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