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Tuesday, February 4, 2025

3am update (Mom & Dad shift change)

Quick MRI came back unremarkable ❤️

EG continues to also be unremarkable, but he did have a dose of Kepura at about 11 so continuing to monitor. PICU team has been amazing! ❤️🙏

Tuesday, February 4, 2025

Part 1:

The morning took a turn. Dr Lew came in and wasn't happy with a portion of his MRI and the air pressure build up on the front of his skull. Green shoes pre-MRI and red shows last night. We are moving to OR for another drain to be put in for the air pressure. He is back in the OR now ❤️

Part 2:

It took a while to get a room, but he went down to MRI at about 1pm. He stayed sedated so he was ready to go.

Definitely tough to see him like this and we haven't seen him awake since Monday morning. Hoping for a smooth wakeup this afternoon ❤️

Part 3:

He came out of his anesthesia well, removed his breathing tube, and we got a few little eyes and squeezes before he fell asleep again. There were no changes on the MRI so that is good news. It's all trying to find its home again in the big open space.

But we did hear back from oncology/pathology, and it does look like ATRT, which has been our biggest fear. ATRT is a rare tumor (<100 cases each year in the US) and believed to be created at birth through a mutation. Prognosis is not great, but some pluses for him is that the surgeon said there was nothing left behind, the tumor itself does not appear to be metastatic, and his spinal MRI was clear as well.

He's really going to have to fight. He's going to need chemotherapy for at least 6 months, maybe radiation. All of this will be determined once they have a subtype of the tumor.

Continued prayers for strength for all of us ❤️🙏

Pathology Diagnosis determined it to be a very rare and aggressive AT/RT type pediatric cancer with less than 100 cases a year.

Wednesday, February 5, 2025

9AM Update - Liam had a restful night. He got a little bit of a fever that was treated. His foot IV ended up infiltrating, so he had a quick few shots and heat to get the swelling down.

Mimi (Marilyn Steudle) stayed the night so Mom and Dad could crash. First full(ish) sleep in a while. ❤️

Moving and kicking his legs this morning. Got him to stay up a little bit to watch a few minutes of Daniel Tiger ❤️. He was kicking his feet to try and touch the screen. Hoping for the Catheter, EG and Breathing tube all to come out today.

Thursday, February 6, 2025

We met our goals yesterday!

Woke up, EEG off, Ventilator off, Cath off, Sodium stabilized and started eating through his NG!

We are moving to short term daily goals to work through this with him and keep our strength as parents with the long-term being unknown. Cherishing every snuggle with our little warrior!

He has been moving his legs much more and kicking off his blankets like his usual past self. He gave us a few hours of open eye time and a couple of little mumbles. But his throat is definitely still irritated from being intubated for surgery.

Last night I cuddled with him; he started moving his arms more and at one point he attempted to roll his whole body towards me ❤️.

Today's plan is to get our blood pressure meds off IV and to oral so we can leave the PICU and recover upstairs. He will also have his first PT visit to start moving around a little more.

Our nursing staff here in PICU have been outstanding and constantly fussing over every little thing for him, making him a door sign, and finding an adorable tie blanket from the local church.

Staying strong❤️💪

Thursday, February 6, 2025

Today has been a good day! He has been up for most of his normal schedule, so we got to see how beautiful blue eyes more ❤️. The morning was full of OT, PT, and speech evaluations followed by a nice nap. He got a little sponge bath, lost the nose O2 tube, up to full NG feeding dose, rolled over once, and was allowed to have his binky back. Definitely a happy boy! Watching some slow Hey Bear to work on our eye tracking skills again!

He will have another sedated MRI in the next few days to continue to monitor his pressures with everything, finding it's home again up there now that the squatter tumor is gone.

Mama got a chance to sneak home and see Miss Lilly and Dad is taking her Swimming tonight to make sure she is feeling the love as well ❤️

Warrior Liam is fighting the fight!

Our little warrior! ❤️💪

Friday, February 7, 2025

Boy did this little guy have an eventful night...his little legs kept kicking and he was DETERMINED to get that blood pressure cuff off 😆. Naturally spiking his heart rate up to 180+ and freaking out the nurses. He finally settled down around 3am 🤦...and snoozed until about 8.

Today he moved to a bolus-based feed to mimic our normal eating cycles and is doing well on that. He halved his IV BP meds and moved towards oral transition and it's going well so far.... Once we are off of this, we can leave the PICU and get rid of more lines (Artery line, BP cuff continuous read, and heart rate continuous read)

He sat up with PT/OT and we attempted to put a spoon in his mouth with Speech.

Essentially with posterior fossa syndrome he has to relearn all these skills since many of those neurological pathways crossed through the tumor and were disrupted...so now we need to create new pathways! it's like we have a new baby learning tummy time (neck/head control), and reteaching foods.

Eric and I got a lot of information from psychology (checking in on us too) and our oncologist on a few different paths to take for next steps. Definitely still a hard one to hear but feeling a little more confident in the protocols coming from the top hospitals & researchers.

As a plus he flashed those beautiful blues to us most of the day which makes my heart sing. 💙

Sunday, February 9, 2025

The last two days have been continued progress overall...however he seems to have his days and nights mixed up 🫠. His legs are working so hard and he's excited about the movement that prevents him from falling asleep. The last three nights he stayed up until about 3am before crashing. Each night he has moved more of his body. Last night he was able to roll over on his belly a couple times before finally passing out. He also had an additional stitch put in his first drain site as his head has shrunk so much from the excessive fluid that the skin stretched. Woohoo!

