BNP blues

We just finished Mac's clinic appointment. His BNP is higher - again. 2800 now. Normal is 0-100 and his was 600 12 months ago. It just keeps going up and is a test that indicates heart failure and how much fluid is body is battling. It fluctuates and we really want it to see it drop. His heart function doesn't look improved so his team here is sending all results to Boston. We are planning a trip up there in February so Macsen can have a 3D echo with Dr.Marx and his electrophysiologist can also take a look at his pacemaker. We will also meet with Dr.Blume, the heart failure doctor. This will be the 6 month testing after his pacemaker to see if it is actually helping or if it isn't. It will tell us if we need to list him for transplant which I desperately don't want to do. His kidneys aren't too happy lately - the multiple diuretics he needs to manage his heart failure hurt his kidneys. He defnitly is more irritable and has less energy to do even the simple things like put on socks and shoes himself.
Instead of rushing back to Enterprise after our appointment we were able to spend the night in Ronald Mcdonald house. It is always wonderful to meet other families with medical kiddos and it never fails to humble me on what our family has endured compared to others.. We met a mother who has 2 special needs kids and who lost everything in the hurricane that destroyed the gulf coast. Here I am complaining about some minor flooding in our house and they lost it all. And had 2 little ones that needed to be in the hospital at the time.
We will be spending Thanksgiving in a cabin my sweet sister rented for the holiday. We hope to spend lots of time together hiking and cooking and eating and making crafts.

Peanut Festival

Special citizens day at the National Peanut festival. Unfortunately all the fun was cancelled bc it rained early in the morning and there was no plan B or C for all the kids bussed in. But Mac enjoyed the giant Pnuts and sprite I bought him. 

Fall Festival

Macsen had fun at his school's fall festival - though he was anxious to go run around hence his scowl in this picture. He especially liked the hay ride!

3 months post op

3 months post op and his 3 incisions look so good. No more pain in his shoulder. o more pain in his belly unless he hits his pacemaker the wrong way.

Happy Halloween!

Macsen got to participate in so many fun Halloween activities this year - something we would have never dreamed possible a few months ago! He went on a field trip to a farm with his class mates. It was a strangely hot day and he suffered in the 90 degree heat but he still got to pick his own pumpkin, go on a wagon ride, and learn how to milk a cow. His teacher and staff at his school are wonderful and had ice water and a pull wagon ready for when he needed it.
He also went to his sisters fall festival at their school and played all those nostalgic fall fest games I remember - fishing over a shower curtain - a tug telling you your empty clip was now holding a bag of candy; bowling, ring toss, and the cake walk. He went on another wagon ride with his dad and played in the bouncy house.
We also went to Spooky in the Park - an annual Halloween celebration in Enterprise - with free inflatables and a costume contest. He did his best - and charmed the heck out of everyone with his Spiderman impersonations. His sisters won for their original costumes and shared the spoils with him.
And then he got to trick or treat. We carried him almost all night - he was so tired after a full day at school- but he was so sweet. Every house we went to he would find something to compliment " I like your pumpkin!" The neighborhood we visited was wonderful and had a hospitality tent of sorts with water and Gatorade, goodies and corn dogs. He loves corndogs and blue Gatorade so he was in heaven.
When we got home he went through his bag and gave most of his candy away to his sisters or to help refill the bowl outside for other children. He only wanted to keep the kit kats.

Headed home!

So we weren't admitted. The ER department consulted with the transplant team. They ran some labs and miraculously despite the vomiting his BNP and kidney function look improved from this past Monday when they looked awful. He had a fever during that appointment and was feeling crummy. They almost admitted him then. They felt confident discharging him from the Er around 11 pm bc we had a room at the Ronald McDonald house - literally right next door to the hospital. 

We are  thankful to be headed home. We are coming back up in 10 days for follow up. So much traveling - we are all exhausted. Praying we have no storm damage and praying for all the families who lost everything in this storm.We are hearing Panama City and our favorite vacation beaches - cape San Blas and Port St.Joe were a direct hit. 

