Wednesday, September 22, 2010

Surgery over!

Hayley did well with her lung biopsy. She was very nervous going in. The nurses and doctors were so nice to her (very impressed w/Primary Children's). They even let "Jackson" go with her....probably until she fell asleep only. She's on oxygen, but got to eat and played Bingo via t.v. in the Children's Room before surgery.

They told Kim, Hayley's in the "less than 1 percent" of the population to have had Kawasaki and HSP Syndrome. They are noticing they can almost track perfectly what her pain level is because of her oxygen level. They can tell she's in pain because her oxygen level goes down and when she's given pain meds, her level goes up a little. They will have her results in a couple of days. Hopefully, she can come home tomorrow. They need her off oxygen aid first. The predisone has puffed her face up and her color is off, but she still has a good attitude.

She even did her Spanish homework before being wheeled out...that's dedication!

Tuesday, September 21, 2010

Newest Hayley Update...

12:30 a.m. Kim called and they aren't doing Hayley's procedure today. Her oxygen is now in low 90's (which is better than yesterday) and she gets to eat. Hadn't had anything since yesterday. Chicken, mashed potatoes/gravy and a roll...maybe a smoothie. She's excited. Tomorrow at 11:30 a.m., they will put her out and put saline in her air sacs in the lungs to do a biopsy. Should be about 20 min. She said that as long as she's out...she's good.

She's looking forward to seeing the new episode of "GLEE" tonight. (She was supposed to have a Daddy/Daughter dance tonight at church and grandpa was taking Tori.) She told me she probably would have done more watching than dancing :)

Baby steps...doctors told her she is making history at the hospital.....hmmmmmm.

Hayley Update

Kim called yesterday. Hayley was supposed to start swimming to move her muscles so they don't atrophy. Instead, she went to the doctor. Kim called from the freeway stating they were on their way to Primary Children's...the ER was waiting for them. They did a CT scan and within 10 minutes, admitted her (for the third time this month). Her color wasn't good when we saw her on Sunday. The doctors said her oxygen levels were very low and she was coughing up some blood.

At 10:30 p.m., Kim called and they will be doing a bronchoscopy this morning. Poor thing can't eat anything until it's over. She said Hayley slept well last night, but Kim didn't. Her immunologist is right on top of things and they have done every test known to mankind! One of the doctors said that Hayley is an enigma....(we just call her Hayley!). She's had more blood work done, now we just wait...again. Seems like this disease is going in different directions than it's supposed too. Where's House when you need him!!!...he gets things fixed in one hour!!!

We're asking for your thoughts and prayers for this one.

Saturday, September 18, 2010

By the fruits of thy labor...



Ta da!!!!! We threw a garden together really fast just to see if the dirt would work. Yea......I picked spaghetti squash, Blue Lake beans and sweet white corn this morning, and that was our dinner.

Oh my gosh, it tasted delicious! The corn was unbelievable. It brought back memories of our MONSTER garden back home in Newcastle.

Definitely planting next year. I even used the flowers (or weeds) because I didn't plant them....the birds dropped seeds....or the wind dropped seeds....but they were gorgeous anyway. It was a good day!

Wednesday, September 1, 2010

Poor Hayley !





Hayley has been fighting back and forth with a rash, stiff joints and off and on stomach pains for a few weeks. She has been to the doctor and the initial diagnosis was "shaving". REALLY?....shaving! Anyway, a REAL doctor and blood work, etc. came up with HSP Syndrome. All the symptoms seem to be right on. She has seen a specialist and they are watching her kidneys. They aren't sure if it stems from the Kawasaki Disease she had a few years ago or not. She was told to come back every Friday for tests because of protein (2+) in her urine. She was to do this for four months. Her rash started going away...until Sunday. It came back full force. Her stomach pain became severe and by morning (as Kim stated, "I had to take a picture to show the doctor what we saw in the toilet").

She had her appointment this morning and the doctor admitted her to Primary Children's Hospital. She had her abdominal ultrasound and blood work. She also had soup and was thrilled! The staff at this hospital is fantastic. While we were there, Dr. Good (that's a great name to have) came in, introduced himself and explained he wasn't on her team.....but is a teaching physician. He asked Hayley permission to bring in 4 medical students tomorrow to see this "unique" case. He explained what they will be asking and if it was okay for them to see her rash and touch it. She said yes. (She also said her older sister will be jealous when she finds out).

The nurse gave her pain meds in her IV, along with the steroids, and after a couple minutes, she asked us why her lips were fuzzy. (Gotta luv meds!). Luckily, she didn't need the morphine that she's allowed to have....that's a good thing!

She can have whatever she wants to eat whenever she wants it. She asked for mashed potatoes...and a smoothie...and a banana.

We'll see how she feels tomorrow after the kidney specialist sees her. What a way to start junior high this week. She just got braces, started school with a rash and stiff joints and now in the hospital. I told her she needs to become a doctor.

UPDATE: Kim just called from hospital. They're doing a biopsy tomorrow on her rash. She got nauseous and dizzy when she stood up. She only got to 1/2 of her mashed potatoes and just finished her banana before Kim called. Probably the combo of pain meds and steroids did her in. She's tucked in for the night and ready for bed (she does have her movie line-up ready for tomorrow:).