Tuesday, May 13, 2014

He's not doing well. It's now been 20 days that we've been watching him slip away from us. Each morning I wake up and think "I can't do this, I can't make it through another day of this" and each night I'm surprised that somehow I did. I don't know how I did.

His breathing has been very slow and very shallow and has been for days and days and days. He's skeletal, it breaks my heart to see all of his bones, his body stopped digesting food 2 weeks ago. His face, his eyes and cheeks are sunken and bluish. I cry at what MLD has done to our son. I scream at the unfairness of all of this. Our baby boy, I am so so sorry. I feel like I'm falling into a dark abyss, this is every parents' worst nightmare, and I'm living it. Most days I can't believe this is my life, staring at your own child wondering which will be his last breath. It's torture. Our chubby cheeked sweet boy that loved giving hugs and pointing at cars. We don't know how he's still hanging on. We continue to hold and cuddle and kiss him. He's holding on and we're not sure why.

Saturday, May 10, 2014

Still fighting but not fighting alone


Oliver got dressed up yesterday, along with pretty much everyone in the Bethel School System. Students and staff in all five schools went above and beyond and dedicated an entire day to our real life superhero.




Click the link below to see more photos of their superhero day. They even made NBC News! The Bethel Community continues to amaze us, their hearts are huge and their support of our family is endless.

News Story

Bethel Schools Superhero Day for Super Oliver(you don't need to sign up for flickr to view them, just click the X) The High School dressed up too, but their photos aren't on this link.



The past 2 weeks have been the longest of our lives. We've spent them holding Oliver and knowing that he may stop breathing at any moment. There have been a few times when he did stop breathing for about 20 seconds, we thought the worst, then he'd gasp and start breathing again. We stare at him, and flinch at the slightest noise or change in breathing. His breathing over the past 3 days has been even slower, sometimes as low as 5 breaths/min. Putting him down to bed each night is scary, we don't know what the night will bring. With a neurological illness like MLD everything is so hard to predict, including death. We sleep nearby, never quite asleep, always listening.

He remains very comfortable and is spending quality time with Mom, Dad and Thea. Still making each moment count.


Mom reads some new books. This one was called "Oliver's Game"






A photo canvas now hangs on the wall in the stairs to the basement(an early Mother's Day gift from Oliver and Thea)


Goodnight



Monday, May 5, 2014

No words

There are no elegant words that can be written to describe what we're going through right now.

People have been asking "How's Oliver?" and we've been saying pretty much the same thing each time, that "Oliver isn't doing well, but he's comfy." The second part is true, but the first part is understating the facts. The truth is, our son is dying. And although for two years we've known that this day would come, the time to say goodbye is here.

We've known since last week. We've been holding him, loving him, kissing, hugging, and cuddling him. These will be our last hugs and kisses. How is that possible? He only just turned 4.

Each day he has become more and more fragile, his coloring is blueish, his heart rate continues to slow, and for the past 3 days his respirations per minute have been extremely low.

But he is comfortable, and we aren't just saying that. His amazing nurses have given us such a gift. He is truly peaceful and in no way suffering.

We've told him that he can go whenever he is ready. Mommy and Daddy will miss him so very much, but it's ok to go now. We are so proud of how hard you've fought baby boy. We'll be okay, we'll take care of your little sister for you. Go run and play with the angels. We love you.

We all love you.

He's absolutely the toughest little boy we know or will ever know. Despite everything he has faced in his short time on earth he can always make anyone smile, and he blessed us with his own smiles as often as he was able. He's touched the lives of thousands and made the world a better place simply by being part of it.




- Posted using BlogPress from my iPhone

Friday, April 25, 2014

We choose to be happy

Oliver isn't doing very well. He's been fighting pneumonia since last week and he just can't seem to fight off this latest bug. He was started on an antibiotic right away, just like always. Days pass and we didn't see improvement, usually he starts to improve by Day 3. Day 3, Day 4, Day 5 pass and he's only getting worse, we need to try something else. He's so congested and his breathing is labored, not a "gasping for air" type of labor, but a drowning in his own secretions labor. We suction and suction and the grossness keeps coming back. For his sake, we have always called his secretions, "yuck yucks" As in "Oliver, I'm coming over there and I'm going to get all those yuck yucks. Okay?" He always breathes easier for a little while afterwards, then they come back. Repeat.

 We lay him on an incline for hours, he's on O2 around the clock, we sleep right next to him. He's using all his accessory muscles to help him breathe. It means he's working very very hard to get air and oxygen into his body. His lungs aren't strong enough to do it on their own, so his other muscles start to help the lungs push the diaphragm up so he can expel air. This is a bad way to breathe, the human body cannot do this for very long, it's exhausting work. Oliver is exhausted, on top of this type of breathing(called "pulling") the medicines we've been giving him to keep him comfortable make him very sleepy. He's been sleeping a lot, close to 20 hours/day, but even when he's sleeping he's struggling to breathe. 

 We start him on the second antibiotic and almost right away it starts to cause him major gastrointestinal distress, cramping, diarrhea, he was dehydrated and miserable. We stop that antibiotic. Now what? There is another option, but it's what our nurses call "a big gun" antibiotic that is even broader spectrum than the second, meaning it will likely cause even more gastro issues. It's also in the same family of antibiotics that caused him problems in the past. We ask about trying one that worked well in the past that we'd taken a break from because his body had stopped responding to it, but maybe now it would? 

Our hospice nurse says she's going to be completely honest with us, she's not so sure that the "pulling" is caused by the pneumonia. Yes, he has pneumonia, but there might be more at work here, like his tiny body is tired, and starting to give up this fight. He's been fighting for just over 2 years.

