive fluid drainage from their chest tubes. Some kids will drain for weeks on end meaning long hospital stays. The best thing he can do right now is be up moving, walking, deep breathing etc. prayers for tomorrow is definitely this. We really need to get him up more. For him not to be afraid to do this and not be in lots of pain. For an increase in appetite and drinking fluids. It’s s balancing act for him to drink enough to stay hydrated since he’s on lasix to pull fluid off. 

Mike and I both made it back to the rainbow house for showers, and are feeling good. 

Sutton and Holten are doing good, but my mom heart is missing them and I know they are missing us!! 

We are thanking God quite a bit today, while continuing to pray for the future days! 

Picture 1 completely exhausted after making it to chair. Pic 2 service dog visit. Pic 3 sitting on edge of bed for first time

Morning update

Let’s start out by saying, Michael is way more calm and collected then myself and does such a better job calming Blaise then myself. (No shocker to those who know me!!) So grateful for him!! He pulled the all-nighter, mom would have been a nervous wreck. 

The true rockstar is Blaise. He is blowing my mind how calm and cool he is. He started waking up around 8 and never cried or complained. He’d calmly ask what they were doing, requests sips of water and calmly talk. After they drew the 8 pm blood gasses, they informed us his lactate level was high. They had the picu doctor come in and they called Dr Alli, the surgeon who was assisted Dr Hammel. They decided to draw them every hour instead of two. If there was no improvement they were gonna try fluids (opposite of what they normally want to do after heart surgery) to see if that would help. Blaise’s were 2.9, anything above 2 is concern. At their next draw they were 2.5 and midnight 2. Hallelujah! Also, they were working on fixing his heparin levels as his chest tube output increased too much. 

I headed for rainbow house around midnight, and got back around 6 to switch mike. 

I got back at six this morning and learned Blaise threw up right after midnight. They stopped his drinking and switched back to ice chips and gave him zofran. It sounds like his pain levels increased during the night and they started back on morphine and got him an ice pack for his back to try and help. 

He was on blood pressure meds to lower it, and had to change to one to raise it during night. 

He has to be on heparin blood thinner, but his chest tube blood drainage increased way to much so they totally stopped it and restarted around 6 am. 

He was complaining of his chest hurting so bad this morning " the worst pain he could ever think" in his words so more morphine again.

Besides the obvious medical goals, others are getting him sitting in chair and walking today. 

We are grateful, we feel blessed. Blaise keeps heading the right direction. 

Fontan surgery updates

7:30 everything is going very good so far. He’s still been asleep the whole time. They are starting to wean his sedation. He had his eyes open just now for about three minutes, asked for some water- he got two ice chips. Also asked to sit up, so we raised his bed a bit which the nurse said was actually good for his new fontan circulation. I whispered I love you and he whispered back I love you too! 😭❤️His lips and toes are pink for the first time in his life- mike and I almost think he looks like a different kid! His oxygen saturation’s are running 97, also the highest they’ve ever been in his life!! The switched his pain meds from fentnyal to morphine, are lowering his dopamine for blood pressure. His blood gasses have all been coming back good. Honestly, as good as we could have hoped for right now. I’ll say again how overwhelmed we were today with everyone’s support- we all LOVE this kid!! 

They just did shift change for nurses and will be doing rounds at nine. Only one of us can stay in the picu with him tonight/ not sure who yet. 

4:00 we finally just saw him. Everything is going good. He’s still sedated we can’t touch or talk to him for prob another three hours. He’s got meds and lines running everywhere, I can’t begin to say what all he’s on. He’s extubated, just on nasal cannula oxygen. He has three chest drainage tubes and his pacer wires are still in. He’s on quite a few pain meds. They had to give him some fluids and some blood pressure meds as it was low. All are normal things. As time passes, risks if complications will decrease. He’s got some stridor noise going on in his throat, we are adjusting his head to help right now. Here’s a current pic and one from earlier. We know the prayers are being heard! 

2:15 no update.... still waiting for him to come out of surgery. We haven’t had an update, praying everything is still going ok 

Noon AMEN, AMEN, Glory to God!! Dr Hammel just came in, the repair has been done. The Fontan went fine, his pressures are fine, he did a non fenestrated (no hole) Fontan. Dr Hammels assistant is currently closing his chest. He put in three drainage tubes. Current prayer requests: to come out of surgery off the ventilator, no blood clots, maintain blood pressure, no extra complications drainage. We are no where near out of the woods yet, so keep prayers coming. It will be an hour and a half before he’s finished. Lots of hurdles in the next 36 hours- praying this Fontan keeps working and his body approves. 

