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
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
Today I feel sad
So.boring.so.boring.so.boring.
Of course I play with pipsey and read to her, and I love that I can take her on occasional walks outside of the vent unit, but imagine spending most of your time with your child(ren)....sitting next to their bed, watching them. For hours and hours. And there really isn't much else you CAN do to switch things up or add a little excitement. Sometimes I don't mind. Sometimes I'm content. Sometimes I can't peel myself away from her when it's time to go home. Sometimes I cry when I leave. But sometimes I feel like I do today. I'm glad it's only sometimes.
I probably come off as really ungrateful. I hope I don't. And I know my suffering is fractions compared to Piper's. I'm sure she would say that I have no business complaining. And she'd be right. Have I ever said that I wouldn't trade her for anyone else? I wouldn't. She chose me, and I want to do my best.
But, it IS ok to be sad once in a while, right?
P.S. Just try to be sad while you are looking at this picture of piper eating this huge toy.
Labels: boring, i feel sad, piper jane





