Tuesday, July 17, 2018

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!

Monday, July 9, 2018

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

Wednesday, July 4, 2018

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!

Friday, June 8, 2018

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

Thursday, June 7, 2018

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.

Wednesday, June 6, 2018

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”

Tuesday, May 15, 2018

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 2nd 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 7th 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.