no no no nononononoNONONONO

H called earlier this afternoon. Prolly around 1230ish. She was on her way from the pediatrician going to the hospital. I guess Z got a rash a few days ago and when she came home from work yesterday, it had essentially spread everywhere. And then he started throwing up and running a fever.

wanna know what her fucking waste of a husband said? You can’t take him to the dr for every little thing. You’re being hyper. My sister was here, she’s a nurse. It’s just heat rash. FUCK HIM.

I guess after the baby spent the nite throwing up and being miserable with fever and consequently keeping H up all nite (But not Fuckwit. Nooo. Nope. He slept in the other room. Even tho H had just worked a TWELVE hour day.) either he said it would be ok to take him to the dr or my sister just did it anyways. Except, they don’t have an established doctor there yet, even tho they moved there 3 months ago. NOT gonna get in to that one. been thru it more than once. And most of the places they called said they wouldn’t accept a baby who wasn’t well for a first visit, cuz they want a healthy baseline to start from. WTF??

Anyways. They found a young woman pediatrician. Went to her. Once she got to Z’s eyes, which were completely red, she sent them to the hospital, suspecting Kawasaki disease. I’ll get to what that was in a minute.

Anyways. H just called me around 530, Jay was here- he brought me my gift from Ecuador…a real wool woven tapestry. It’s beautiful. I felt bad being on the phone while he was just sitting there, but it was important.

They haven’t been able to get an IV into Z yet. They’ve tried 6 times. Collapsing veins. I think it’s cuz he’s dehydrated. Plus he’s a very pudgy kid, so his veins are prolly hard to locate anyways.

They had to catheterize him to get a clean-catch urine sample.

And I realize, he’s a baby. 11 months old. Sure, these things prolly hurt, but in a few months he’ll also prolly not remember them. My sister, however, is not 11 months old. And this is her baby, her first little boy who she adores more than anything on this earth. I mean, there are mothers who like and love their babies. And then there are mothers who simply adore them. She’s that kind. It’s hard enough for her to work 12 hour days and not get to see him barely at all for 2 or 3 days in a row sometimes. And her husband. Is not…well…he loves Z too. And he’s supportive, I guess. But. Not…really. Not from what I’ve seen. Not from what she’s told me. Anyways. So. H. Is just a wreck. This second time that we talked, by the end of the conversation she couldn’t even say goodbye, I think she was just on the verge of sobbing. She asked me to call mum, cuz she just “wasn’t in the mood” to do so.

So I called my mum and told her all that H told me, plus all that I’d gleaned from my nursing texts. And as we were talking, her voice got shakey and tearful. I hate it when mum cries. It makes the world feel like it’s falling apart into a million pieces. I was, ya know, being optimistic and strong and thinking positively- that they’ve caught it, if it is Kawasaki’s, and so he prolly won’t have major heart damage, and that yeah the IV is hard to start, but if it comes to it they can always put it in his head, as painful and such as that is, it’s still an option….and then my mum starts getting teary and breakdown-y. And. And now so am I. My mum is not one who…exhibits weaknesses. Not saying that crying is a weakness. Certainly not saying that. But. In all of my life, I can’t remember her crying more than a handful of times. She just…doesn’t. She doesn’t. But now, she sort of is. It’s difficult for me to handle. It makes me feel like nothing is safe? I know she and I don’t have the best or closest relationship. But. But she’s my mother and I love her to the ends of the earth and I s’pose I still look to her to be composed and ‘strong’ cuz that’s the only way I know her. Anything else just scares me. She’s a rock to me. Even tho I know she’s human and has feelings. It’s. I can’t explain it.

and no one’s fucking HERE. No one. Jay left for the city. J’s on vaca still. M’s on vaca. AJ’s at work. Can’t reach Homie. My head hurts. I want to throw up.

Kawasaki Disease

from Pediatric Nursing, Jane Ball, Ruth Bindler
Kawaski disease, also known as mucocutaneous lymph node syndrome, is an acute systemic inflammatory illness. Although this disorder is most commonly found in Asian children, it is seen in all races. The disorder occurs primarily in children under 5 years of age. In the United States, Kawasaki disease is the most common cause of acquired heart disease in children. The etiology of Kawasaki disease is unknown, but the primary cause is theorized to be infectious in genetically predisposed children. It does not appear to be spread by person-to-person contact, but frequently is preceded by an upper respiratory tract infection.

The three stages of the disease are acute, subacute, and convalescent. The acute stage of Kawasaki disease is characterized by fever, conjuntival hyperemia, red throat, swollen hands and feet, rash on the trunk, enlargement of the cervical lymph nodes, diarrhea, and hepatic dysfunction. The subacute stage is characterized by cracking lips and fissures, desquamation of the skin on the tips of the fingers and toes, joint pain, cardiac disease and thrombocytosis. In the convalescent stage, 6 to 8 weeks after the disease onset, the child appears normal but lingering signs of inflammation may be present.

Diagnosis is based on clinical signs using the criteria given in Table 14-8. Blood studies show some abnormalities such as elevated erythrocyte sedimentation rate, elevated white blood cell count, mild anemia, thrombocytosis, elevated platelet count, and elevated C-reactive protein level. And echocardiogram may reveal some heart changes.