I wanted to add how amazed moved and touched we are by all of your support. We can’t wait to show Blaise your messages photos and more. Our apologies if we aren’t currently able to respond to messages but please know that we are getting them!! ❤️❤️

10:50 The nurse just came into our waiting room to say they just made it through scar tissue and are starting the Fontan repair. A lot of scar tissue, and they had to go slow. Please Lord watch over Blaise while on bypass and while his heart is cut and sewn and repaired. 

10. The nurse called about 9:10 and said they’d made the incision (Praise the Lord) and he went to sleep well and lines went in well. 

9:00 Dr Hammel was just in. They’ve performed the echo and nothing has changed on it so it’s go time for the Fontan. Dr Hammel was calm, we told him we’ve said many prayers and he headed off to save our little boy. It will take quite a bit of time to get through the layers of scar tissue to cut through his sternum. Once in, fontan should take 1/2 hour. Probably three hours total from now he said. 

8:00 We’ve kissed him and he’s handed off at the surgery doors. He was very calm this morning, besides having to take his versed medicine to calm him. He threw a fit and kept yelling he was gonna puke. It kicked in and he was pretty out of it when we handed him off. Dr Hammel is doing an echo now and then will be in to tak to us. 

6:50 am We are checked in, calm and ready. Watching Berenstain Bears movie while waiting. God’s on our side, we can feel it!! Keep the prayers coming strong!

Updates will be on this same post, moved to the top as they are made.  

PreOp Day

First off, our family is overwhelmed with the prayers, love and support we are receiving. We really can’t put into words how much it means to us, and how touched we are by all of it. We know the prayers are being heard. From the cards, gifts and even the continual prayer chain so many of you signed up for your 15 min slot over the next two days- we are feeling the support.

We survived the fair, and besides Blaise, proved a great distraction for all of us. The kids were in bed by 9:30 last night and Mike and I felt pretty packed and ready to go. The last two nights have been a little rough for Blaise with lots of nervous questions and tears. I’ve laid with him in bed each night reassuring him. Honestly, Mike and I are doing pretty good. We know Blaise has to go through this surgery and are remembering that his heart has been through open heart surgery twice before- so it should handle a third the same way. We are hoping once the recovery subsides Blaise will feel much better.

After dropping Sutton and Holten off at daycare, I lost it a bit- making Sutton upset. I’m sure they are fine now. Our appointments this morning were with a few different doctors including Amy, who hadn’t seen Blaise since his first surgeries when he was born. It was fun to catch up. Blaise handled most of the appointments fine including all his typical vitals, an Ekg, and chest X-ray. We moved over to the cares unit where they used a blue marker to write on his chest. For some reason he was so mad/scared of this that he was screaming and flailing so badly you’d have thought they were cutting off his arm. It was the same for getting his blood drawn. Dr Hammel had gotten called into a surgery, so he wasn’t able to meet with us. I also thought a child life specialist would be coming in today to explain more about what was going to happen, but there wasn’t. Hopefully this happens in the morning, or mike and I will. We were able to get most of the stuff done today, so we won’t need to worry about it in the morning. Our nurse today and tomorrow morning is from Tekamah. We were told since most was done, we won’t need to be there until 630.

From there, we checked into the rainbow house and to waste time Blaise picked the zoo and now Texas Roadhouse for supper. He’s doing good. Tomorrow and Thursday will be the hardest of our lives. I’m sure Blaise is going to get lots of love tonight as Mike and I soak him and every moment up!

I may post again briefly tonight.

One Week Away!

We are officially one week away from surgery! Time is flying by and going slow! We officially told all the kids at the same time on Friday night about the surgery. We basically asked Blaise if he remembered having to go to the hospital for surgery about a month ago- referring to his heart cath. We explained that he was going to have a surgery like this again, where they will put him to sleep and he won't remember anything, they'll work on his heart and when he wakes up his heart will feel better. We said he'd be able to run around like other kids. We told them we'd have to stay a few nights in the hospital and that Sutton and Holten would be staying with babysitters. We have a Child Life specialist coming to meet with Blaise on Tuesday during all of his pre op appointments and we are going to let them be more specific on details like being cut open, the tubes etc and explain to him. All three kids broke down in hysterics, Blaise saying he was scared, Sutton afraid mom and dad weren't coming back home and also being so sensitive saying she wanted them to give Blaise a new heart so it was fixed. Holten was just crying because everyone else was hysterical. We got them all calmed down, did a nightly routine with a book and they were all pretty good by bedtime. It hasn't been brought up a whole lot, but all seem to be doing ok with it.

