Balloons For Harley

Flowers Have Been Ordered

Thanks to all those who donated. I have ordered the flowers.



We are thinking of you during this rough time. Harley has touched many lived. She is loved by many and will continue to be loved.
SIGNED: The Cafemom Moms

Services For Harley

Harley's services- Friday, August 28; viewing @ 12:30pm with services to follow @ 2pm. Community Church of Joy 21000 N. 75th Ave. Glendale, AZ 85308.

Talked to KatieToday...

Katie said she is doing better than she thought. She is getting on the funeral stuff figured out. She wants to thank everyone for their support and donations. She said the casting lady got there right after she passed and they got a good print. I asked her if there was anything she needed and she said that she needed money to pay bills.

Tag for Balloons.

A fellow follower, Emily, has made a tag to attach to the balloons. Thanks for participating.

Flowers

I want to get a big flower display for Katie. If you are interested in helping out there is a pay pal button at the top of the screen. Thank in advance.

Balloon Release

We are going to do a balloon release for Harley on Saturday Aug. 29th at 1pm CST. The color we have chosen is purple. If you would like to take pictures and email them to me, we are going to put them together for something for Katie. My email is sissygurl_02@yahoo.com. Thanks again.

Harley has gone to see Jesus....

Katie just called me and said little Harley has passed. She said that Harley had waited until they got back(The had gone to take a shower) and then she passed. Please keep Katie and Cameron in your thoughts and prayers.

Keep Praying.

Harley had another xray done today. Her pnuemonia is getting worse. She is also seizuring and the meds are not stopping them anymore. They will probably be putting her on a ventilator soon. Please keep praying!

8-24-09~~~Updated~~~~

Harley woke up last night! Her CT scan is set for sometime this morning.


Cat scan was just done and there was no change in Harley's brain. They are goint to put off the surgery until they have to. Katie said they have moved her to a "big girl bed" so Mommy and Daddy can snuggle with her.

Update

They are not doing the surgery today. They are going to do a CT scan tomorrow and decide then. Katie says she is a little more responsive today!

Katie posted this on Myspace

Harley was basically unresponsive all yesterday besides when she opened her eyes & peeked at me twice when I first saw her and she squeezed Cameron and mine's hands once each. We moved up to the PICU where they did a CT scan and found bleeding in her brain from her brain shrinking and the veins rupturing. She also has pneumonia all over both lungs. They scheduled brain surgery today at 2pm to relieve pressure in her brain, but only if her blood can clot by then since she was on blood thinners.

8-23-09 2am Update

Harley has pneumonia in both lungs and bleeding on her brain. They are going to do surgery @ 2pm to relieve some pressure. Keep praying for her and her family.

8-22-09 11PM

I talked to Katie and she said Harley has opened her eyes a few times and has squeezed her and Cameron's hands. Keep praying for her and her family!

8-22-09 9PM

Harley and her family could use your prayers now more than ever! Harley has fallen into a sort of deep sleep and has not awoken, the Drs are unsure if she will wake up!

Please Keep Them In Your Thoughts!

8-22-09

We had our first care meeting on Wednesday morning. We were all so excited that the doctors, even the doctor representing palliative care and Hospice, never mentioned a DNR! They were all so wonderful and listened to us, GENUINELY! We made up a plan and set goals to get her home, get her on physical therapy, and get her equipment that will make our lives easier like a special 'Kid Cart' and a mesh netting for the bathtub so we can submerge her for her baths without using a newborn bathtub. They also have a neat program at PCH for music therapy. A guy comes in and sings and dances for the kids! They're signing her up for that, too.

