Belly and The Bug: Cyan

Showing posts with label Cyan. Show all posts

An appropriate title for this post simply doesn't exist

We got back from Costa Rica last night and I will certainly do some extensive blogging on our trip, but I need to relay some bad news. About half an hour after we got back to Portland, Erika told me that D had received a call from Cyan's mom. Cyan had come to a point where her parents had to make the decision to "let her go." And so, it is with much sadness that I write this: Cyan passed away yesterday.

I know that there were people literally all over the world praying for her and keeping her in their thoughts. I really want to believe in the power of prayer but why doesn't it work every time it is so thoroughly deserved? It's not fair and damn it - I want fucking fair. I positively ache for Cyan's family and friends. Eleven and a half years ago, one of my sisters died in a car accident. It was sudden and final and there was no up and down and holding out hope. It was and still is devastating. Cyan's situation was different in that her family had hope. But is that worse? To believe with all you've got that there will be a happy ending to this trauma and then the worst happens? I think it might be.

I just...I just don't know what else to say. It's too sad; too unfair.

I believe the technical sound is "lubb-dub"

As in, lubb-dub lubb-dub lubb-dub lubb-dub - the sound of a beating heart. Just like Cyan's new one! Her new heart is pumping away and she has been moved into a recovery room. Keep the good thoughts flowing that everything stays strong and that internal damage was minimal from the rejection of the last one. One incredible hurdle down...not sure how many to go but what a heck of a good start!

HEART!!

Erika just emailed me that Cyan has two potential hearts on the way. They've scheduled her surgery for 6pm today. PLEASE send Cyan all the positive energy you can today. This is really it. Oh God.

A big heavy day

I've started and stopped and edited this post about six times so far today. It has been...a day. A week. A month. I'm ready for things to chill out. Last night, I felt like I was going to implode with everything going on but today has been more calm - mostly because there are things I can control and things that I definitely cannot. I'm old enough to know that shitty things happen and I have no choice but to deal with it all. I also know that things that suck ass now sometimes work out for the best in the end. And sometimes things just suck ass. Here's what I've got going on (in no particular order)...

I had a post-op checkup with the oral surgeon today because, well, I still can't feel half of my chin. He believes it's temporary nerve damage but it could go on for as long as two months. I'm going back next Wednesday afternoon for him to check it again. He packed my sockets with clove eugenia (is that redundant?) which helped with some of the pain, but everything is still pretty sore - except, of course, my chin. I can't take the Percocet during the day because that could impair my parenting ability, so I'm only taking ibuprofen for the pain. And I have McCainian jowls - especially on the left side. It's pretty sweet.

I called to schedule the developmental evaluation that Belly's pediatrician recommended yesterday. There was a little confusion when I called, though, and I was bounced between a few people. I started getting the distinct impression that this evaluation was for behavioral concerns, not motor skills as I had been led to believe. After ultimately leaving a voicemail for someone that was supposed to be the person that could help me, I was overcome with a flash flood of worry. I got a call back a couple hours later and it is because of the walking not something else. Now I can go back to just worrying about it like I was before I started making calls.

My mom has had a lump on her collar bone for several weeks now and has done nothing about it. I felt it the other night and it was pretty solid, yet still kind of malleable. I made her call her doctor and schedule an appointment for this morning to get it looked at. Two of my siblings have had Hodgkins lymphoma so we tend to freak pretty hard core when lumps start showing up. I did my best to stay calm but it made me absolutely insane that I couldn't go with her this morning. Her doctor was worried. She sent Mom to get an ultrasound, after which Mom was to discuss next steps with the radiologist. Just in case, the doctor scheduled a CT scan for later this afternoon and a biopsy for tomorrow morning. Great. THAT sounded like no cause for alarm. So Mom had the ultrasound and the radiologist determined that the lump is just muscle mass. Basically, Mom is in desperate need of a massage. Thank effing God. I had already hatched the entire plan of how Mom was going to move in with us, I'd take care of her, etc. I hadn't quite figured out how I was going to run the B&B from Portland, though.

The Charmer. The sellers, whom I believe I've mentioned are completely insane, decided to go out of town for the weekend and think about things, informing our realtor that we'd hear back from them on Monday. What's the effing point in being like that?? It's not our fault the house didn't appraise. We should now be a united team trying to get this transaction done. We can always buy a different house. They're stuck with a house that appraises for less than they want to sell it. I just don't get them. The stress around this deal is two-fold: 1) I want this house and I will be seriously, seriously bummed if we don't get it (although, at this point, we've done everything within our power to make it happen); and 2) I need for the whole thing to not eff up my Costa Rican vacation plans. I need that damn vacation. And if the combination of both one and two were to happen, I might go postal on the seller. I'm so not kidding.

So my stress levels are awfully high today. But then I think about Cyan and it all seems petty and totally manageable. Erika emailed me this morning with a clearer picture of what's happening with Cyan. The head of the PICU at the hospital where she is says, "Things are not going well. I can’t say much due to privacy issues but a huge miracle is needed and lots of prayers for her and her family." Cyan definitely needs a new heart and has been alive only because of life support. They do not and will not know the extent of the damage to her other organs and her brain until she has a new heart. I simply cannot fathom what her family is going through. This constant straddling of the line of life and death seems so drawn out and immeasurably torturous. My niece, D, is obviously quite upset as she watches one of her best friends hover in limbo. She told me that she cried at school today. Ugh. I wish there was something I could do for SOMEONE involved in this terrible thing. I hate feeling so helpless.

