Home!

First, my apologies for not getting an update sooner!! The past few days have been a whirl-wind! Here’s the Wednesday post from noon on Facebook! We were discharged!! 

Blessed. Overwhelmed. We are on our way HOME! There are overachievers, and then there is Blaise. We could have never imagined how quickly and amazing Blaise would do. Our discharge papers list his oxygen saturation’s as 99- After living his life in the 80’s and 50-60 with exercise. 😭 We can’t thank you enough for the prayers- it’s what’s gotten us here!

"Lord! I’m bursting with joy over what you’ve done for me! My lips are full of perpetual praise. I’m boasting of you and all your works, so let all who are discouraged take heart. Join me, everyone! Let’s praise the Lord together. Let’s make him famous! Let’s make his name glorious to all. "

So, we got home around 1, picked up the other two kids and were hanging out enjoying our family time. We worked outside a bit pulling some weeds and headed inside around 4. Blaise went to lay on couch and as I covered him up, thought he felt warm. We were consistently getting temp readings between 99.5 and 100.5. Granted I totally get on a normal healthy kid this isn’t even a temp, but on a kid 7 days post-open heart surgery I got concerned. I made a phone call to the on-call cardio who said to monitor it and watch for changes in breathing, activity, etc. We ate supper and around 7, his temp was 102.6. I decided we probably should head to Omaha to have him checked out, so about six hours st home and we headed to the ER. Poor Blaise was hysterical freaking out not wanting to go back there, not sure what was going to happen. Sutton was so worried sobbing. My parents met us at Chikdrens and took the little two home. After a full rundown of more x Ray, blood work, urine sample, they decided his CRP level was elevated, which is basically the bodies inflammation, and they said not uncommon after his surgery. We finally made it home at midnight and still spent the first night in our beds. Thursday was the same fever running from 99.5-101. Mike went trucking to Illinois Thursday night leaving a very nervous me home with the kids. Friday morning was the same with Blaise’s fevers, so I thought I better make a call to cardio before the long weekend. They decided they better see us, so back down yesterday afternoon. Another X-ray, more blood work. The blood work shows his white blood cells trending down, so they don’t think an infection. His CRP level went up again from Wednesday night, but I guess not enough to be concerned. His potassium is a bit off. His X-ray showed even more "junk" on his left lung from even Wednesday night. Dr Hammel’s PA Hollie who saw us feels pretty convinced that what is showing up in the X-ray is not actually fluid but just junk. She thinks Blaise caught a virus while in the hospital causing the fevers and junk. We headed home, hoping this is true. He acts fine, breathing fine, his saturation’s are always 95 or better, appetite good. 

Today has been much the same with temps. Mike left at noon for West Virginia until Tuesday morning. Im hoping tomorrow is the day these fevers move on and I’m not so on edge!

We did get the chance to visit Papa and monna camping over at blue lake! We needed some relaxing time!

Status Quo

The past two days for Blaise have basically been status quo, which is exactly what we want them to be. Honestly, there's not a whole lot to update. Today, Blaise got the last two iv's out of his hands, is fully switched from iv meds to oral meds, took a bath last night and got the dressings removed from his drainage sites with just regular bandaids. He gained a few grams over night-yay! He had an EKG and an ECHO done today. His xray this morning looked clear again- Amen!! We are currently working on getting the right mix of meds to maintain the correct levels for Blaise. His sodium level is still low, so we are trying to get that to level off. The cardiologist's follow what they call the "Fontan Pathway" for all Fontan kids. Basically this instructs them everything on how to handle these kids. Right now the pathway wants Blaise on two strong diuretics to help keep his lungs free of fluid since that is the biggest complication post - Fontan. Amazingly (seriously, only God is to thank for this) Blaise has had hardly any drainage, so the diuretics are putting him on the "dry" side causing the lower sodium levels. 

Currently, Blaise is scheduled to go home on Lasix three times away as a diuretic, another diuretic I can't remember the name of twice a day, enalapril for blood pressure and an aspirin daily. A few of these he will be on for the rest of his life. 

His diet is incredibly strict, and the doctors and nutritionists have been in several times to go over it with us and make sure we feel comfortable going home on it. He is limited to 25 grams of fat per day total. To put in perspective: a fruit roll up has 4. Butter and oil are hereby eliminated from our house. We have to measure, weigh, and evaluate how much Blaise has eaten of what he's given to make sure he's within his limits. The reason for this diet is so that he doesn't start draining fluid, as fat causes this. 

