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.

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.