Monday, August 15, 2016

Love, Time, and Family can Heal: Update about Carlisle

Hi everyone! Been idle for the past four months - and I so missed blogging! Let me update you guys about ze cranio kid's health. :)

Here's how Carlisle looked like sometime December last year when we were still confined due to ommaya shunt infection. Yes - it got infected for I-still-don't-know-what-reason. Doctors said he would be really prone to infection because of (1) uncontrollable bacteria and virus and (2) we do aspiration at the hospital.

Looking back last year...

We were confined for three months (October-December) due to ommaya shunt infection. He had on and off fever back then and all his laboratory results turned out to be just fine. It was when his doctors decided to have the fluid being drained from his ommaya be checked - and it turned out that it is indeed infected. The original plan is to have him under antibiotics for at least 10 weeks and go to another surgery to remove the shunt. We underwent Meropenem (a kind of antibiotic which should best kill the bacteria found) for more than 10 weeks, had MRI for surgery planning, and out for surgery. The MRI turned out that he had an abscess on his brain due to the infection, a swollen area within body tissue, containing an accumulation of pus which needs to be removed as soon as possible. It was really a long wait for the schedule of the surgery and Carlisle just sits there waiting and annoying his wardmates because he gets noisy when everyone is sleeping (he's awake most of the time when the sun is out and sleeps all day long) so his doctors and I decided to go home since it is already Christmas time by then and just go back once they already have a schedule for the surgery. We went home December 23rd and spent Christmas at home. Carlisle was goofy as ever and it was indeed one of the best Christmas I spent in my entire life. Knowing Carlisle is not okay yet did not spoil the celebration - we're just thankful that we get to spend the holidays with the family.

With Dras. Go and Hernandez. Thank you for the Christmas cap gift, Dra. Go! :)
Dra. Hazel Hernandez, Dra. Sheryl Wong, Carlisle, Dra. Tiffany Go, Dra. Aileen Guerzon
With the Pedia nurses! They love Carlisle so much! <3
The goofy babe :D
He doesn't want to take pictures with anyone - ikaw ang kailangang tumayming para
makuha mo yung
picture ng nakasmile siya.
New Year 2016! :)
Hahahahaha pagoda ang baby!

Carlisle with his cousins. :)
So holidays happily passed with the family. Carlisle got to play well with his cousins, I can see in his eyes that he was really happy even when they always bug him in his sleep.

We underwent constant follow-up checks every now and then while we're out of the hospital to monitor Carlisle's progress because of the abscess on his brain. Because of a tight budget and sudden things that we need to accomplish and buy for him like medicines, milk and all, also because I'm the only one spending for us two, the money we saved for the surgery were also used.

By mid February, Carlisle started to get ill again. He had cough and colds, then we started nebulizing again because that's the most effective way to get away with his cough. He can't do well with cough syrups - unless it's dry cough. It will subside, after a week or two, it was back again. On check ups they only gave us the same medications because there's nothing wrong with him except for the cough a and colds.

Other than that, he remains to be happy and jolly and cute and bubbly despite all these complications he's receiving from the monster tumor.

By early March, Carlisle started to get weak again. Cough and colds never left him. Maybe for a day or two, but not totally. Now it came with fever and everything got affected again - the amount of liquid that he pees, his sodium level, which are very critical. We decided to be confined at a hospital near our place where we usually go if he's not that kind of ill.

We ended up staying at the hospital for almost a week - turned out the diagnosis was AGE (Acute Gastroenteritis). He's as jolly as ever when we got discharged, though I noticed that he became as weak as he can't sit by himself any longer.

By this time I have decided to stop his physical therapy sessions for the meantime since it came from the doctors themselves that he's having a hard time coping up because of the infection on his brain. To cut off our expenses, even if I want to pursue and help him, I decided to let him do the exercises at home for now.

Weeks have passed, though he's not as energetic as he was before - he lost his head control, he can't even sit by himself, he won't talk as loud as before (back to hums and moans) - we got to celebrate his fourth birthday at home! Hooray!

Too grumpy for a picture!! Manang mana ka talaga sa pinagmanahan mo! Hahahahahaha!
I'm just too thankful to our Lord that He never leaves us in times like this. For this year, Carlisle had only been in the hospital for confinement ONCE. Isn't that amazing? With the grace of the Lord and Padre Pio's help, we were able to manage his needs and let him stay as healthy as he can be.

I get to document these milestones - the times that we get confined due to a certain condition. The only time that I got confined was when I'm about to give birth to Carlisle because I rarely get sick, and I can't even imagine that all my fears will be passed on and experienced by my child.

All of these hospital stays that some were considered as "vacation" were conquered and survived through the help of all the people around us. Carlisle keeps on fighting and smiling because of all of us.

My big boy enjoying the bed weather! :) Nakakahawa yang pagkaantok mo mahal, ah!
By the end of the month, we're about to undergo another CT Scan to check the status of his infected shunt and how the abscess is doing. Hopefully they won't do another surgery on him yet I doubt since it is one of their protocols to change something if it is infected.

With God's love and grace, I know everything will come His way. Everything will be fine. Carlisle will be fine enough.


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  1. He looks like a jolly, happy kid! I pray for your strength and faith as you go through these tough times.


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