She's been peeing very well since the catheter's been out and pooping well, too. She's now on a formula called Peptomen 1.5 that has a higher calorie count (more concentrated, basically) so they can give her less without skimping on the good stuff, so to say. They're hoping it helps with her belly still being so swollen, but so far it hasn't. They're supplementing water in her diet by giving her little bits at a time through her G-tube (one that goes to her stomach). It's not working out too well, though. When they gave her an ounce yesterday and clamped it shut (so it'd actually absorb instesd of draining out) she ended up throwing up water and stomach acid! They unclamped it and as soon as they did stomach acid was GUSHING out faster than I've EVER seen! The diaper it drains into was FILLED before the nurse even left the room! Poor baby, she just really needs the G-tube to be able to constantly drain now. They stopped the water for now and might try it again in a day or so.

The doctor has also noticed that her color is looking better! She has some days that are better than others, but overall it's gotten SO much better! We're all anxiously awaiting her blood test results to see how her liver's doing now.

Also, the last blood test they did showed lowered white blood cell counts and they were worried she might have pneumonia. We did a chest x-ray on her yesterday to check and are once again awaiting the results. Her platelet level in her blood was also low and they were debating doing a blood transfusion (she's had a few, so I wasn't worried). I haven't heard back whether they did one or not, but I'll post when I hear more.

Maybe Monday?...

Talked to Katie(Harley's Momma) today. She said that Harley's stomach is pretty bloated, but that they may get to bring little Harley home Monday. Lets all pray that everything goes smoothly.

Also, we still need $130 for the Shadow Box. We only have until Sept. 4th to get it raised or what has been collected will go back to the donaters. Please help if you can!

Fundraiser for Shadow Box

We still need $190 for the shadow box. That's just 19 people pledging $10. Come on, we can do this for Harley's mom!

Donate Here

8-17-09

Wow, alot has happened since Tuesday! I've been with Harley at the hospital, unable to update. So here goes!

First off, we moved her over to Phoenix Children's Hospital from St. Joe's on Friday. Let's just say we felt like they'd done all that they could (or all that they WOULD, I should say) do, so we figured it wouldn't hurt to get a second opinion. So far so good! They don't cater to the parents as much, (no more private rooms with our own bathroom, there's 2 patients to a room now with 1 pull out bed/ chair per patient and 1 bathroom, but ONLY patients can use it: the parent's bathroom is down the hall. Oh, and no more free family meals anymore, either...) but it doesn't matter as long as Harley's getting the care she needs.

Wednesday night her body temp actually got pretty low, SCARY low. We bundled her up with warm blankets and put a hat on her head. She looked like a little snow baby! Her temp finally went back up to a more comfortable level around 3am. Since then her temp has still been running low, but it's for the most part stable. The doctors think it's due to her brain loss. Sometimes when an infant (or anyone) has brain loss their brain can no longer regulate the body's temperature, causing fevers for no reason and also causing the body's temperature to drop for no reason.

She also went 15 hours without peeing on Tuesday; they had to put a cathedar in. After that she peed fine. The doctor said it's common for kids with any sort of mitochondrial disorder to have problems peeing or going poop because the muscles become weak, and you use your muscles to pee and poop. Today at 8am they took the cathedar out finally and she's peeing great! She's actually peeing more OUT than she's getting IN which is wonderful since she's still bloated!

They also re-started her feeds last night! They started them at 15 ml/hr and raised them 5 ml/hr (about half an ounce) every 6 hours. She's now up to 30 ml/hr! Yay Harley! She's doing great on them, too! They're proportionately lowering her IV fluids she's getting, too.

Overall, Harley honestly seems less yellow (Cameron, his mom and I ALL agreed, it's not just a figment of our imaginations anymore!), about the same bloating-wise (her belly went down then bloated back up after they re-started her feeds) and a little more tired, but when she's awake she's still alert!

