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poor pip

Saturday, January 23, 2010 posted by Reagan at 9:45 PM
my poor little pip. no one is sure what is going on, but not only is she not getting better, but she got a little worse the last few days. her chest x-rays are continuing to be foggy with lots of lingering infection. 10 days of antibiotics and about a dozen other medications and still nothing. i think the doctors are as frustrated as we are. when you're working with a child who the medical history she has, it makes things really complicated. pippy likes to keep them on their toes by giving them all kinds of challenges.

i like that pippy isn't puffy like she was last week. she looks like her pretty self again, even though she is still sleeping most of the time. they have tried a few times to take her off the paralytic, which hasn't worked, but i was glad to snap these two photos of her cute legs crossed during the off-the-paralytic time. she sits like this often when she is not sick, so lady-like.

dont mind her bloody art-line. try to focus your attention on her adorable e.t. phone home toe.
so, they did take out one of her IVs, which is good at least. she still has her art-line and her central line. they also had to put a feeding tube in her little nose because they have been worried the g-tube is making her aspirate. they were able to place the nasal feeding tube farther down her stomach to try and avoid that.

we are still missing her more than ever. i feel like i haven't seen her in forever. i said this in my last post, but even though we are spending so much time with her, it really doesn't feel like she is there.

ummmm, so yeah, there's an update. chin up....saying it 10 times.

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she's sick. i'm in denial.

Friday, January 15, 2010 posted by Reagan at 8:22 AM
it's ironic that i was telling my friend about the worst weekend of my life, just 3 nights ago. January 17th, 2008 was the night that Pip's heart rate slowly dropped lower and lower, until it was in the single digits as a result of a serious bacterial infection. we held our breaths and cried. the doctor shook his head and told us it was likely the end for her. after sitting around 6 for a about a minute, her heart rate started to slowly slowly climb back up. it felt like a miracle. i could tell the doctor was shocked to see us on his next shift two days later.

i think about that night sometimes. all the machines she was hooked up to, all the different lines she had in, all the blood transfusions, the oscillating ventilator, the medically induced coma and how she was so swollen that they had to goop jelly on her eyes because her lids couldn't shut all the way. she had stretch marks from all the fluid, she looked nothing like piper jane.

almost 2 years to the date later, we're there again. sorry if that was a long round-about way of it. this sucks. she is just short of that sick, which is a good thing, but she is very sick. it started on wednesday night when we met her in the emergency room at st. joseph's, i couldn't believe when the doctor told me she had almost had a cardiac arrest. the last two or three times she has been to the ER or PICU, it has been for moderate respiratory distress. i was kind of just expecting to see her breathing hard and a little upset. i couldn't believe she had been constantly ambu bagged since her arrival. total denial. around noon she was transferred to columbia. i rode in the front of the ambulance since the fellow was in the back with pip and the other paramedic (let me mention that we know these paramedics by name, they know piper like they know the back of their hands. this was her 17th ambulance ride) so i wasn't able to see what was going on. in my head i kept thinking that things are getting better already because we are going to columbia and it is one of the best children's hospitals in the nation. then the lights came on. then the siren came on. then we were going 90. have you ever gone 90 across the gw bridge? it's impossible (literally), unless you are in an ambulance.

this is getting long. it's good to write it all down, because i tend to get flustered and upset on the phone when i try to explain the situation. also, jake is still trying to get some sleep since we came home so late, and this keeps me busy.

we sat in the waiting area while they worked on her for about 5 hours. we were both not really sure what was going on. her heart rate started to drop, and they were having difficulty in trying to control it. the wound up doing and emergency central line, that goes directly to her heart, which helps a lot. she in on nitric, but as of this morning they have been able to ween that down by half (good sign). also, through the night they were able to take her off her blood pressure medicine. she got a blood transfusion last night because her count was low. her white blood cell was 3 times the normal amount because she is fighting pneumonia. she is on a paralytic drip to keep her still. so, she is medically comatose like she has been before. it's hard to see her just laying there, but compared to the morning when she was awake and crying out, i choose this. they had to tie her arms down and she couldn't understand why. she would just pull and pull at them trying to get them free. then she would look at me confused why i wasn't helping her. the hardest thing personally about these episodes is feeling helpless. i can't make it go away, and i can't make her feel better.


i just keep thinking, i can't believe this was only one week ago. i think i left out a lot of stuff, i'm pretty sure i rambled and proof reading seems too exhausting, so go read jake's blog.


