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

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