I'd have to say that going into this we were told that the  minimum time they've seen kids be in the hospital was 10 days, the average maximum a month and to plan on two weeks. We were told a story tonight about a Fontan patient who was here three months draining not too long ago. To think of where Blaise is at is strictly a credit to God and the prayers said. 

Other highlights the last two days were working on physical and occupational therapy. This was started the first day after surgery and he gets a bit stronger each day. We are currently working on holding his shoulders back as he is hunched over compensating from his chest hurting. On Monday he spent nearly a half hour petting Sven, the famous therapy dog at Children's. He was approved to "leave the floor" which meant he could go down to the lobby atrium area, over to the Specialty Clinic Building where we can see the construction work better and outside on the patio. The movement was good for all of us!!

I've Got No Strings

If the theme song for yesterday was Moving On Up, then today's was from the movie Pinocchio, "I've Got No Strings". Today's day was even better then yesterday. Blaise and I (mom) had a good night of peaceful sleep in the new room, with just another early wake up call for xrays and blood draw then back to bed. The cardiac surgery department decided that since Blaise's xrays looked good with no plueral effusions or fluid build-up, combined with the fact that he had very little drainage over the last 24 hours quite a few awesome deicisions were made today. First, he got his oxygen removed. Then they came in and removed his lead lines that measure heart rate, etc, then he got his pulse ox line removed. Then they made the huge decision to remove his pacer wire and ALL THREE drainage tubes. I honestly still can't believe I'm typing that. I was seriously a little apprehensive and expressed this to Dr. Hammels PA several times, but in the end told her she was the doctor, not myself and she's done this probably a hundred more times then myself. My fear in removing them was that if fluid build up starts, they'd have to put Blaise back into the OR to perform an operation to replace them. It's a bit unbelievable that they are out this early, as they are not typically taken out this early in Fontan surgeries due to the excessive drainage. Another reason this little boy is a true MIRACLE. The removal of the lines is super painful, and just done bedside without any numbing or anesthesia. Mike and I held each of Blaise's hands and tried not to watch/pass out and she pulled all three out. He screamed just a tad bit, but I was blown away proud of him. So were all of the nurses.

Other things on"best day ever" according to Blaise, include no word on his sodium levels, so we are guessing they must have been better. Blaise finally "did the job" in the stool department. His attitude was totally improved today. Lots of smiles, laughing and more. He still has lots of anxiety with his meds, but is doing better.

The highlight of the day was a visit from Sutton and Holten!!! It was so needed by all five of us. Sutton was so sweet and caring with Blaise, and we even caught crazy-man Holten patting him on the back.

I think how far Blaise has come is a true testament to God. He's our true little miracle here on Earth. Prayers tonight that tomorrow is another day of steps forward and no fluid build up.

Pics 1) helping Blaise walk to play room 2) seeing each other for first time 3) tube free chest! 4) painting a tractor this morning

Moving on Up! Post day 3

A good day here!!! The boys stayed at the hospital last night, and were able to sleep all night only getting woken up maybe twice!! A finger poke for blood and X-ray and back to bed til 730! 

Mike started out the day singing the song "We’re Moving On Up" and he was right!!! Around 4:30 today they finally had a bed ready for Blaise to head upstairs to the 5th floor and out of the picu!!!!

A few highlights of our otherwise boring day included going on four walks. The first one we made it to an empty room so Blaise could look out at Dodge Street and construction of the new hospital. After another morning if eatingnothing  for breakfast, I asked how important sticking to the 3 g fat/day diet was in comparison to Blaise just eating something. They agreed and he picked cheese pizza and French fries. He ate about half the mini pizza and four French fries. Tonight for supper he ate half a hamburger and half bag of baked Cheetos!! 

After making it to the 5th floor Blaise walked to the playroom where he played some xbox and the pinball machine. 

It’s been very disheartening and sad as Blaise’s parents the past few days because it was almost like there was no "Blaise" inside his face. No talking, no emotion, lots of staring off to space etc. we keep saying how we hope our old Blaise comes back. After telling Blaise we were moving up to five and cheering and celebrating Blaise gave a smile and said yay! Once up here we are noticing more talking from him and a few more smiles. Fingers crossed the move is good! 

Medicines aren’t going much better but one of the amazing nurses has created s cocktail by crushing/mixing about four of his meds in once medicine cup mixed with apple juice and he’s tolerating it. Our night nurse tonight suggested chasing it with root beer to mask the taste and he did ok with that. 