In the Er in Birmingham

We made it safely - phew what a ride! We are still in the emergency department. He just had an Iv placed for fluids. He did so well - my little trooper only cried while they were placing it and said “yay” when he realized it worked the first time. He made sure to tell them to try his left arm first since he is right handed. At 6 he is a better advocate for himself then most adults. I think they are going to admit us but still not sure. It’s going to be a late night either way. He’s so chatty and in good spirits. Thank you everyone for the prayers ❤️

Driving to the ER during a hurricane is not for the faint of heart

On our way to Birmingham. Mac’s team felt the local Er would just send him to them via ambulance and coordinating that would take hours so we decided to drive him up. The hurricane is on its way and we couldn’t afford to delay. Thank you to Natascha for agreeing to check on our cats and to Roberta for keeping Hiro. Praying it’s a short stay for some Iv fluids and we will be home by the weekend. Praying the drive up is uneventful and praying our house is ok during the storm. We are hitting some strong winds and rain but hopefully we’ll be out of the storm soon

Macsen is sick

Macsen isn’t keeping anything down. We are bringing him to the er in Birmingham to avoid a traumatic ambulance ride. Trying to find someone to take our dog Hiro with Hurricane Michael bearing down.  Worst.Timing. Ever

Ugh - crummy labs make me feel sick

Alexandra Miller

Admin · October 9 · tagAdd Topics

I talked to the clinic. While Mac’s echo does look better which is great news his labs look much worse. His bnp went from 2236 to almost 2900. His creatinine and BUN are also significantly higher. Some of this could be explained by his illness but his team wants us back in Birmingham in 2 weeks for more testing. I’m trying really really hard to stay positive and focus on the good news but the bad news is overwhelming me. To cheer us up here is a cute pic of Macsen on the train at the zoo - look at that happy face. So grateful the Ronald McDonald house can get us into the Zoo for free and we were able to visit on our way home from his appointment yesterday. 

Gown up - having a fever in the transplant clinic requires planning

Mac started a fever yesterday right before we got to Birmingham 😞 The transplant clinic still wanted us to bring him in for his appointment so everyone is gowned up and wearing masks and gloves to examine him. I am praying it is just a virus and everything else looks good and we don’t need to be admitted. Seriously need a break from some of this stress

Ugh oh - Bubs is not feeling great

Sweet Mackie is not feeling great today. He has an appointment Monday morning with the transplant clinic in Birmingham. We didn’t get into the Ronald McDonald house so had to get a hotel but made the best of it. The kids swam and we ordered pizza. Trying to extract a little joy out of the kids fall break - the past week, month, 10 months, has been so tough a little joy In was in order. Thankful for Aunti Gabrielle for funding this hospital trip - love you ❤️

When your house floods

So today we are staying in a hotel. Our house ac condenser pump went out while we were in Boston and flooded parts of 3 rooms. Today the crew finished scraping the old floor up and started gluing the new one and the chemicals were too intense for us to stay in the house. The kids said it smelled like being trapped in a nail polish remover bottle. It gave me a headache, made my eyes water and made me nauseous and I was afraid it would be too much for Mac. We packed a bag, put dinner away (cooking in the crockpot) and went to a hotel. Hopefully it won’t be for long and out new floors will be beautiful. Poor Mackie was worn out after a full day at school and the excitement of staying in a hotel - he fell asleep in his clothes

Macsen is 6!!!

We had such a fun trip to Gulf state park for Macsen’s birthday ❤️ We love that place - the beach, the pool and miles of bike trails. He loves Lambert’s restaurant - their thrown rolls and endless fried okra- so we ate there for lunch Saturday. Other birthday requests we were able to fulfill - night crab hunting, soggy nachos by the pool,bike rides, kids "champagne" and  ice cream cake (he was not a fan of the cake lol.) We saw 2 snakes - one slithered over his sisters foot in the shower 😳 I feel so blessed we were able to celebrate his 6th birthday together doing things we love. 6 years ago we weren't sure if we would get a moment to hold him, if we would ever hear his voice or know his favorite color. If we would ever know if he was a cuddler or preferred his space (he is entirely the former.) We have had 6 precious years full of firsts, full of miracles, full of prayers and tears and fear and stress and magic and love. Every moment so much more precious because we never knew if we would have any time with him and conscious that we don't want to forget anything because memories of these moments may have to  sustain us if he leaves us too soon. 

First day of Kindergarten

Macsen’s first day of kindergarten! He woke up at 6:30, sat up and said “What’s today? Monday? First day of school day?” He ate a big bowl of curry and rice (his food of choice for the past few weeks) and was ready to go. We are starting off slow to see how well he tolerates it.
Update : He did really well and came home singing " skinny ma rink a dink ee doo." I think it's going to be a good year  

Macsen met his classmates

Mac’s fever never came back last night and he slept pretty well with no other symptoms. Maybe he was just exhausted from his Birmingham appointments?
He picked out his outfit - he really wanted to wear his Lightning tie from Lisa and Cemaia ❤️ And he made it to school to have his picture taken and meet his classmates. He only lasted about an hour before he said he was “ezzausted” but hopefully his stamina will increase as he settles into their routine. I meet tomorrow to help hash out the particulars of him going to back to school officially.

