Heart update

 t’s been an interesting five months of heart checkups for Blaise. He hit the five year post-Fontan surgery this summer, and is entering the new “pre-adult” Fontan clinic that was established at children’s this summer. The goal of this new clinic is to follow the kids who’ve had fontan surgeries done and complete regular tests and exams to keep on top of their single-chamber fragile hearts to look for things that are starting to fail, don’t look right, liver damage etc. 

So in July Blaise and I spent two long days getting him evaluated. EKG, holter monitors, echo, bike stress tests, liver ultrasounds, about 12 vials of blood and more. These tests all came out good, and we will repeat them yearly to continue getting baselines. I knew there was a good chance they’d “find something” as we are starting to dive pretty deep into looking at things closer then we ever had. A cardiac MRI was scheduled last Monday for Blaise, a first as well. Unfortunately a few things were seen, including one that’s a more pressing current issue. Today, we had an echo, to try and answer some questions from the MRI.  His fontan is made with a plastic vortex tube/shunt. The blood flows sluggishly through this, and there is one area in here that is showing “something”. It appeared on mri, but was hard to determine. The echo today went the same way and hard to determine. They are concerned it’s a blood clot, or it could also be a fold in the shunt. So, we need to determine what it really is. Next step is to do a ct scan with dye contrast that is scheduled for next Wednesday. If that is still not conclusive enough, they will do the exploratory heart cath surgery to determine. They will also potentially fix a few other things noted in the MRI including coiling new arteries that have formed. If it is a blood clot, they will change him from his daily baby aspirin to Coumadin blood thinner the rest of his life (Not ideal at all) to remove the clot. 

We are so grateful and thankful God continues to bless us with this miracle Blaise. We are praying that the CT provides answers and that there is not a clot! Thank you for our community of support and prayers- God continues to hear then! 

Ten years of appointments

Hard to believe we’ve been on this journey for ten years now. (When I was still pregnant.) By now most everything has changed. His cardiologist Dr danford retired. His surgeon Dr Hammel moved away. His nurse Jenny switched departments, a new hospital has been built. Blaise had his full blown cardiology appointment this morning at Children’s. Since he’s getting older, and we are getting further out from his Fontan surgery, his Cardiologist is now wanting to run more tests and check more things out. Things can start to arise as his modified heart works twice as hard. This could be leaky valves, blood pressure issues, arrhythmia and basically anything else. We are also starting to do blood work tests for heart function, liver enzymes to look for liver failure as that’s one of the most common complications for post-Fontan kids. We also added in wearing a 24- hour holter monitor last week and had his normal echo this morning. It’s been a lot if testing for a kid who hasn’t enjoyed it. He’s also at an age where he understands the depths of what all this means and how important good results are.

Blaise passed everything with flying colors today. All tests, blood work etc came back fine. For the first time he has a one year pass til his next visit. As I told the three doctors in his room today, the past ten year journey has been one that would have been impossible to wrap my head around ten years ago. The highs, lows, daily stress, unknowns. One thing through it all has been Gods incredible blessings He’s given Blaise. We thank God EVERY day. 

Thanks to our "community" for your continued prayers.

Heart month

It’s February 1st, which means it’s Heart Month! 1 in 100 babies are born with a heart defect. Blaise was born with Hypoplastic Right Heart Syndrome, often known as the most severe heart defect. After three open heart surgeries and three heart cath surgeries, Blaise will live his life with only a two (not four) chamber heart. Not a week goes by that I don’t see or hear about the death of another heart warrior. Our family continues to be in awe and so thankful to God for the life He’s provided Blaise. We hope his current heart will last him into his 30’s, and with the constant improvement of modern medicine, even longer. To my other heart mama friends who know what this life is like: you are the strongest moms I know, thank you for the constant support. To Blaise: you are a warrior in the truest form. I’m in amazement of how you live everyday, oblivious to the fact that you are any different. You are the one who reassures me daily that “I’m fine mom, I’m not hot, cold, puffy, blue, clammy, tired, short of breath......” 😂 You’ve also taken the last year in stride, and have heard more no’s then yeses than any kiddo should. I’m forever blessed beyond measure to be your mom. Thank you for the many, many prayers said for Blaise. God has been hearing them!

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