Thursday, December 31, 2009

Surgery Today

The day has finally come. Ella's surgery is today. Although it is a major and invasive surgery, we expect her to be able to come home from the hospital tomorrow or maybe Saturday.

They took her back for surgery at about 7:30a. The surgeons will be removing her ureters from her bladder and reimplanting them in a different place where when her bladder is full it will press against the ureters and prevent it from refluxing back to the kidneys. We expect to hear from the surgeons about once an hour until the surgery is over at about 10:45a.

Hopefully, this will be our last visit to Children's Hospital until Ella's follow-up visit in about three months.

Here's to a happy, healthy new year for 2010.

Sent via BlackBerry

Tuesday, November 24, 2009

No more waiting

While visiting Mississippi with Amanda, Ella started having fevers and spots returning to her tongue. It was the day before they flew back, so Amanda treated her with Tylenol, Motrin and vigilance. The day of their return flight, Ella's fever spiked at 104.6°F and never dropped below 100°F. I dropped the boys off at Soda & Pop's to spend the night and went to get my girls from the airport. We went straight to Children's Hospital to have Ella checked out.

They took her temp (it was about 101.5°F, I think) and took a urine sample to test for a UTI. The immediate results came back inconclusive, so, since she could keep down fluids and seemed to respond to the Tylenol and Motrin routine, they prescribed antibiotics and sent us home while the cultures developed. We got the results today (after having to do a little arm-twisting of the folks at Children's).

Although they weren't certain exactly which strain she had, Ella was developing what appeared to be a pretty nasty UTI. The antibiotics the ER prescribed should handle it though, but this means we have to meet with urology again and schedule Ella's surgery.

Our appointment with the urologist is on December 9th and they say they'd schedule surgery about two weeks out from there. That puts us right at Christmas time. Oh joy.

Wednesday, October 21, 2009

Yay! It's the flu!

Great news! Ella just has a simple case of type a influenza. That's right, common garden variety flu (ironically, the same flu I got a flu shot for to protect her from). They did say she had been developing another UTI, but the antibiotics given to her in the hospital nipped it in the bud.

And so now we're home again with new antibiotics and just for good measure the swine flu vaccination.

Monday, October 19, 2009

Back again and I wish it was somehow related, but good luck anyway

We're back in Children's Hospital. Ella's fever spiked around 103.5°F yesterday afternoon and she was projectile vomiting like Jack used to before his heart surgery. Add a little general fussiness and we decided it was time to make a run to the hospital for the UTI tests. Amanda had a gut feeling this was going to be another UTI and took Ella straight to Children's Hospital instead of going to closer-by Littleton Hospital.

After a brief wait in a waiting room full of rudely, coughing children and their parents, Amanda and Ella were taken back to a room for further examination and testing. Ella got another IV line and the tests came back with a very elevated white blood cell count and indications she did in fact have another UTI. They've re-admitted her and have been battling her fever all night. It's being persistent (at one point it was over 104°F). Urology has been contacted and we expect to see them today at some point. We also expect, based on our last visit, that they'll be recommending and scheduling her surgery this time.

I received word this morning that there is a young Australian sailor named Jessica Watson that set sail yesterday afternoon in an attempt to sail the globe solo. Jessica is 16 which makes the story interesting in its own right, but what caught our attention was the fact that her boat is bright pink and has "ella" all over it.

(Click the image for the full-story)

I wish I could say we knew Jessica Watson or that she had "ella" on her boat in honor of our little girl, but truthfully this is the first I've heard of Jessica Watson (thanks, Alan) and her pink boat named "ella's pink lady." We wish Jessica the very best of luck on her journey and hope that it is as successful and uneventful as we hope our Ella's upcoming treatment to be.

Tuesday, October 6, 2009

Geographic Tongue and Fever

Just wanted to take a moment to update you on Ella's latest escapades.

During one of our last hospital stays (I can't remember which one because they're all sort of running together), the doctors told us Ella has something called geographic tongue. It's something that's hereditary, in this case she inherited it from Amanda, and is harmless and is different for everyone. In Amanda, we'd always thought it was an allergy to citrus fruit, pineapple in particular, because the spots would always appear on Amanda's tongue after she'd eaten a citrus fruit, usually pineapple. In Ella, it's an early warning indicator that something's amiss and she's not well. Before both times we ended up being readmitted for the urinary tract infections (UTIs), she had white spots on her tongue that almost looked like thrush. We were also told to monitor her fevers for temperatures above 101°F and any time she exceeded a 101°F tempt she needed to be tested for another UTI.

Well, last week the spots showed up again and she felt a little warm, but every time we took a temp it was either normal or only a degree or two high, so we waited and watched and it turned out she'd caught a little cold so we had nothing worse to deal with that a little snot-nosed baby (oh such a totally normal thing. Yay!).

