Mighty Max Fights

Max just went back for his stretch, scope and g-tube removal!

Today we spend most of the day at the hospital for a swallow study and a meeting with the aerodigestive team. For the very first time in Max's life he has a swallow study with no stickies or aspirations! This is the first swallow study since the ARSA was mobilized and reimplanted in the appropriate place!

Despite the hurdles VACTERLS has thrown at us this fall Max played soccer this season and had a blast! Today was his last game and it was a great one, a spectacular way to start what will be a long medical week for him. I'm so proud to get to be mom to this amazing little human.

We've been awake for an hour crying in pain. Meds have finally kicked in and he's just settled enough to try and sleep. He cried most of the time he was awake. Tonight our non med coping mechanisms didn't work.

We have had lots of extra walking and running the past few days and Max told me he thinks he needs a rest bc everything hurts.

I wish his little 8 year old ADHD brain would let him do just that.

These days are hard... with illness and pain he's had to be kept from doing many things he wants to do over the last few weeks, for his safety and that of others. He's angry at me when I have to help him remember to take it easy, and sometimes make him even though he doesn't want to. Sleep comes easily sometimes but doesn't ever seem to last the night lately.

I wish I could find the way to face every day with bright energy and a smile like Max.

I wish I could be as Mighty.

-signed one tired mamma

Today we're resting. Pneumonia is still kicking his butt. We finished our antibiotics but the fever is still there and the coughing up junk. He's very very tired and content to just chill in bed which is unlike my little guy. Hoping the next 24 hours shows some improvements.

There's been a lot of stuff going on with Mighty Max. Trying to wrap my head around all of it and figure out what the plan is to get things fixed and rolling in the right direction. Right now we're here getting a breathing treatment and waiting to find out if it's a double pneumonia or something else. Wooo.

Edited to add

It is pneumonia. Antibiotics begin and nebulizer treatments every 4 hours.

Pig Bowl is pleased to announce all three recipients for the 2024 Pig Bowl!!

Pig Bowl is scheduled for Saturday September 28th at 7 pm! Gates open at 6!

Keep an eye out on our page for updates as the big day approaches!

It's been a rough night for Mighty Max. Our power went out and the boys were in a dark room and got really scared. Then a fire from lightning 7 miles from our house (is out now) lightning strike close to our house and now we're up with bad leg pain for the past 2 hours. 45 minute massage with magnesium lotion, 45 minute Epsom bath, Tylenol and motrin and we're finally feeling a little better (the pain is still there strong but he's strong enough for it he says) .... we're sitting here watching Meg 2 waiting to fall back asleep (this is a nightly ritual.... the kiddo really likes sharks lol. His trusty guardian Blue has been on alert this whole time until just now when we laid back down to fall asleep. Now she's asleep at his feet, avoiding laying on his legs which she always seems to know and avoid laying on them on nights they're hurting.

He's out and doing great! Back to room air saturating ok. Lots of secretions in his lungs that were suctioned out during the procedure.

O2 sats a little lower than they wanted this morning so albuterol nebulizer before they got started. Procedure started at 12:09 ... 90 minutes to 2 hours to wait now.

Off to OHSU!

Motherhood and caregiving are not the same thing.

You won’t convince me otherwise.

Yes, we are caregivers because we are mothers but the roles are not the same.

Not even close.

They co-exist.

They are deeply intertwined.

But they are not comparable.

Being a good caregiver, one who puts their heart and soul and devotion into their child’s medical needs depends on the love and strength of a mother.

Being a mother is what keeps you going through the hardest days and pushes you through the sleepless nights.

A mothers love for their child makes sleeping in an emergency room make sense,

And when the caregiving responsibilities feel too heavy, a mothers strength can manage to make them feel weightless.

Being a mom and a caregiver are not the same.

But I couldn’t be one without the other.

Written by: Carla Moore from Payton's Path
**Re-sharing for National Caregivers day ♥️

Waiting to meet with our aerodigestive team. Max's breathing/allegies/ stomach have been messed up lately. Hoping we can get some things rolling to deal with that.

Also, this kid ran a hole into his shoes!

3am leg pain that takes over an hour to get under control was not on my bingo card for the night before a big walking field trip for Mighty Max. Tylenol, motrin, Epsom bath and eventually even heavier pain meds needed to get it to stop hurting. Allergies have also been a beast this year and breathing has been a struggle for all 3 boys this spring but Max especially as his tracheo-bronchomalacia makes it hard for him to clear mucous and congestion.

Finally have him laying back down and as comfortable as possible.

Hopefully there's enough time to get in another cat nap before work.

The sky is dancing tonight!

Chicken strips for lunch before we have physical therapy with Brita!

Iron infusion number 3 is started. Today we found the sweet spot with the sedative and Max didn't cry, he didn't even flinch or make a sound, he just calmly watched them poke while he breathed through it. It was an astounding experience and the IV nurse joked that Max should come teach her adult patients how it's done. Now he's taking a nap while the iron runs.

It's 406am... I've been up since 235 with Maximus with leg pain bad enough to wake him up and bring tears. We've taken a hot epsom bath and some motrin, and applied magnesium lotion to his legs. His tube was suctioning into his stomach meaning he needed something to eat before being able to lay back down and rest comfortably, so now we're eating toast with cinnamon honey butter. Hoping he falls back asleep quickly after this. As a chronic pain person myself, I am in a flare and it was 1am before I finally fell asleep despite laying down at 10pm to do so.

Chronic pain is a monster stealing our nights lately and this mamma is tired. Wishing your all good rest and sweet dreams.

We have another infusion this week, hopefully that'll be the last one we need for a while!

Join an army of caregivers giving just $1 dollar a month to Pay It Forward.

Mighty Max the Monkey King

Infusion's all done for today. Time for Pain PT with Brita!

Waiting for the IV team for infusion.