poor pip
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.
Labels: hard stuff, monkey frog, piper jane, suck city
she's sick. i'm in denial.
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.
Labels: hard stuff, i feel sad, piper jane, suck city
(un)sweet dreams
there you have it.
Labels: hard stuff
what i'm up to





~she also got engaged and is getting married in 2011
Labels: boring, Family, fat daddy, hard stuff, wanaque
it's easy
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.Labels: hard stuff, piper jane
i have been trying
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.
Labels: camping, hard stuff
new kid in school
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.
Labels: hard stuff, i feel sad, piper jane, wanaque