On Sunday, the spots again returned and this time her temp started climbing and we were sure we were going to be back at the hospital for my birthday on Monday. About 7pm we took a temp and it showed 101.6°F. Ella, despite the mild fever and spots on her tongue didn't seem at all unhappy, but to be cautious, we decided to compromise between taking her all the way out to Children's Hospital and staying home and doing nothing by taking her to our local Urgent Care facility.

After spending an hour and a half at the Urgent Care facility where they did nothing but take Ella's temp (99.7°F) and traumatize her trying to insert a catheter, Amanda ended up having to take Ella out to Children's Hospital anyway.

The ER at Children's Hospital was filled with sick kids (yes, on a Sunday night it was busy) all hacking and coughing up crap and none of them wearing masks or covering their mouths. Fortunately, Ella was taken back fairly quickly (but not until after Amanda had shooed away one nosey, snot-nosed little ankle-biter and had given the voodoo priestess stink-eye to its mother). The pros at Children's Hospital quickly and effortlessly inserted the catheter and took a quick sample. The sample came back clear and her other tests showed that poor little Ella just had a minor sinus infection. They said normally they'd prescribe a mild antibiotic and send her home, but since she was already on pretty heavy antibiotics they said they'd just send her home with instructions to continue her antibiotics as prescribed.

So it was a long, harrowing night all for naught, but Amanda and Ella were home and in their own beds for the night which was wonderful. I suppose a couple positives came out of it though:

1) The staff at Children's Hospital told us that in the future for a simple UTI test, we could/should just go over to Littleton Hospital and their pediatric docs could handle the draw. Littleton is reasonably close, so it won't be a long drive out to Children's Hospital unless absolutely necessary.

2) We learned that Ella's geographic tongue is definitely an indicator of her being ill and it's not limited to UTIs. Poor kid. She'll never be able to fake her way out of going to school by claiming she's sick. All we'll ever have to do is ask her to stick out her tongue. :)

Monday, October 5, 2009

T-Shirts in and being delivered

The t-shirt order came in over the weekend and after thoroughly enjoying seeing them, we separated them out to be distributed. The local orders all went out over the weekend and today and were hand delivered. Everyone that's getting them seems to be happy they bought one. And I believe all of the out-of-state orders were shipped today via USPS so look for those soon!

We want to extend a very special thank you to everyone that has supported us in this effort to support ourselves. "Give a man a fish and you have him fed for a day; teach a man to fish and you have fed him for a lifetime."

Although we appreciate each and every donation made no matter how large or small, there is definitely a sense of satisfaction we receive for having provided something in return for your generosity (and you have been very generous, thank you).

Please refer your friends and family to us when they tell you ho awesome your shirt is and ask where they can get one. Let them know that Amanda's also making custom beaded jewelry now with the ellafan theme.

We've also considered getting some of those silicon/rubber wristbands with the ellafan logo and the phrase "Are you an ellafan?" imprinted on them. Would you be interested in those? We're trying to decide if they'll be simply hot pink or pink & black. Which would you prefer?

Again, thanks as always to everyone for their support, whether it be financial or moral.

Tuesday, September 29, 2009

Sample t-shirt

We got our initial t-shirt order in and our supplier, "A Personal Stitch", got us a sample today. The t-shirts are exactly as I pictured. Yay!

Just a little more detail on the t-shirts now that we've decided on the actual shirts. They're Hanes, 100% cotton, tagless t-shirts.

Here's a close-up of the logo on an actual t-shirt.

This first order is scheduled for delivery on Monday (10/5). Order yours today!

Sent from my mobile device

Wednesday, September 23, 2009

The lottery you don't want to win

Ella Kate has been discharged from the Children's Hospital today. Yay! Yet, as always, good news for Ella is almost always tempered with something less positive.

The bacteria cultures came back today and showed that the bacteria from the UTI that hospitalized her less than two weeks ago was not the same bacteria as what brought us back this time. In fact, the bacteria she had this time is an extremely virulent type that responds to only two different antibiotics. The good news? One of the two antibiotics that this particular bacteria responds to is the one the hospital started her on yesterday. Yay!

Dr. Campbell, the urologist not the cardiologist, finally stopped by to see Ella today and declared her able to go home, but said he because she got this strain of bacteria he expects to see her back again within a couple of months and that if that happens he will definitely recommend we proceed with the surgery at that time. We're hoping for the best and that this course of antibiotics and the new one they've prescribed as a prophylactic will keep her happy and healthy enough to get through the year, but he's not holding his breath.

It's her smile that helps. She's such a good natured baby. The nurses and staff at Children's Hospital were happy Ella was able to go home today, but were also sad to see her go. She brightens up every room she's in.

So it's back home we go. Back to having our whole family under one roof. Back to hoping we can keep our beautiful little girl healthy for as long as possible.

Sent from my mobile device

Sunday, September 20, 2009

It's official we're in the hospital AGAIN

Ella's been re-admitted to Children's Hospital for her fourth time in her short five months of life (she actually got the same room we just left nine days ago). The UTI from last week either never fully cleared up or has represented. Urology has been contacted for consultation to determine if we're going to try to treat with antibiotics again or if now it's time for surgery.