 Recently his hands and feet have been going from hot to cold, hot to cold. He's had a very rapid (133bpm) heartrate and a high fever of 102*. He's had mottlingcyanosis, Cheyne–Stokes breathingall of which are signs of someone dying. We've seen a few of these symptoms before and he's overcome them, he's rallied and gotten better. We've never seen this many symptoms all at once though. But at the same time, the mottling comes and goes, the breathing improves and worsens. His face will look rosy and pink, and then blue. It's seriously messes with us, we don't know what lays ahead, we just don't, and so we smile. 

That may sound crazy, but we smile, we laugh, we talk, we reminisce. We will have our whole lifetimes to be sad, cry and miss our beautiful blue eyed boy. A boy who has touched the lives of thousands of people, thousands of people who will hopefully learn that life is short, that life is precious, make each moment count. Every. Single. Moment.

So here we are, maybe in his last moments, maybe not, but it doesn't matter, we're not going to spend them being sad. We're holding Oliver and laughing about the time he climbed climbed on top of Pippa and tried to ride her, laughing about the time he shoved cookies into the DVD player, and thinking he was great at hide-and-seek by hiding behind a curtain with his chubby little feet sticking out the bottom. We have our whole lives to be sad, today we choose to smile and be happy.










Tuesday, January 7, 2014

catch up

I'm feeling a little guilty about not keeping up with Oliver's blog. The website sent us a 2013 reports and hundreds of people come to the blog each week to check on Oliver and we haven't written since October! Sorry team.

The thought of writing 3 months worth of recap is a bit overwhelming so I'll keep the update as short as possible and try to stay more on top of updates.

First big news, Oliver is a big brother! Thea Juliet was born a week late on 11/2. Oliver loves her and cuddles her all the time. However, he doesn't like that his once quiet house is sometimes filled with a fussy baby crying. He lets us know this by squeezing his eyes shut extra tight when she fusses too loudly for his liking. If he could still talk he'd say "Shush, shush, shush Thea!"


Next came Thanksgiving, where Ollie and Thea were hugged, kissed, held, and loved by our entire family. Our families are so important to us and seeing everyone bond with Thea and love up Ollie was wonderful.












In December Santa visited on a firetruck! (Thanks Water Witch Hose Co. #2 for delivering Santa to our door. And thanks for so much more!)

And we went to the Dream Come True Santa breakfast. Delicious and tons of fun!












We wore matching pjs



Had some smiles


And dressed like Santa


Kind...


of...


a lot..



Oliver got a really great piece of medical equipment called a Smartvest. We call it the shaky vest. Now we're using the Smartwrap because it's easier for us to get him in and out of and it doesn't agitate his gj tube. The Smartvest vibrates very quickly and in short it helps mucous from sticking to his lungs, breaks it up so he can cough it up and out!

Smart vest:


Smart Wrap


Christmas morning came and I guess the kids had been good because Santa brought lots of great toys.

Including a big squishy ball and Batman!








At Christmas with the family, much like at Thanksgiving, there were endless arms for holding and cuddling our kiddos.
















Oliver's room was Batman-ified...





And he now has a sweet Batman snuggie thanks to his Aunt Ang.


And a sweet Batman hooded towel thanks to his Uncle Steve.



His Auntie Jess and Grammy completed what has been named "Oliver's picture project" which took months and months of hard work and firetruck hunting! It's worthy of it's own post, so more on that later.

As of today(holy moly I caught up!)
we are working on getting Oliver this great bed called the Comfylift bed, it will help tremendously with his night time positioning. He's growing so tall that our current set up is no longer working for him, he's been waking up in the middle of the night moaning, all squished up at the end of his bed(because it's inclined for his breathing and feeding). Poor kid! But this new bed is just what he needs, I sure I hope his new Batman sheets will fit it!






And now you're all caught up, phew!

Saturday, October 19, 2013

Scary times

Oliver has had a very rough few days. His breathing is extremely labored and he's been on continuous oxygen since Wednesday. His circulation is poor and at times his hands and feet are ice cold with no capillary refill, a very ominous sign that things are starting to shut down. But right now they're pink and warm, so this symptom comes and goes. It's all very unpredictable, and we all know that he's one heck of a fighter.

He's only opened his eyes a few times in the past couple of days, but he's on a few medicines to increase his comfort, and they make him tired too. We haven't given up hope that he can overcome this, but we're still preparing ourselves for the inevitable and on Thursday his hospice nurse strongly suggested that we don't leave his side.

Chris and I have been sleeping on the floor in his bedroom each night, listening to his labored breathing and dreading each sporadic episode of apnea where he doesn't breathe at all. It's impossible to truly prepare for what we'll have to endure, and it makes it extra heartbreaking thinking about the possibility of him never meeting his little sister. We're living minute by minute right now.

We started him on an antibiotic yesterday, for no particular reason, we don't even know why he's taken such a sharp decline so quickly. We just want to give him the best chance possible. Meanwhile we're keeping him as comfy as possible with nonstop cuddles and kisses.









Saturday, October 12, 2013

Need a new GJ

Oliver's GJ tube is starting to show signs of erosion so it's time to go back to Connecticut Children's and have a new one put in. His appointment is Monday afternoon, hopefully the current tube lasts until then! If it doesn't we'll have no way of administering his meds, or food, or fluids and he'd have to be admitted to the hospital.

Because he already has a GJ in place, the replacement procedure should be very simple. It still needs to be done in the Radiology department to make sure it's ending at the correct place in his small intestine. The good news is Oliver won't need to be put under, anesthesia is very dangerous for a child with MLD.


Ollie got to hang out with his Grammy on Sunday :)
(and Grampy and Uncle Greg)



Daddy gets Ollie ready for bed. Look how big he's gotten!


Ollie takes an early Saturday morning nap


A beautiful day for a fall walk with his favorite nurse.


Nap time with Dad.