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.

Thursday, June 16, 2016

Surgery updates

849: update Blaise is back in the recovery room with us. His heart did great during surgery. He was very stable and oxygen saturations are ranging in the mid 80's which is great!! He's still very sleepy and out of it, so we will let him rest. We are beyond grateful to our wonderful friends family and communities for the prayers and support! This kiddo keeps showing us how incredible he is, and God's blessed us more than we can imagine!
740: update Praise the Lord! When the surgeon got in and put him under the serious issue requiring three hour surgery corrected itself when he was fully under and relaxed. They will not be performing surgery on this!!!!! So the simpler 1/2 hour surgery is all that's needed. He's doing good. Prayers work, miracles happen daily!
F7:00 am update We were up early at 445 and checked in by 530. Blaise was very nervous and scared. He watched Peterson farm brothers on iPad. They did give him some verses about 10 minutes before they took him and it's starting to kick in. He cried as they wheeled him away, but nurse came back to say he had quit. His nurse in operating room is named peg and her grandkids call her Mona peg just like Blaise does!!! Great sign!!!! We are waiting for first updates and will continue to update this blog post at the top. We know he's in God's hands and all will go fine!!! Thanks for the prayers!

Surgery updates

7:00 am update We were up early at 445 and checked in by 530. Blaise was very nervous and scared. He watched Peterson farm brothers on iPad. They did give him some verses about 10 minutes before they took him and it's starting to kick in. He cried as they wheeled him away, but nurse came back to say he had quit. His nurse in operating room is named peg and her grandkids call her Mona peg just like Blaise does!!! Great sign!!!! We are waiting for first updates and will continue to update this blog post at the top. We know he's in God's hands and all will go fine!!! Thanks for the prayers!

Friday, June 10, 2016

One week away!!

Hard to believe it's less than a week until Blaise's surgery. A quick update as to what's been happening. Sutton came down with a fever Sunday night and Monday and I immediately freaked out hoping Blaise wouldn't get it. Her temp was at 104 even on medicine. After squeezing in a quick stop at the pediatrician on Monday and an amox prescription, we headed to Omaha to get professional pics of the kids. I felt bad making a super sick Sutton go through it, but I really wanted pictures of Blaise before surgery. Luckily by Tuesday afternoon Sutton was back to normal and Blaise played in his first t ball game that night!! We are so proud of him he did great. This is the only game he'll get to do as he wont be able to after surgery. Wednesday night we ran to pediatrician for his pre-op apt. He weighed 31.6 lbs at 11% percentile and 40 inches I think 35%. He also did his preschool physical. He passed for surgery as long as he stays healthy. After his appointment Mike and I took both kids to the pool to squeeze in as much pool time before he can't swim for four weeks. Thursday night the kids and I went swimming again. Blaise has also been super timid in the water but is blowing bubbles and jumping in from the side. Sutton is unstoppable in the water and loves every second. 

We are currently in the car headed to Wichita Kansas for a wedding this weekend. We ask for continued prayers this weekend for great family time and continued health of Blaise leading up to surgery. We have pre checked in over the phone and have our room reserved at the rainbow house for Wednesday  night since we have to be at children's at 5:30 am Thursday. We also have our fetal echo Wednesday at children's so prayers for a healthy baby as well.