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.

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.

5K For Ollie

If you'd like to participate in the SHU 5K on 10/19 for Oliver please go to: https://alsangels.ejoinme.org/MyPages/DonationPage/tabid/113190/Default.aspx and choose "Oliver Ciparelli Runner Donation" from the drop down menu. This fundraiser will support Oliver's Team and the MLD Foundation. Thanks again to the SHU Women's Lacrosse Team and Al's Angels for putting this event on. Hope to see many of you there and thanks for your support!!!

September 2013

Here's Oliver getting ready to watch football. He's getting so big! He's been on a higher calorie formula and has gained over 2.5 pounds! Yah!

Unfortunately he's been fighting pneumonia on and off the past few weeks. It seems like he'll just be finishing the antibiotic course, have clear lungs for a few days and then aspirate again. It's frustrating, and nothing we're doing for him seems to be able to prevent it. When he has clear lungs we're able to get smiles from him, he's happy and alert. When his lungs are junky he sleeps all the time, needs constant suctioning, breathing treatments, is hooked up to the oxygen etc and just looks plain miserable. :( We wish he could just feel well for longer than a day here and there. It's just not fair.



We did get out of the house on Saturday and made it to Open Farm Day to see some animals.



























It made us a little sad to remember the previous years we have attended Open Farm Day. Oliver was able to climb and play on the tractors, we have dozens of pictures of him pretending to drive them. He used to moo at the cows(though his moo sounded more like a satisfying Mmmmmmm). He could walk around, talk, point, express interest and pleasure. This year was quieter and sadder. We miss so much everything MLD has stolen from him.

On a happier note, Oliver is very excited for the arrival of his baby sister some time in the next few weeks! He hopes she's here for Halloween so they can go trick or treating together as Batman and a candy corn.

Super Oliver and his sidekick Super Dog. :)


- Posted using BlogPress from my iPad

Antibiotic round ?

It's the last day of Oliver's 4th antibiotic for his aspiration pneumonia. It was a 10 day course, and while we didn't get to the point where his lungs sounded clear, we had seen a few improvements. His coloring had returned to normal, the mottling had disappeared, his eyes have been clear and alert, and he hasn't had a fever since last Saturday... Overall it was just his lungs we were waiting on. Despite his improved outward appearance they still sounded crackly, which we learned, with enough damage that's just how people with really sick lungs might sound, even if they don't have pneumonia. So we were kind of prepared for that to be his "new normal", crackly lungs but not necessarily fighting off an infection.

Well today, day 10 of 10, he has a fever again, his breathing is juicy and labored and he's pale. His Dr. called in a prescription for the same antibiotic he just finished. We're not sure if she thinks it will really help him, or if it's just because we're not willing to stop fighting. I mean, we thought it was working, at least it appeared to be working, he was definitely doing better. But now he's doing worse again. Did he aspirate again? Is this a new pneumonia, or the same he's been battling? We can't see a reason not to give it to him. There are many interventions we won't subject him to in an effort to prolong his life, such as a ventilator, a trach, and trips to the ER, but an antibiotic that goes right into his GJ tube with his formula, we can't see not trying that for him, even if it's just for a few more smiles.

Not sure what to say

This post is hard to write. I'm not even sure where to begin.
As most of you know, Oliver has been battling pneumonia since the end of June. It didn't respond to his usual antibiotic, that has worked so many times in the past 9 months. We tried a second, broader spectrum antibiotic. On day 3 when his lungs sounded even worse we realized we didn't have time to "wait and see" if it would eventually start working, so we started a third, even harsher antibiotic to kill off the bug infecting his lungs. He was on this one for only 2.5 days and had explosive diarrhea, and was becoming dehydrated. He was also losing massive amounts of weight. In just 2 weeks he dropped from from 33 lbs to barely 28 pounds. We could see all of his bones, he didn't look like our sweet chubby cheeked Oliver anymore, he looked like a skeleton. On Wednesday we had to stop this third antibiotic, his lungs only sounded worse, and the dehydration was taking it's toll. We didn't know if we had any options left, but our hospice nurse called his Dr, who spent the next two hours researching possible courses of action. Meanwhile Oliver developed a mottling pattern in his skin on his feet, ankles, and partly up shins. Mottling is a blotchy bluish pattern that occurs when the limbs aren't getting enough oxygen because the body is reserving all it's oxygen to run the vital organs. This was ominous. It's a sign your body is shutting down. In adults once mottling of the skin starts, death usually occurs within 24 hours.

Our usual worry became a sickening terror. It takes over your body, you can't focus on anything, except the fact that you might have to say goodbye really soon. How on earth do you prepare for that? Since last April we've known the horror of imagining our son's last moments, it's a thought we've tried to lock deep in the back of our minds since we heard the words "terminal" and "no treatment options". Even locked away, even "making each moment count" we always knew it was there, like a shadow over our small moments of happiness. But imagining and experiencing are never the same thing. How will we possible handle the indescribable sadness of holding our baby as he takes his last breaths? He's 3 years old! He's our baby, we shouldn't have to do this!

We asked our nurses if we could be alone and we spent the night crying and cuddling our little boy. We got a phone call around 6:45pm, there was another antibiotic we could try. Just one. Last one. Last hope. Chris sped to the pharmacy to pick it up. We are grasping at straws, but knew we had to try it or we'd never be at peace. He had that first dose on Wednesday night, and yesterday(Friday) his lungs sounded no better, and he still has a fever, though the skin mottling has faded down to just the soles of his feet. Our nurse said kids are like that, they don't give up as easily, they fight, fight, fight, they rally. We don't know yet if it's working or not.

We're giving it time, it's all we can do. His breathing is easy, and he's been sleeping a lot, but he's comfy and peaceful and whether this antibiotic works or not, that's all we're asking for.

As only someone caring for a terminally ill loved one would understand, we find ourselves torn at times, at all times actually, torn between wanting to try everything and anything on the face of the planet to help him and just, well, just letting him go, letting him be done fighting, letting him be at peace. We know we're losing him, we've been watching him fade. MLD has stolen everything from him, there is really only one more thing for it to steal. When do we just let him be at peace? There is no right answer, there is no wrong answer and our answer is always changing.