I've personally just been completely ignoring it and not thinking about it. I'd be a complete mental basket case if I did. I'm almost ignoring it. I"m glad we chose to wait until after the fair this weekend because its a good distraction for all of us in these final few days. We took Blaise back to school shopping this weekend and got all of his stuff. His amazing teacher is letting him go up tomorrow night to see his room and take his things, preparing for him missing out on these things.

I have sitters lined up for the kids for the whole first week for both day and night. God Bless the wonderful people willing to help us out even in less then ideal circumstances. Many prayers to Sutton and Holten as they will be with somewhat strangers for at least seven days and worried about their brother. The amazing outpouring of support from everyone so far is staggering. We have a hard time accepting the support, but realize we honestly couldn't do this without it.

Blaise was given the Anointing of the Sick by our Priest on Saturday morning.

My mind has been racing trying to plan for being gone, having people staying overnight in our home. For those that have experienced fair on a "extreme" level, you know how fast the house gets dirty, laundry piles up etc. I'm not sure how to pack for anyone- or have our house ready in time. Friday, Saturday and Sunday will be 100% fair consumed, followed by me working on day Monday, the fair Monday night and leaving Tuesday morning.

We are officially leaving town around 9 am on Tuesday morning, after dropping Sutton and Holten off at daycare. We will do all of our appointments at Children's during the day, then check into the Rainbow House and spend the night not letting go of our precious fighter. We will check into Children's at 6 am Wednesday morning, surgery at 8. Constant updates will be made as I (or another family member) is able to the blog.

We are asking for prayers, prayers, prayers, and more prayers. God hears us, he knows our needs and I know works miracles. I saw this from one of the other heart moms and thought it would be a neat way to support Blaise. If you'd like to wear red in honor of heart defect awareness, or John Deere Green on Wednesday in support of Blaise please do. Send Mike or I your pictures or tag us on facebook. We will be showing all of these pictures of encouragement to him as soon as we are able. Also, we are welcoming fun short videos by text message at 402-six-eight-nine- 6414. These we will show to Blaise while in the hospital to give him a taste of the outside world and more support.

Thank you all!!!!! GODS GOT THIS!

Official Date

Blaise's surgery date is set for July 25. He will get to enjoy the fair. We are praying for him to stay 100 percent healthy, because even a cold will make us reschedule the date. He is still unaware of his surgery. We need to be in Omaha for all of our pre-op appointments beginning July 24 at 10 am. Mike, Blaise and myself will stay the night at the Rainbow house and check in at 6 am for 8 am surgery.

Lots to get done and organized. Sitters for the other two, lots of packing and details. I'll update again next week with some things including fun ways to support Blaise, that I've learned from other heart moms.

In the meantime, a few recent pictures of Blaise.


Heart cath surgery pictures

Fontan surgery set

Edit- Blaise knows Nothing about anything below. He really has no idea anything is wrong with him. If you see us please don’t say anything in front of him. Mike and I will tell him when the time is right!

Well, the past three weeks have been a roller coaster since Blaise’s cath. I wanted to wait to do an update when we officially knew what was going on. I’ll play catch up for a second. After Blaise’s heart cath on that Thursday, the next Monday afternoon I got a call from Dr. Danfords nurse informing us the Drs has gotten to his case at heart conference that morning andvoted to proceeds with the Fontan, however she indicated that Blaise’s heart is unique beyond even regular half-heart kids because he has unique coronary arteries, making his heart coronary artery dependent and the Fontan surgery riskier then what is traditional. She said I’d be getting a call later that week to schedule a surgery date. By Friday, I had not heard anything, so I called back and spoke with Kristy, Dr Hammel, the surgeons scheduler, to ask why I hadn’t been contacted. She informed me that Dr Hammel hadn’t been at the heart conference meeting when they discussed Blaise and wanted to review Blaise’s files himself with a fine tooth comb. Well, ok, I thought. But, the nerves and anxiousness grew knowing Blaise was now riskier, and Dr Hammel wanting to do a further evaluation before making a decision. Almost two weeks passed without ANY word. I was beginning to be convinced Blaise may be headed down the transplant path and not surgery path because they didn’t think he’d survive it. We squeezed in a quick family vacation knowing we’d have to cancel our others trying not to think of the what-ifs in the back of our minds (what if this is the last etc)After another phone call last Friday to Children’s, and being informed I’d have to wait til Monday to talk to Kristy, stresses were all time high. Monday, Kristy called me back saying Dr Hammel could meet with us the next day, yesterday- Tuesday. Michael and I made the trip to Omaha- mike of course not worried and myself actually holding it together pretty well despite knowing our entire world was possibly about to turn upside down. Not knowing if Dr Hammel would lay out a complete loom and doom story on Blaise or not. I’m reminded daily that our challenges are our challenges, and no different then challenges every single other person deals with. Illness, death, cancer, sudden deaths are being dealt with every day, and if and when God chooses us to walk one of these paths- there is nothing we can personally do to change it. We can pray. We share Blaise’s story on here mainly to ask for prayers and to share the Goodness of God that He’s provided us. In fact, I’m feeling a bit more apprehensive and shy about “opening our book” up to so many and our vulnerable ness, however I truly think Blaise is a special kid with special reasonings to be here on Earth- so I’m hoping he inspires some. We also love our communities and their tremendous support!!!

