Saturday, August 22, 2009
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!
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.
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.
Friday, August 21, 2009
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!
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!
Tuesday, August 18, 2009
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
Donate Here
Monday, August 17, 2009
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. = )
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.
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