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(un)sweet dreams

Wednesday, January 13, 2010 posted by Reagan at 5:17 PM
"I'm sick of following my dreams. I'm just going to ask them where they're goin', and hook up with them later" Mitch Hedberg

there you have it.


yes, i'm in a rut. a suck rut. a work rut. rut, rut, rut.

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what i'm up to

Saturday, January 2, 2010 posted by Reagan at 10:35 PM
~my parents were in town. they were here from tuesday until today. so if you are wondering if we got crunk on new years with my mom and dad, we did. (crunk can also mean playing "scattergories" and eating peppermint joe joes. i miss them already. and so does the pip.



~piper jane moved to new jersey. the move went fine. everyone there is trying to make us happy. it's not working, but we are really trying to stay positive. i don't really know how to explain the feelings i'm having. it's like moving someone away from their home and then leaving them to be cared for by strangers. that's about the exact feeling. so, basically i'm still feeling pretty rough about it all. and bitter. and picked on.

~i'm really trying to not sound like a snob, but i am not into blogging lately. when browsing the web i am still blown away by the fakeness of so many blog authors and i dont want any part of that. i seriously feel like i am the only one who sees right through these fakesters. really though, i want to continue reagan's blob because of piper jane. only because she is such a rad chick. a lot of people love her and the blob is helping me connect with them. wether they are family, former nurses, anonymous readers, friends or people who have ccms in there family, blobbing has been great for us. i think i wound up sounding snobby by accident anyway. i'm sorry if i did.


some other stuff...


~jake and i saw groovaloo at the union square theater. that was really fun.


~we walked across the brooklyn bridge with my parents



~we celebrated our 3rd christmas with pippy



~we bought flights to Utah

~ my best friend is moving to the UK

~she also got engaged and is getting married in 2011
~my christmas tree is still up and it's not because i'm festive.

~i cannot stop thinking and talking about the show dexter. dont ruin it for me if you are current. we are still watching the dvds.
~i can't stop playing with my voice changer app. jake asked me why my voice was hoarse and i felt a little stupid saying "oh, because i've been singing every song i know into my phone for the past 2 hours so that i can change it into chipmunk voice". including "garden grove", "paparazzi", "fidelity", "chinese", "here comes the sun", "popcorn popping", "rocky top", "no other one", "the fear", "take a chance on me". etc.

~i'm not feeling very inspired when it comes to blobbing. i know i wrote that earlier, but i really mean it. i'm not sure if i'll be changing anything, or what. i'll probably be back to normal as soon as i stop hating the internet.

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it's easy

Sunday, August 23, 2009 posted by Reagan at 7:50 AM
sometimes it's really easy to get down. sometimes i think about how it's been more than two years and pip still isn't home, and what's fair about that? especially when i was laying in bed last night and i just wished so bad that she would have been there and fallen asleep in my bed while i was reading her a story. and then i would snuggle her before tucking her into her little crib. especially when i read something this morning written by someone who doesn't know me and had no intention to hurt my feelings so much, but did. it's easy to feel those feelings. and it's hard to stop them.

