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.