Medically speaking, Blaise’s kidney levels came down to normal but now his sodium levels are low. We tried giving him lots of salty ketchup to help, otherwise he’s gonna have to take the worst tasting medicine ever tmrw. Prayers this doesn’t happen! We still need him to poop, but tried a few times today and some toots so hopefully soon. (I hope Blaise doesn’t kill me if he ever reads this as s teenager! Lol) all drainage tubes are still in. Also this is unbelievable but the only pain medicine he is on is Tylenol, same stuff we give our kids st home for fevers. He went 12 hours last night and today without any pain meds!!!!!!! How in the world?!? 

Sutton and Holten are coming tomorrow to visit and none of us can wait!!! Pics are 1) looking out dodge 2) coloring a craft 3) in the wheelchair moving upstairs 4) playing xbox

Post op day two

Last night was a pretty rough night for Blaise with lots of vomiting. A main source of this is taking one of his diuretic medicines orally. They tried to dose it twice, both times coming up before they gave up. Poor baby was up until about 4 am. Thankfully our awesome nurse was able to get him to take this med around 9 am when mixed with apple juice. At rounds this morning we learned there is a pocket of air on his lungs that developed. They re X-ray at 4 Pm, and it looks like it resolved. To help this, they hooked up suction to two more of his drain tubes. His kidney levels are little bit high, we will look again at those numbers in the morning. The biggest things they wanted to day were to get up walking and improve his appetite.

He walked a total of four times today!! Each one a little bit further. Seriously, this kid is unbelievable. I love him to pieces. The first time he was up he got to kick a soccer ball at bowling ball pins a few times. Then on our first walk he took suction cup toys and stuck them to the outside glass doors of the patient rooms as we walked past. He sat in his chair quite a few times. He was able to put on underwear and shorts today, I think that helped him feel a bit more human.

Tonight we tried to change his most hated medicine to pill form in applesauce. Little pistol sorted it right out and spit the pill out. We finally got him to get it down. It's totally a mental case right now with him and freaking out about taking medicine after last nights episodes. This is probably one of our bigger prayer requests right now, is that taking medicine isn't so stressful and lots easier for him. Right now, it's almost an hour episode of us doing everything we can think of to get it down.

Other things that happened today were getting rid of his heparin since he's up walking and his other ART line went bad. So instead of doing his blood draws from his line, they now have to do an actual blood draw stick with needle in his arm each time. A funny line from Blaise today is that when they got done pulling the line out of his chest and Blaise saw how long it was he said "well no wonder that hurt!"

Another request is the increase in food intake. He has eaten about half of a mandarin orange fruit cup for supper and 4 bites of scrambled eggs.

The good news at 9 pm rounds was that they are going to try and finally let Blaise get some sleep tonight by only waking him up every 4 hours. Tonight is Mikes turn to stay.

They haven't said it yet, but we are really really hoping to get out of the PICU and up to the 5th floor soon. There is a video I posted earlier on Facebook of Blaise walking. Can't quite figure out how to get it on the blog yet.


Pink lips and toes for the first time EVER

Removing incision dressing

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!

Home and doing great!

Blaise did a great job yesterday in the recovery room. They actually entered his body in three places, once in his neck, and once in each groin. Traditionally they only need one, but he needed two because he has a vortex shunt in his heart, so I believe they needed to go in from two different locations since maybe they couldn’t pass through that. The third location was due to going into his right leg before realizing his femeral artery was blocked there. Anyway, those entry spots are not stitched closed, but clot on there own, shutting it off. He had to lay flat on his back and not move his legs for six hours, not even to use restroom. They did not want these clots to move or break open and bleed out. He did excellent laying there, watched the Little Rascal movie had a few of our favorite nurses stop by to visit and played the hospital iPad. He never took a nap! Around 6, he was released to go home. We did a quick Burger King stop, and got him tucked into bed around 730 when we got home. Sutton and Holten were both very concerned loving caring siblings who noticed all of Blaise’s “owies.”

I went to work today and Mike stayed home with Blaise who was on bed rest. They did make it to Bomgaars to pick out any farm toy he wanted, our bribe for going through everything. He choose a JD 4020, with a mower. He did really good today, took a nap, played nicely. We got his pressure dressings off and I’m sure that has to feel better!