This is not a pleasant post. No. No, it is not. Let me end it, though, with a beautiful poem that D wrote today entitled Continuous Infusion: Cyan.

You were born with a broken heart

but it won't be hard to fix

Butterfly wings will rip through the back of your arms

and a tree will sprout from between your lips

I'll send an envelope embossed with silver

And in return you can send me a swarm of bees

You were born with a broken heart

but it won't be hard to fix

I'll connect myself to you with a tube

And a series of memories linked like a chain

I'll send a continuous infusion straight from my heart

Blood transfusion full of love and music and a waiting glass house:

Everything you'll need to survive this

Teeth, toddlers, Cyan

Alright, so I'm definitely more sore than yesterday. The left side of my jaw is swelling more and I can't open my mouth any more than necessary to gingerly slide a spoon in. I think the worst part is that I can feel these sutures in the back of my mouth and I know they're not, but they feel like they're dangling out in my mouth. I want them to hurry up and dissolve already! Plus, my chin is still numb. As in, I could probably have it pierced right now and not feel it. Not that I would. I don't like chin piercings, but that's not the point. The point is that it's weird to not be able to feel one's chin. Also, it hurts to laugh - too much cheek movement. Ugh. I'm whiney. I will be honest, though, and say that it's not as bad as I thought it would be. Tomorrow may be worse. We'll see.

Also, the girls had their eighteen-month checkup this afternoon. There were shots involved - four each. Not good. Buggy actually held in her little tears of agony until the third shot. She was such a brave little kid. She was extremely patient the whole time the doctor examined her and even offered up her ears and mouth and everything to be checked as the doctor needed it. Everyone - including the doctor - was duly impressed. Belly was the complete opposite. She screamed starting when the doctor tried to listen to her chest and continued pretty much through the shots. It was a ton o'fun.

They've each only gained a pound and an inch since their last checkup two months ago. But the doctor said she wasn't worried about the low weight gain because they're active and haven't felt well this past month. And just as I suspected, the doctor has ordered a developmental evaluation for my little Belly. She said she's not concerned about any Autism or anything like that (YES!), but it would be good to get her checked out since she's slow with the motor skills. I suppose I shouldn't be worried about it, but I am. I'm the Mom. It's what I do.

Speaking of worry, Cyan has been stable, but is back on the list for another heart. I'm not 100% sure, but I think they've been forcing this heart to work for her via machine because her mom said "they may restart this heart in a day or two and see how it's looking." She also said the "doctors are feeling a little more optimistic." I guess that really puts my whining about teeth and worrying about Belly in perspective, huh? Things could be much worse here.

A promised Cyan update

Since my last update said that I'd know more today, I'm posting. Going forward, I will only post when there is substantial news. Things are still very much in flux with Cyan. She had further exploratory surgery, a big complication, possible damage to other internal organs, but the bleeding in her chest has stopped. Her mother says they have "guarded optimism." Keep her in your thoughts and prayers, please. Sigh. This is rough.

Update on Cyan

I've had some emails asking, so here is an update on Cyan. Erika told me earlier today that she is sedated and we probably won't know anything more until Monday. Please keep Cyan in your thoughts, people. She's still in the thick of things.

Cyan

My 15-year-old niece has a good friend named Cyan whom I have never met but have been thinking about on a pretty consistent basis for the last week. Cyan has been in the hospital for more than a month because her heart has been wearing out. I guess she was born with some sort of condition and they've been expecting this for the last fifteen years. The only thing that would fix the situation would be a new heart. After 4 or 5 possible hearts that weren't quite right, one became available for Cyan a week ago that was right and she underwent a 10-hour surgery.

Let's stop here for a minute. Can you imagine the joy at being told that a heart is on its way? And the sheer terror her parents experienced knowing that going into that surgery might be the last time they see her alive? I can't. I just can't. It seems unbearable. Back to the story...

The surgery was a resounding success. Cyan's new heart has been beating solidly in her chest. She's been healing quickly and as of Tuesday, has been IV-free and preparing to go home to finish recovering there (much less risk of infection than in the hospital). That was the last update that I got from my niece this afternoon. Plus she read me a beautiful poem that she'd written that was inspired by this whole ordeal.

I just got home from going out for a quick dinner with Dude and the girls and there's an email from Erika saying that Cyan is now back in the ICU and showing signs of rejecting her heart. And my niece posted on Facebook that Cyan had a heart attack. I've been crying and praying as my own heart now hurts.

If asked, I would say that I'm not religious, but I'm not sure that's exactly right. I guess I'm more spiritual, but that sounds hippie-dippie and not accurate either. I suppose I'm somewhere in between. Regardless of classification, I believe in God and I've been begging "him" to save that girl. Save Cyan. Save. Her.

Belly and The Bug