Oh, and her carbon dioxide levels in her blood were apparently a little high, but not alarming. We're going to have a care meeting sometime this week, probably Wednesday or so, with all the doctors to kind of make a plan of what we'll do for Harley. Hope all goes well! I'll update as things happen. = )

8-13-09

So, Harley's liver is failing. Her skin is getting yellower every day and her belly keeps swelling pretty bad. I guess I've finally come to the realization that Harley is going to die and this is the beginning of the end. I keep praying and hoping she'll somehow be a medical miracle, and it may somehow happen, I sure hope & pray it will but it's highly unlikely. To make matters worse the doctors seem to have basically given up on her because she's dying anyways. Right now her temp is low. We loaded her with blankets and a hat trying to get her body temp back to normal. So far she's being a trooper and fighting to warm back up. We have it set up to transfer her over to Phoenix Children's Hospital tomorrow; let's just hope they can do more for her than they have been at St. Joe's. Honestly we're just hoping she makes it through the night; a low temp is not good, no matter how you look at it.

8-11-09

Yesterday they did an ultrasound on Harley's heart and the blood clot is completely dissolved! Yay! She was moved from the 7th floor PCTICU to the 2nd floor, normal Pediatric unit.

Honey Bear didn't have a very good night last night. She ran a fever of 102 degrees and they couldn't keep her Oxygen stats up. They took her off her feeds and put her solely on IV fluids because she was having such a hard time. Guess we'll just have to see how today goes...

8-10-09

Wow, Harley is such a talker! Over the weekend she was awake and alert, opening her eyes and talking to us! One night I got up to use the restroom and was quiet so I wouldn't disturb her and then I hear "Mom!" from Honey Bear! She sure knows when someone's in her room and moving around! Over the weekend I heard her say 'Mom', 'No', 'Yeah', and 'Baby' (I asked her if she wanted her doll and she said 'Baby'!). It's so exciting to actually be able to converse with her! I can ask her 'Do you want water?' and she'll let me know (we put some in a water bottle cap and pour a little at a time in her mouth).

Besides that there's good news and bad news. Good news is that the blood clot is still shrinking and the doctor said they'll do another ultrasound today to make sure the clot didn't just move. Lookin' good towards going home!

Bad news is that her liver is still failing. The whites of her eyes are turning yellow, a trait that happens due to a failing liver. They put her on a new med that'll help her liver function, I hope it helps and maybe just maybe will 'kick-start' it into working again? Ya never know...

A few pictures of Harley

This was 7/20/09
8/02/09

This is from today

Shadow Box For Harley's Mom

I have put up a fundraiser to get a shadow box for Katie. You can click on the link below to donate.
Fundraiser

8-8-09

Not too much has been going on, which is actually a good thing! The doctors are focused on getting the blood clot the rest of the way dissolved; it's on the right track, luckily! Her belly has been pretty swollen, so they upped the amount of Lasiks she's getting. She's been running fevers on and off, so she gets Tylenol as needed and they're running cultures on everything to see if there's an infection anywhere. She's been on antibiotics just in case. She's not really having too many seizures, if any at all, really! She still has some small tremors on and off, but neurology stopped by and said if we're happy with they way she is (which we are!) then they're happy and they have nothing else they want to do to her. Yay! One more step closer to home. Speaking of which... (knock on wood) the nurses have been mentioning she's close to going home! (Yay again!) She'll most likely be sent home with the Lovinox shots (blood thinners). Cameron's going to be the one to give them, I can't! Even so, we're willing to give her a few shots a day to be able to be comfortable at home again. <3

8-3-09

Internet, phones & cable have been down all day at work until now so I'm going to have to update real quick before I get off at 5:30pm. : D

Wow, what an improvement since Thursday! They put her on TPA (a risky blood thinner [but potent] that they don't normally use because of the risks) which broke her blood clot down enough to take her off the TPA and put her on Lovinox, a normal blood thinner given as a shot in her belly. It has fewer risks and she can even be sent home on it if need be.

Her seizures have once again lessened (yay!) and she's more awake, too. She was even yelling at the nurses when they bothered her this weekend and opened her eyes more! She's got her little attitude back, it's so cute! Okay, that's the quick update for now. I'll try and update again later, gotta get to the baby! = )

A little update

Harley's blood clot is even smaller! Now she's on a normal blood thinner given via shot in her belly. She is also more awake and has her little attitude back!