thankfully, i know how special piper is. and to me, she is the most beautiful little girl in the world. even though she has a trach. even though she has tubes and wires connected to her all the time. even though she has a feeding tube poking out of her stomach all the time. and even though i've never seen her without those things, i think she is beautiful and special. i know how many lives she has touched because many have made me aware of it. emails and comments from wonderful and encouraging people have come at the most needed times. they are starred in my inbox. i read them all the time. this is a really hard thing to go through, but these emails make me feel strong and motivated to do better and to do more and to love it. they tell me how much they love piper, and how much they wish they could meet her and that i've been blessed to have her sent to me.

i have been blessed to have her sent to me.

it is easy to feel down about this tough situation, but it's also easy to feel extremely blessed if i just try a little. thanks for all the encouragement, it means the world to me. and it helps me so much.


i hope you enjoyed these pictures of my angel on friday. i have more pictures to post of pete and grandpa wally later.

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i have been trying

Sunday, August 16, 2009 posted by Reagan at 10:43 AM
i've been trying for several days to post some pictures of piper that are completely adorbs, but blogger wont let me. i guess i'll never blob again.

we went camping on friday night with some friends and had the best time. i couldn't help myself and was wishing quietly that Piper Jane was there. i would have spread out a blanket in the shade for her to sit on and watched her throw rocks with her little friends. i guess i'm a little sad that it might not ever happen. and i guess i'm just being a wimp about everything because i can't see her today since i'm sick.

and by the way, i'm sick. i woke up with a mean sore throat which i knew was coming after last night's scratchiness. you know that feeling? i always try to scratch it by clicking inside my mouth and it drives jake bonkers. anyway, i'm mad...mad, mad, mad. i can't see piper in these conditions. all i can do is lay in bed with the laptop and watch movies on instant queue.

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new kid in school

Saturday, May 9, 2009 posted by Reagan at 9:45 AM


I missed this little one. It seemed like I hadn't seen her in forever when I got to Wanaque yesterday. I drove by myself! And it wasn't even that bad! For those of you who don't know, I have a huge fear of driving by myself to unfamiliar places. It's something that has only become a fear since I've lived in the city.

I'm still getting used to Wanaque. It's weird seeing Piper so smelly and dirty. I appreciate Blythedale so much more now that I think of it. They kept her so nice and squeaky. I asked the nurse about the bathing schedule and she got very defensive and claimed that Piper gets like 50 baths a minute. Yeah right, lady. Every time we've gone I have had to bathe her right away. I can't deal with crust and stink. The only problem is that a bath wipes her out and she usually needs a nap after that. Dont get me wrong, I love snuggles and I plan to make piper a little snuggie some day, but I am anxious to see her play like normal again.

Her fever and sickies have seemed to go away for the most part. I should explain that. Moving to Wanaque was a shock to her little immune system and she came down with some new little bugs in the first few weeks. Like I said, most everything has cleared up, but her vent settings are still much higher than normal as a result to high co2 levels. I am a little suspicious that the real reason they are still high is because the nurses are too lazy to fool around with her settings (making sure they are as low as possible without causing her to desat). This would cause them to actually need to go in her room once in a while. Heaven forbid...seriously, they will do whatever it takes to prevent going into the child's room.

I hope I'm not peeving anyone off by all my gripes. But I had a hard time holding back and explosive rage yesterday. I wanted to run through the hospital and yell to everyone that they are doing things wrong. Blyethdale, please take us back. Please?

it's going to get better.
it's going to get better.
it's going to get better.
it's going to get better.

and if it doesn't then I'm giving myself permission to beat someone up.

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Name: Reagan
Location: New York, NY, United States

I'm Reagan, Hooray! I am a hairstylist. I am Jake's wife. I like soup. I like cookies. I like running. I like telling jokes. I like not eating animals. I like being outside. I like my Aunt Peggy. I like gingham. I like having three seesters. I like being Mormon. I like my pet fishies. I like having blonde hair. I have a bike named Marsha. I am the mother to a little baby bird named Piper Jane. She has Cerebro Costo Mandibular Syndrome. Do you know what that is? If you do, please email me.