It sounds like the heart department at Children’s blew up into a chaotic hot mess this week, with lots of emergency cases being admitted. Since Blaise is doing fine, his case is not considered emergent. The findings from his heart cath will be presented during one of the meetings all of the cardiologist, surgeons and heart depts have every Monday morning. Due to all the emergency cases taking priority and a 2 hour timeframe, we don’t think they’ll have time to discuss Blaise this next Monday, so we will have to wait another week. Nothing that we are aware of should limit Blaise from having his big open heart surgery yet this summer. Thank you for all the prayers, thoughts and messages! There is nothing better then small town Iowa or Nebraska!! A few fun “small world” notes from yesterday- Dr. Danford and Dr Delaneys main nurse, who has been there with us since we got the diagnosis, all our check ups and yesterday is married to my elementary p.e teacher. We also learned that Dr Delaney’s (the heart cath surgeon- he’s done all three of Blaise’s) has a marathon coach and she is originally from Treynor and babysat me when I was little! #godsigns

P.p.s. If anyone is better then me at blogger apps on your phone let me know- mine isn’t letting me add any photos

Heart cath updates

Noon- Thanks be to God! Everything went good! There were no repairs that needed to be made. His anatomy remains the same, so while he has odd coronary arteries it’s working for him. One of the early surgeries the fixed a valve and it doesn’t seem to be narrowing, however during Fontan there may be somethings done on this area. The only other thing we learned was his femeral artery in his right leg is destroyed, most likely from his first heart cath at 24 he’s old. There still is plenty of blood flow to his leg. Mike is currently with him, and they think he should go home tonight. Thank you thank you for the prayers. They will present the findings to Dr. Danford but think he is s candidate for the fontan!!

11:00 they just called to say there were done! Waiting for dr Delaney to come talk to us

10:57 no current update

9:08 Blaise has been taken back for surgery. He got his versed, and after throwing a small fit about taking it, got it done. It started to kick in, and the only one with tears at the surgery door was mom!


we are checked in. Blaise is pretty anxious and nervous. I think the whole hospital could hear him screaming during his blood draw. Dr Delaney has been in, and it sounds more likely that they will keep him over night. Also sounds like they will access him in two spots both the neck and groin, and likely they will have to perform some repairs while in there. The surgery is currently pushed back an hour as his blood has an antibody in it and they are looking for a match.

Heart cath in the morning!

Just a quick update from my phone before tomorrow’s surgery. Blaise is tucked in bed, after a swwwt prayer asking Jesus for a good surgery and good news tomorrow. We told Blaise Monday night after his tball game about his heart cath surgery. We told him the doctors would put him to sleep, take him to the operating room so they could get a better look at his heart, then he would wake up and be done. He immediately got upset crying, burying his face in the couch and saying I’m scared. We tried our best to reassure him all would be fine, and he could pick out any tractor at bomgaars when he was done. He’s steadily asked more questions especially tonight and is very anxious and nervous. He’s very concerned he’ll get a shot- which is about all a six year old can comprehend surgery means. He’s got his John Deere blanket, stuffed tiger and pillow ready to take with him.

We are dropping Sutton and Holten off at 445 am at Jessie’s, as we have to check in at 6. His procedure begins at 8. Many prayers, fears, and reassuring thoughts running through my head right now. I think all in all our family is taking it all in stride, letting the hope for positive outcomes override the incredible fear. Join us in prayer tonight. “Dear Lord Jesus, we ask that you be with Blaise and Dr. Delaney tomorrow during his heart cath. Please keep Blaise safe and calm, please use your hands to guide Dr Delaneys and please let the surgery be successful with no complications, or unwanted discoveries. God, please provide us with excellent news. Amen”

Dusting this thing off

Well folks, here we are. I’m dusting off this ole blog as the time has come for the next step in Blaise’s heart journey. We’ve had six of the most remarkable, completely normal (as much as a half heart kid can be) years, with no medical concerns or complications. We are blessed. God for some reason, has shown us amazing grace, and a path so good, only He could have created it.

With that being said, our lives are about to completely change, specifically Blaise’s. For six years, we’ve gotten consistent reports at his six month cardio checkups. His echo images of his heart remain unchanged, his resting oxygen saturation’s haven’t dropped below 82. When I was originally diagnosed while pregnant with blaise, we were told to expect his third surgery around age two. Each year we’d go to his appointments, nervously waiting for them to tell us it was time for his third open heart surgery. Blaise defied the odds, making it to six without intervention. Traditionally, the Fontan surgery is performed in the summer months 1) to avoid the absolutely terrible and seriously life threatening flu season and 2) to avoid missing school. At our six month check up in March, it was decided that, while his basic reports were looking ok, we would do a stress test on Blaise to see where his oxygen saturation’s droppped to during exercize.

