Tuesday, July 23, 2013

Super Oliver and his sidekick Super Dog. :)

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Saturday, July 20, 2013

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.

Saturday, July 13, 2013

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.

Tuesday, July 9, 2013

Trying to beat the heat

Recently it's been difficult getting Ollie outside for any fresh air. The 95* heat and humidity is just no good when he's having breathing issues. Today however we managed to get out for a nice long wagon walk before it got too warm. :) He was awake and relaxed the entire time(he usually naps).

He started a third type of antibiotic yesterday, but it can take 72 hours to see it's effect. Let's hope the third times a charm!

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Monday, July 8, 2013

no improvement

Oliver is on his 4th day of the new antibiotic and he woke up with another fever and awful breathing. He's been fighting pneumonia now for over two weeks and we haven't seen any improvement. The antibiotics just can't seem to kick this bout. :(