While we have seen much progress, it is heartbreaking seeing him in there and struggling to verbalize/move, leading to bouts of frustration fits or a single tear drop rolling down. That absolutely broke me.

Today Mom and Dad snuck out in the morning with Lilly to explore the Milwaukee Domes, train exhibit, and meander target to give her and us some normalcy.

Monday, February 10, 2025

Lots of visits today being Monday! PT, OT, Speech/Eating, Social work, Neurology, and the list goes on and on.

He made awesome strides over the weekend with his gross motor skills development and even gave a few finger squeezes this morning. A few toys he's started to reach for on occasion.... mostly to knock out of his way. His eyes are starting to track more; still jumpy but moving a little.

With speech he started taking the tiniest sips of water through his lips. Teeth still clenched closed but will start to open a little bit for his binky when prompted.

He will even recoil when Eric does the jaws theme (historically, this meant tickles we're coming)!

The biggest plus of the day, we lost a TON of wires and moved out of the PICU and back up to floor 7! It is much more peaceful up here, so we are all hoping for some great rest tonight.

His one right EVD (external ventricle drain) is still leaking a little bit, so they took his tolerance back down to reduce the "pressure challenge" they were pushing to eventually remove the drains.

Loads of progress and steps forward!

Dad went home for a much-deserved night at home and some Lilly swim lessons! ❤️

Tuesday, February 11, 2025

Liam slept VERY well back up on the quiet 7th floor. At 5am he wheeled down for a quick brain MRI to check out his levels and ultimately had his EVD pulled and stitched up this morning! So now he only has a subdural drain in place on his head ❤️.

He had speech, OT, PT and did very well for all of them! Got to try using a sippy cup again (success) and opened his mouth up himself for his binky. 💪 He continues to rebuild muscle memories and is starting to hold his trunk and head more.

After Lilly's ear appt in the hospital (Uber convenient) we snuck her up to see her brother. He immediately started kicking and moving his head back and forth for her. Anyone know where I can get a "therapy dog vest* for a toddler?? Just kidding.

We checked ourselves Into the Ronald McDonald house connected to the hospital for the next few nights with the upcoming snowstorm. Lilly is staying with us too! I am extremely impressed with their services and how accommodating everyone is. Definitely a little more homey than the hospital beds. ❤️

Thursday, February 13, 2025

Yesterday had lots of CSF leaks everywhere and troubleshooting on where it's coming from. Ultimately, we decided to give his hair a bedside bath to get rid of anything sitting on his head. Boy did that stinky guy need it! Good news was no leaks after through the night! Wednesday he was pretty tired from being up at night, so the focus was on rest.

Today he woke up at 6 to be wheeled away for another quick MRI to track his pressure progress. We did a lot of therapy on our own for speech and muscle movements 💪.

11:30 marked speech time and it was DAIRY day! He quickly took to drinking small sips of the milk from a cup and little bites of yogurt (Thanks Reed City, MI Yoplait Team!!). He was definitely a happy boy afterwards! Off for a snooze now! ❤️

Saturday, February 15, 2025

Lots of focus on rest and rehab these last few days. He's moved onto trying more purees to see if any of them spark reactions. Carrots....little dude still hates them. BUT he turned his head away and put his hand up to push it away which is amazing!! Chicken broth was a hard no. Pureed Mac and cheese had a little success.

He's also been put through daddy's hospital gym routine with moving all his body to wake those muscles up.

The big event of the day was getting his subdural drain taken out. So, the only thing on right now is his NG tube and IV port (in case of emergencies).

They're monitoring how he does tonight and then will go in for a quick MRI in the morning to check progress. If fluid is building up, he will have a shunt put in tomorrow.

Sunday, February 16, 2025

Rough night for Mr. Liam. He was very restless from 7-11pm and then suddenly started puking at midnight and often requiring full bedding changes until the morning.

This morning, he went for a quick MRI (was already scheduled) and they found continued pressure on the subdural portion of his brain putting pressure (yet again) against his brain. Dr Lew was on today and immediately booked him up in the OR at 12 today to have a shunt placed. He said a considerable pressure release happened when they made the incision which solidified their plan to continue.

We are currently awaiting his return from the recovery area, but surgery did go well! ❤️🙏

Monday, February 17, 2025

A bit delayed here but we were soaking in all the great moments yesterday!

Liam's shunt surgery went very well...and he came out a completely different baby boy. His motions were more controlled, eyes moving all over the place together, and his muscles and face had less tension. He ended up falling asleep 6pm-6am!! Much needed rest!

Today he was at "Daddy's boot camp" all morning with PT/OT and speech...and got on the mat to play with toys. He even gave us a little wave 👋.

It's sounding like his next procedure will be Thursday with a lot of small procedures in one event. All of these items will help make administering chemo much easier on his little body with less needle sticks.

Here's to continuing to get stronger every day. ❤️🙏 He's one tough tiger! 🐯


Wednesday, February 19, 2025

Lots of continued OT, PT and speech these last few days. He is gaining considerable muscle tone and much better head coordination! Yesterday PT had him sitting in a little chair and he kept pulling his leg up to cross it. Today PT had him on the floor doing pushups! 😆

For speech, Nana Janshego would be proud, the food that he actually opened his mouth for first, chicken gravy.

Late tonight we got him into the big tub for one last good bath before his procedures Thursday morning. He hated every single minute of it, which was completely normal for him. BUT he was squirming and vocalizing! After we went for a little stroll around the floor, watched the interactive TV, flirted with the nurses (they all adore his big blue eyes), and had some food before passing out in the rocking chair with mama ❤️.

Surgery starts early tomorrow at 7:30. Praying for continued strength for all of us and for a speedy recovery.

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