Time for some cheering up

We all needed some cheering up before heading home so we went for a walk to the McWane Science center. The kids love this place

Transplant clinic appointment today

Mac is not happy we aren’t done yet 😞 Transplant clinic is over and now we are on to pacemaker check and X-ray. I am feeling so discouraged that his labs looked worse and his doctor felt we need to list him for transplant soon. I was hoping for improvements and wasn’t expecting him to be worse then his appointment a few weeks ago.

Love being home

We are loving being home and being able to do all the normal, happy, family things we missed. Mac lost his 2nd tooth this morning after church. He went to his sister’s birthday party at a trampoline park. I was so worried he wouldn’t be able to participate and would get upset but he jumped a little, rested a lot lol. He’s pretty good at listening to his body and stopping when his heart has had enough. I feel he is calming down emotionally. He still freaks out often but not as much and he calms down faster.. He’s sleeping a little better, eating a little better. His blood work came back and looks a little improved. Everything is baby steps with this new pacemaker - it will take time to see improvement which can be frustrating if we were expecting big changes right away like after his other surgeries. 

We are blessed in so many ways - every day with Macsen is a blessing. I don’t think any of his Boston doctors felt confident Macsen would survive this last surgery. They went back and forth on whether it was the right thing to put him through. There was such a solemness before they took him back - not the confidence we were used to seeing with his other scheduled surgeries. They visibly looked surprised, relieved and amazed he did as well as he did. That’s such a hard thing to recognize in your child’s doctors faces - disbelief that they have survived. We continue to pray his heart failure improves and that we won’t have put him on the transplant list.

Warrior Beads of Courage

Macsen is a Warrior.  I know this because I have seen him handle some of life’s most ridiculous challenges with grace and courage.  I have seen him shrug off what would bring some adults I know to their knees.  He is a warrior, and a survivor.  They are home now, trying to take it one day at a time, and redefine “normal.” They amaze me every day.


Recently, my sister posted this picture of Macsen with his string of beads from the organization, Beads of Courage.  My sister said, “Every one of these beads is something hard - a blood draw, an Iv placement, a surgery, a sedation, an echo, ekg, chest tube removal, getting up and walking for the first time after surgery, on and on. And these don’t even represent half of it - often one bead represents many of the same procedures.”

Post op appointment

Mac did great during his appointment today. His pacemaker interrogation went ok. The machines are still double sensing so sometimes it looks like his heart rate is super fast (tachycardia) but it’s not really. But the electrophysiology doctor was concerned. Apparently Boston and Birmingham arent talking to each other yet so I have some emails and phone calls to make. 

We are still waiting on lab results but some are back - his uric acid is still on the high side so we won’t be cutting out the med that helps with that. And his BNP is back already - it was over 3000 while we were in Boston and is now 1700. Still very high - normal is 0-100- but much better than 3000.
His doctor wants him to recover for 3 more weeks before going back to school.
This is his prize/bribe for being such a good boy today - a suction cup crossbow he loved at the hospital camp.

ses included!

Happier at home

Mac is happy to be home. He’s playing with all his toys he hasn’t seen in a month and is just happy to have some alone time in his room. 
He is not eating well - he says he’s hungry but nothing sounds appetizing and we make him several things he thinks he wants but then doesn’t eat. 

He’s still really struggling emotionally - he has breakdowns constantly over things that never used to bother him. He screams and can’t tolerate teasing of any kind or being reprimanded - he falls apart. He’s still having shoulder pain but it seems to be better. We haven’t had to give him Motrin in 3 days. But I wonder if his general crankiness is bc he is still in pain. We see his chiropractor Monday who I hope can help.
Tomorrow we have a post op appointment in Birmingham. They want all the usual stuff - blood draws and X-ray and echo and also check out his new pacemaker. It will be a big day. I hope they can give us a plan for when we should try to get him in school. He is not really better then before surgery - he’s still in extreme heart failure and he is very medically and emotionally fragile. But he also loves school and I want him to live his life, I want him to have these experiences like other kids.