Clinical therapy of Kawasaki disease involves the use of aspirin and immune globulin. High doses of aspirin (80 to 100 mg/kg/day) are given while the fever is high. The dose is decreased to 10 mg/kg/day or less once the fever has dropped. Aspirin is taken until the platelet count is normal and may be continued on a long-term basis if cardiac abnormalities occur. High doses of immune globulin and of aspirin given early in the disease have been shown to reduce the incidence of coronary artery lesions and aneurysms, and to decrease fever and inflammatory signs.

Children are usually hospitilized as long as fever persists. Most children recover fully. Careful monitoring for cardiac disease continues for several weeks or months. Cardiac involvement is the most serious complication. Aneurysms and early atherosclerosis lead to arrhythmias, congestive heart failure, coronary stenosis, myocardial infarctions, and, potentially, death.

Table 14-8:
Kawasaki disease is diagnosed when a high spiking fever over 39o C (102.2o F) for 5 days or longer is present along with four of the following five criteria:
-Bilateral conjunctivitis without exudate, typically with distinctly visible vessels early in the disease
-Intense erythema of the buccal and pharangeal surfaces with dry, swollen, cracked and fissuring lips and a strawberry tongue.
-Dermatitis of the extremities, intense palmar andplantar erythema, induration of the hands and feet, and then desquamation after 2 or more weeks of the symptoms
-Dermatitis of the trunk with an erythematous maculopapular rash
-Acute cervical lymphadenopathy, frequently unilateral, with a node over 1.5 cm in diameter found early in the disease
-an illness not explained by another disease process

from Taber’s Cyclopedic Medical Dictionary
An acute febrile disease of children, marked acutely by fever, rashes, lymphadenopathy, and irritability, and chronically by late cardiac complications, including coronary artery aneurysms and myocardial infarction. The fever is present on the first day of the illness and may last from 1 to 3 wk. The child is irritable, lethargic, and has bilateral congestion of the conjunctivae. The oral mucosa is deep red, and strawberry tongue is prominent. Lips are dry, cracked, and red. On the third to fifth day, the palms and soles are distinctly red, the hands and feet are edematous. The skin on the tips of the fingers and toes peels in layers. A macular erythematous rash free of crusts and vesicles spreads from the extremities to the trunk. Cervical lymphadenopathy is present in the first 3 days and lasts more than 3 weeks. The disease is rarely fatal in the acute phase, but children may die suddenly from coronary artery disease some years later. This disease was perviously called mucocustaneous lymph node syndrome.

EPIDEMIOLOGY: In 80% of the children, diagnosis takes place before age 5, and usually the younger the age at onset, the more severe the disease. In Japan, the incidence is 67 out of every 100,000 children under age 5, which is the equivalent of 5,000 to 6,000 cases annually. By comparison, about 3,000 cases occur annually in the U.S.

DIAGNOSIS: Because of the similarities of this disease to others (i.e., scarlet fever and toxic shock syndrome), diagnostic criteria are strict. There must be fever and at least four of the following five findings: conjunctivitis; oral lesions like those described above; redness, swelling, and peeling of the fingers and toes; rash similar to that described above; cervical lymphadenopathy.

ETIOLOGY: Although the clinical presentation suggests an infectious etiology, none has been found as yet.

COMPLICATIONS: Formation of giant aneurysms of the coronary artery (esp. in infants and very young children) is the major complication and can lead to sudden death or myocardial infarction later in life. Other findings may include arthritis, otitis media, diarrhea, uveitis pylonephritis (sterile), and hepatic dysfunction.

TREATMENT: If givin within 10 days of onset of fever, high-dose intravenous immunoglobulin (IVIG) therapy over 12 to 24 hours can dramatically relieve the symptoms and prevent coronary artery dilation. Daily aspirin therapy will also decrease the risk of coronary artery dilation but must be continued for about a year. Antibiotics are not useful, and corticosteroids have not been used since the introduction of IVIG therapy. Frequent follow-up care, including repeat echocardiograms to detect or monitor heart disease, is essential.

PATIENT CARE: Medications are administered as prescribed, and the child is observed for salicytic toxicity. Both child and family benefit from psychological support during the acute period of illness and require continued support through the chronic phase. Parents learn about aspirin adminstration, the importance of following the prescribed regimen, and early signs of toxicity. The child requires careful monitoring during the acute phase and conscientious follow-up thereafter. The child’s progress is monitored; parents must understand the importance of normal activity, sound nutrition, and good hygiene. The family may have difficulty facing the possibility of the child’s death from coronary thrombosis or severe scar formation and stenosis of the main coronary artery. Referralto a mental health practitioner or spiritual counselor may assist them in dealing with this possibility.

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you are ALL in my prayers. and if you need an ear, i’ll call. i wish i could be there for you, sug.

July 29, 2005

ugh. hospitals. i hate it. xox *~

July 29, 2005

You & your family is in my thoughts.

I’m so sorry… I’ll keep him in my prayers. **hug**

I was just outside, walking the dogs, looking at the stars. I was thinking about your note that you’d never seen a shooting star. While I was thinking about you, I saw another one. It was very brief, but very bright. I used it to make a wish for Z. You’ll see one eventually. And when you do, it will mean all the more to you. *hugs* =o)