Jameson: A Cavernoma Journey

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Jameson: A Cavernoma Journey

Jameson was diagnosed with a cavernous malformation at the age of 8 weeks following an MRI after extensive medical problems from 3 weeks old.

12/04/2021

Pray to God with my arms open
If this is it, then I feel hopeless
And I wish I could help

L temporal craniotomy for resection of brain lesion/seizure focus. They just took him back.

Anticipating a blood transfusion and hoping they can remove his breathing tube and get him off the ventilator shortly after surgery but with his size sometimes that isn’t possible right away. Now we wait 3.5-4 hours and pray all goes well.

09/04/2021

Jameson had his pre-op appointment today at Boston Children’s, took a very long time. Surgery is a go for Monday, we talked about the incision and them removing this “thing” in his brain that’s bled. We did lab work and went through a very extensive list of questions and a complete medical history for him. This was our last appointment until surgery, then Monday i have to physically hand our baby over to them to go cut in his brain. We have to sit there with empty arms and wait. We’re soaking him all up with the time we have left before this nightmare continues.

24/03/2021

We have a date 🧠
April 12 is the big day. We will have our first consult tomorrow about what they want to do because as of right now we don’t even know why the OR is booked for him. I really hate that Boston Children’s handled it this way, it’s all been very upsetting. For a hospital that’s so good, they told us our son was booked for the OR for brain surgery but for 6 days as of appointment date haven’t told us why.

21/03/2021

We got our second opinion at Boston Children’s Hospital. They indicated to us that they would like to do brain surgery this week or next week to remove “it”, we still don’t know what it is.
We have a lengthy discussion Monday about it all, a lot to talk about and decide on, and lots of outpatient appointments. We are home for now

21/03/2021

March 17 2018
Happy St Patrick’s Day!
Rocking his green shirt 💚 🍀

21/03/2021

March 16/17 2021

He got an EEG again to see if anything’s changed as far as being able to pick it up, it’s too deep so again they didn’t get anything.

they’ve taken him off breastmilk and onto a formula that’s thick like stroke patients (he’s got blood on the brain so they’re managing him as if he were a stroke pt), OT came, PT came, speech language came to witness his feeding/choking, tried to safely find a way for him to take his meds because he chokes on those too, his neuro team all talked and it’s just going to take time and more imaging.

Still no concrete dx which is terrible but the concern for a hemorrhagic neoplasm of some sort is back up at the top of the differential again.
His impedance probe that went down his nose into his belly (shown here) showed that his reflux was pretty bad but it was also acidic which is strange because he’s already on Pepsid. So they put him on something else.

He had a fever of 101.3 and they did a uti check and it was neg and his fever has went away for now. He did have immunizations so we hike that’s all it was.

Battling constipation with all the new meds and formula and stuff but it all started with the mri contrast so that’s played a small part in his spit up increasing.

Checked for milk protein allergies just to see if maybe he needs something different all together but that was negative as well.

We’re home for now.

14/03/2021

March 12 2021
Update: morning meds, choked, desat to 81% blue not breathing again and nurse has to blow in his face to try and get him out of it.

We have not had a good day or a good night.
A quick tube placement ended up taking over an hour and was seriously horrible. He was crying to the point his hair was wet and his ears had tears pooled in them. Then while feeding tonight he choked and stopped breathing, desat to 83% and remained blue for over an hour. And we still have blood work to get drawn tonight. Poor sweet baby 💔

14/03/2021

March 11 2021

look who woke up 😍 and laughed

14/03/2021

March 11 2021

We came back last night and Jameson got his first ambulance ride. He had a choking episode but this time he wasn’t feeding, just sitting up awake then was drooling. Right side body weakness also so his neuro said to get him back here. 5th mri last night showed no new bleeding at a quick glance but we’ll see more today what we’re doing once they figure it out. Gave him more kepra last night and he was so much better but now he’s sleeping again and hard to wake so he may be having seizures mixed with Kepra sleepiness from the dose change. We’ll see what today brings

14/03/2021

March 6 2021

Heading home, there’s nothing we can do inpatient at this point, his brain bleeding has been stopped for at least a week and we have a million dr appointments with a ton of specialists, future MRIs, genetic testing, hematology/oncology, and another arterial blood draw.

They’re still leaning towards cavernous malformation/cavernoma as they can’t yet see the bottom due to old blood still being there (it’s reabsorbing). A cavernous malformation or cavernoma is a low pressure abnormal vessel junction in the brain that’s there for the rest of his life that’s prone to leaking. So he’s going home on Kepra, which has stopped the seizures from the blood/inflammation, and significantly improved his feedings choking episodes; we found a bottle we can use after trialing 4 different ones with the speech language pathologist. It’s the disposable hospital ni***es 🙃 so we are having to buythose now. There’s a few more we’re going to trial but so far nothing yet.

14/03/2021

March 4 2021

Update on his left temporal lobe lesion measuring 7 mm plus another unknown “thing” 3mm.
Waiting mri results and getting an artery blood draw today and hopefully his urine comes back it’s been several days already.

🧠 4th MRI results: Jameson got his 4th MRI last night around 11Pm instead of sometime today. he got bumped up after having more seizure activity suddenly even with Kepra on board. We’re still waiting on MRI results from that:
• bleeding has increased/decreased
• anything gotten bigger/smaller
• ? able to visualize what’s been under the blood

Things in his diagnosis differential include or in combination:

Vascular lesions:
•Arteriovenous malformation
• Cavernoma
• (or have both, one adjacent from the other)

Bleeding:
•small left PCA branch artery

Neoplasm/tumor/cancer
•some calcification/mineralization of some sort
• cortically-based hemorrhagic neoplasm
• dural based neoplasm
• neuroblastoma (💔😭 it just can’t be)
• could be any slew of tumors and or cancer

🩸 bloodwork, his arterial blood draw
They feel that maybe he has a clotting or blood disorder that’s not helping
• nucleated red blood cells are present and shouldn’t be (immature red blood cells)
• teardrop shaped red blood cells are present (and should have none) at a 1+ degree (scale of 1-4)
• he is NOT anemic so not sure why these 2 are present. These are potentially indicative of bone marrow infiltration of malignant cancer.
• Giant platelets are also present and shouldn’t be so he’s clotting very easily (platelets sticking together)

🧪 Urine
Cancers and tumors secret different hormones that are picked up in the urine. That’s what we’re waiting on to see if anything comes back present, it’s been days. We do not want any positive results from that urine report.

💭 seizures
He had a great few days seizure free but then yesterday he had at least 1 longer one characterized by unresponsive, pursed lips and eye rolls followed by 6 hours of un-wakeable deep sleep. We upped his medicine 💊

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