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Our week in Pictures.

Beach combing in Gualala

 Simon meets Sea Flora

 A boy on the beach

 Jaime and Mamaw are ready for the Pole expedition

 Mellow Mama and Simon

Little did we know that the mellow would turn to lethargy and the lethargy to feverish and the feverish to Pneumonia

Trying to keep cool and keep the O2 cannula in

Our first wagon ride complete with oxygen tank

He can still find the smile

Day of departure- Simon's making plans for a big NYE

(Please note the size of the bed- Jaime and Simon spooned in it together)

Heading out

I have conquered pneumonia! I am the master of my domain- HOME!!!!

I am sure that there will be a blog sooner rather than later about the whole adventure/ nightmare but right now it's 9pm and both Jaime and I are completely tapped.
Happy New Year to all and humongous thanks to all that called, texted, brought over food, ordered us food, sent love, light, prayers, healing thoughts and WTFs. All were welcome and central to our getting back home safe and sound.

and to all a good night.

Angry

Jaime here:
Today I am angry.  I am so tired and am I so angry.  I am angry that we are in the damn hospital again.  I'm angry that none of us are getting enough sleep.  I'm angry that my son is stuck in an environment where he can't touch anything because it's dangerous, germ-wise for him, or he's dangerous to someone else. I'm angry that Simon has to wear a mask every time he leaves our room.  I'm angry that I can't figure out what we need from friends who are offering to help, even though we've done this before.  I'm angry that I don't feel like it's safe for friends with little kids to visit because Simon has something potentially dangerous for them.

I'm angry that maybe this is caused by RSV and we didn't get a shot to prevent it because we all thought he was old enough not to  need it.  I'm angry that I have zero feelings right now for anyone, except Simon,other than annoyance, frustration and impatience.  I'm angry that our roommates left and they had a space 2x as big as ours with a window and we have been told that we could move over there but housekeeping hasn't come so we can't move and the garbage is overflowing and it feels like we've been living in a cave.  I am angry that the standard of nursing attention is so much lower on the floor versus the ICU or that our expectations are so much higher and that makes us look not like the "on top of it parents" but the "annoying parents".

I'm angry that Simon's pulse oximeter is malfunctioning and the dude that came to fix it basically said it's b/c Simon is too wiggly.  Bullshit.  It's a children's hospital.  FIX IT. This frickin number is the only thing that is keeping us in the hospital.  If you don't fix it, I spend all night being woken up by an alarm that says that my son has no oxygen in his blood when, in fact, he's wide awake and pissed about being in the hospital and very much alive. I'm pissed that the light in our area is broken so we only have bright light.  I'm pissed that our chair bed is broken so if you stand on it (which you have to do to get to Simon if the bed is down) you practically break your neck b/c it slides apart.  And I told a nurse about it 2 days ago.  And I'm too damn tired to really pitch a fit.

I'm angry that this is how we had to spend our vacation.  We got three days.  Three.  It was supposed to be almost 2 weeks. I so needed this time to reboot and instead I'm running on reserves.  I'm angry that we might spend New Year's Eve in a goddamn hospital instead of Gualala or even our house.

I think that's it.  I'm sure I'll be overflowing with gratitude tomorrow when I've slept and been in the sun, but today I'm surly.

Oh, and I'm pissed that the delivery guy who is trying to deliver our freezer flaked yesterday, knowing that one of us left the hospital to be home to receive it.  A-hole.

Back in Day 3

 



We are 22 hours into our return stay at Children's hospital. It's only just starting to feel real to me.
It's been 21 hours and 50 minutes of feeling that old 'What?! What the FUCK is going on'.
Where is my Simon, who loves to joke and insert his own name into anything and everything it fits or doesn't fit into. Old McDonald has a Simon? Totally.


Instead for the last 48 hours Jaime and I have been trying to manage this very sick and sadly very familiar child/world where we know how unplug lines and get Simon untangled before alarms go off, which Dr's to ask for and when, which nurses can be our best friends and which we should trust in no matter how we feel about them. We know what to order from the cafeteria and what toys to bring from home that won't take up that much space but might just bring out a smile or "otay" from Simon. We know how to keep in touch with our community and rely heavily on the texts, calls, and messages from our wide ranging family. We know how to rattle off Simon's list of medications and blenderized formula bolus feeding schedule. We know how to do this......
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


It's now Tuesday night. I'm tired. Simon is mumbling falling asleep phrases next to me clearly feeling better than three hours ago.

Jaime and I left him with Dianne and Dre to go home for a few hours and eat and clean and make him more blenderized food. When we left him he was feeling so crappy and certainly not any better than when we were first admitted.........blah blah blah viral not bacterial, blah blah several more days to kick it, blah blah, heart not having to work too hard right now, blah blah blah.

You know what, I'm sorry I can't regale you with details right now. All I can say is how fucking scared and out of my body I have been for the last three days. It's like having PTSD but the T is so very fucking real again.

I watched Simon struggle with breathing. I watched him soak his pillow with sweat. I watched as he pulled hard from both his neck and stomach trying to take in air. And I watched it get worse and worse over the course of hours. I watched as he regressed and couldn't get out simple 'yes's and 'no's. I watched the hours go by and couldn't get a medical person to tell me what was going on. I felt my head fill with facts but no feelings and I watched as Jaime and I moved around each other taking amazing care of business but not knowing how to really take care of each other.

I feel numb and exhausted and I just want to go home. I want to take Simon home. I want Simon to be better.

I don't ever again want to have to watch him struggle to breath. I don't want this.
Done
Over
Finished.

But it's not, and tomorrow will be another day. Hopefully better.

Praying for sleep for us both

Back in the Hospital

Just a quick update as I've just spent the last 8 hours in the ER and left Laura and Simon on the 4th floor of Children's Hospital Oakland.  Hell hath no fury like an exhausted, sick toddler.  Holy crap.

The short version is that they think Simon has pneumonia and are keeping him overnight because his blood oxygenation is below normal (88 without additional oxygen) and anything below 95% is concerning.  He was punky yesterday and seemed to have a mild fever (travelling and didn't have thermometer) and an occasional deep, awful sounding cough, but was basically okay, just seemed tired. Today he barely got out of bed and by 2 pm Laura decided to go get a thermometer.  He still just felt sort of warm but nothing extreme but the thermometer told a different story.  His temp was 105, he was breathing pretty fast by the time Laura got back from the store and we were 4 hours from his doctors.  We did an abbreviated pack up of our essentials and left my mom and stepdad at their house on the coast and hauled ass to the ER at Children's Hospital Oakland.

The good news is that his fever is under control with Tylenol and his heart seems to be doing pretty well in terms of low heart rate and normal breathing.  His oxygenation...not so much.  The chest x-ray didn't show anything and an exam showed a possible left ear infection.  Initially we were told no evidence of pneumonia on the xray and thought that ruled it out but our cardiologist thinks that the low blood oxygen is evidence that his body is working harder and since his heart seems to be doing fine, he thinks it's a bigger infection (pneumonia) than just an ear infection.

Will update tomorrow.

This sucks.