So, back to our meeting. Right off the bat, Kristy indicated that she would be back in after meeting with Dr.Hammel to discuss possible dates. To me- a sigh of relief that they must be thinking Fontan not transplant. Dr. Hammel came in and met with us for over an hour. Honestly, I know A LOT about hearts and Blaise’s but I can’t even begin to explain when he explained to us because so much of it’s over our heads. These doctors are geniuses. Dr Hammel started out by explaining the structure of Blaise’s heart to us again. In laymen’s terms- zero structure on the right side of his heart- no chambers, ventricles, working valves etc. this eliminates him from being able to do three different types of procedures then he can with some kids. He explained the transplant path- providing data and facts all along. He’s “healthy” enough now to be listed very low on transplant list, meaning he may not get heart in time. Of transplanted hearts half survivethe first year. Of those, less then another half make it ten. Complications to other organs etc etc. He explained why Blaise can’t live like he’s currently living any longer- his saturation’s are in the 50’s when moving. With his saturation’s being so low his body is making more red blood cells to try and compensate and provide his body with more oxygen. This makes his blood very thick, which could create clots and cause him to have a stroke at any time. He explained the Fontan route. Basically a surgery that is temporary to improve his blood oxygen saturation’s. Currently blood in Blaise leaves his heart oxygen rich, is pumped to his brain where it looses oxygen, then onto his lungs and back to his heart. It flows (not pumped I believe) from his heart to his legs and extremities and back to his heart. After fontan the blood is pumped to his extremities, so almost a reverse of what it’s doing now. (Our hearts are nothing like this). Over time his liver and small intestine will develop chirosis of the liver due to recieving oxygen poor blood and many fontan patients end up needing a liver transplant even before a heart one.

So, specific complications for Blaise are this. He has these odd coronary arteries. (I may be saying the open,close part opposite of what it is because it’s all too much to remember). On a normal kids pulmonary artery both the left and right ends are opened up, meaning surgery is good. On Blaise his coronary arteries have caused the pulmonary artery to be closed on one end and opened on the other. If both were closed, he’d have to be listed for transplant. He called Blaise case “moderate”. (In my mind I’m thinking, please Lord let that him being a way of telling me better then severe). I asked if he had operated on a kid like Blaise before and he said yes. I did not ask the outcome, because also in my mind I’m assuming if the out come was tragic, Dr Hammel wouldn’t want to try that path again, right? Also, Blaise will be completely cut open and put on the bypass life support machine. He will not fully drain blaise’s Heart of blood because those pesky coronary arteries need that blood or his heart will fail.

Other notes:  He told us the biggest risk with the coronary arteries for Blaise is passing away from massive heart attack at anytime.  I think he said greatest risk was in the first year of his life, so he thought it could be a positive he’s made it this long. He also said he made it through the first two surgeries with them so we will take that as a positive too. Not often do they have kids do a stress test before the Fontan like Blaise so the have lots of extra data to look at which was helpful. He said Blaise had three positives going for him going into surgery one being heart pressures looking wonderful (I can’t remeber the other two). I believe I counted a minimum of four times where Dr Hammel told us this surgery will fail Blaise at some time in his life. It is not a cure, fix or solution. He 100% expects it to fail on every kid who has received this surgery. He indicated it will but time, many advances are currently being made on artificial heart pumps or transplant down the road. I’ve seen (look at me being optimistic!) many individuals in their 20’s and 30’s with a fontan leading normal lives online and even a couple in person.

They came in and gave us about 8 dates in July to choose from for surgery. The earliest being the 11th. The minimum amount of time in the hospital is two weeks. Often kids stay for over a month due to chyle leaks in their chest drains. Mike and I are figuring out today if we do surgery before the Burt county fair (July 19-24) or after. I realize for any other family this wouldn’t matter but the fair is blsise’s life. He talks about the fair 365 days a year. If we wait til after, he most likely won’t start school on time Aug 15........ big decisions and precious fleeting moments with our boy are flying by us so quickly right now.

Thank you for the prayers, and I’m amazed if you made it to the end !!!!! Ha!