The 2^nd of May, Blaise did his stress test. He did a great job, we couldn’t be more proud. He was of course super nervous, but for being six years old and having no idea what they were doing to him, if it would hurt, or what to expect he did totally awesome. I could go on and on about how amazing this kid is. Immediately, his oxygen saturations dropped into the 50’s. To put that into perspective, a normal child with saturations in the 70’s is put on oxygen and admitted to the hospital icu. At 50, organ damage occurs. Blaise lives every day of his life in the 50’s. Just walking into school causes this. 

It was no surprise due to these numbers, the day after the test our cardio Dr. Danford called wanting to schedule a heart cath surgery. These numbers are too low to have. Blaise has had two of these before: at 1 day old and at 3 months old. It’s common practice to schedule a heart cath followed a few weeks later by the Fontan surgery. Blaise’s heart cath surgery is scheduled for Thursday, June 7^th at 8 a.m. at Children’s Omaha by Dr. Delaney who performed the first two. Deep breaths. It’s hard to even type that, hard to wrap our mind around putting Blaise through a potentially life-ending procedure when he “seems” perfectly normal to all of us. Super important information: we are NOT telling Blaise about any of this yet. He has literally no clue as we do NOT talk about it in front of him. PLEASE, if you run into one of us or Blaise don’t bring it up. We will tell him a day or two beforehand, because as we all know a six year old does not need to spend a month worrying and stressing and getting worked up over what is aboout to happen. 

Our current step one is to get through the heart cath. In comparison to his Fontan procedure, a heart cath should be a walk in the park. The risks and unknowns still remain and are in fact even more risky with someone with only half a heart. The goal of the heart cath is to use a microscopic camera and tool to get a better view of his heart then what we are seeing on the echo, and also measure the various pressures in his heart including the pressure between his heart and lungs. The current prayer request we have is that upon review of his heart cath the doctors, cardiologists and surgeons are able to decide that his heart is a candidate to receive the Fontan open heart procedure, which is what will prolong his life. If he is not a candidate, our only other option is heart transplant, which will be devastating. 

For the heart cath, the will enter his body through either his neck or groin to gain access to his heart. The heart cath procedure will last approx. 2 hours if no other interventions are needed (i.e. ballooning, stenting, coiling off collaterals etc). If he comes off intubation and anesthesia easily, he will need to lie still for two hours if neck access or 6 hours of groin access. Ideally, he would come home the same night. 

After review of the heart cath, we are pretty much 80% sure they will do the Fontan in July if he is a candidate.  We will not know their decision until a week after his cath, or a date of his Fontan surgery until that point either.  We are focusing on just the heart cath for now (or at least I, Erin, am). I’d be a complete basket case if I was focused on his Fontan surgery for the next two months. And, let’s be honest, I’m gonna need a dose of versed myself to get through these surgeries. 

I’ll post a bit about the Fontan Surgery, but will do more when we know it’s “official”.  Blaise was born without the right two chambers of his heart. Normal people have four.  This surgery is a palliative surgery, meaning it will not “fix” his heart but instead re-plumb it for blood to flow without needing four chambers. His heart will never be normal or fixed. This surgery will divert the blood from the interior vena cava and the superior vena cava to the pulmonary arteries without passing through the non-existent right ventricles. After completion, the blood most flow to the lungs without actually being pumped. There are several short-term complications, but the long-term ones are the scary ones. These include chylothorax (a type of pleural effusion), protein losing enteropathy (liver disease/fibrosis) and plastic bronchitis (branching casts of the airways). It is due to these common and deadly complications that Dr. Danford has chosen to wait so long before performing the Fontan surgery. Ideally, it would have been amazing to wait even longer to have this surgery. We will focus on what we hope is a positive successful surgery that will make Blaise feel better in the long-run. For his Fontan surgery, the will be cutting his chest and sternum open again for the third time. Hopefully the scar tissue is not too much to get through. We anticipate a minimum three week hospital stay. One of us will stay in the room with him, while we will also have a room at the Rainbow house. Sutton and Holten will be shuffled between grandparents and their sitter (second mom) Jessie. Hopefully we are not in the hospital for months, and Blaise will be able to start school in August. We are thankful that Erin has accumulated some days off work to use. Michael will truck as he can. 

We most definitely wish we didn’t have to ask for prayers, but we know from previous experience that prayers move mountains, and in Blaise’s case, have been so beneficial. We thank you all from the bottom of our hearts for the words of encouragement and thoughtful gestures. We appreciate it more than you know! Blaise has made quite a few friends and won over quite a few hearts in his six years!

On another note- if you plan on seeing us leading up to the surgeries, please make sure you are illness-free. We will also be using lots of sanitizer, etc.