As long as her fever's under control, Ella seems happy and unaware of anything being out of the ordinary. I, on the other hand, am working on not being angry and bitter about Ella having to go through all of this still/again. If you're following me on twitter or Facebook, you'll see my ranting.

We'll keep everyone posted on new developments. Thanks for your love and support.

Sent via BlackBerry by AT&T

Heading back to Children's

Ella's fever spiked to 103.3 so we are heading back to Children's Hospital. We gave her tylenol and it went down a little but not much. Please pray its something simple and not another UTI...that could be bad news for us. We will keep everyone posted and have our phones on us. Little Ella doesn't deserve this.

Keep your fingers crossed

Ella has a fever again this morning. 101.2. We've given her a small dose of Tylenol and are going to monitor her, but we're probably going to end up at Children's Hospital again tonight.

In the meantime, we're trying enjoy the beauty places only like Colorado have to offer. We're headed up to Mt Evans for some fresh air, a nice walk near Echo Lake and to see the aspen trees turning. Hopefully, Ella's fever will abate and we won't have to spend another evening at Children's Hospital.

Sent via BlackBerry by AT&T

Tuesday, September 15, 2009

Buy Now Button Update

Looks like I've got the button updated to handle shipping correctly now. If you are ordering from somewhere in Colorado, there is no shipping fee (we'll hand deliver it to you), but anywhere else in the lower 48 will cost $2 per t-shirt. Don't forget if you order through PayPal, although tax is included in the cost of the t-shirt, we're using the tax function of PayPal to offset the 2.9% + 30¢ PayPal charges per transaction.

We had hoped checks could be made out to "ellafan fund" but the banks are being a pain in the a$$ about that. So, until we work that out, if you're going to pay by check, please make checks out to Ella directly and we'll be able to submit them to our account on her behalf.

Thanks again to everyone for your support.

So grateful!

I just want to take a moment to thank everyone that has either purchased a t-shirt through the buttons on the left here or made a donation. Your love and willingness to help us support our darling baby girl means the world to us.

Just a couple of quick comments about those buttons on the left.

I have a personal business account with PayPal (got the debit card and everything), but that means that to receive money, especially through buttons like those on the left, PayPal charges us a nominal fee of 2.9% + 30¢ per transaction. So, the $16 for local orders or $18 for out-of-state orders does include tax, but the 2.9% "tax" the form shows when you order is to help cover that transaction fee.

Also, for some reason, if you are ordering just one shirt it's charging you a $2 shipping fee on top of the $18 (which was different from the $16 local fee to cover shipping). I understand that sometimes just making the effort to purchase the shirt to begin with was a stretch on your budget and we don't want to take advantage of your generosity. So, accordingly, if you would like us to refund that extra $2 we will gladly do so. Just let me know here or in response to the e-mail we're sending everyone affected.

Thanks again everyone. Your support means the world to Amanda and me and Ella.

Sunday, September 13, 2009

Have I got a story to tell you!

Hi there. My name is Ella Katherine. I was born on April 26, 2009, coming 6 weeks early after deciding I was done staying in Mommy's tummy. When I was 3 days old, Mommy and I were getting ready to go home when a Doctor noticed I had really weak femoral pulses, so decided to be safe and got a scan. It turned out that I had a problem with my heart, called Coarctation of the Aorta. That same day Mommy and I got to ride in a cool ambulance across town to Children's Hospital. When we got there, we talked to a lot of Doctors, who told Mommy and Daddy I needed surgery really fast to fix my heart. The next day I went to sleep and the doctors made my heart work better.

I got to stay in a really cool room in the NICU for almost a whole month. Before the doctors fixed my heart, bloodflow to my lower body was slow, so I got what is called necrosis in my bowels, so I didn't get to eat for two whole weeks! Finally, I got to go home for the first time. I loved being with my 2 brothers, Jack and Josh. Then a couple of weeks later, Mommy and my Aunt Beth noticed my heart scar looked red. I went to the Doctor and I had stitches that were supposed to dissolve but didn't. So the doctor pulled one out. I went home, but still didn't feel good. Mommy took me back to the hospital the next day. Turns out I had developed a pretty bad staph infection in my wound. They had to put me to sleep again and get the rest of the stitches out and redo my scar. I stayed in the hospital again for another week. I missed my bed and my brothers. We finally got to go home!

Just last week I started feeling bad and running a high fever. Mommy took me to the Doctor and he couldn't figure out what was wrong with me. We went back to the hospital and they did a bunch of tests on me. I had a urinary tract infection, but the doctors thought something else was wrong. They did more tests and found out my bladder wasn't working right. I have what is called VUR. It is a reflux disease where my bladder pushes my peepee back into my kidneys. I have level 4 to 5, which is the worst kind to have. My kidneys can get really sick if I don't get my bladder fixed. The doctors wanted to wait a little while before doing my surgery so I can get bigger and hopefully a lot healthier. Sometime next year I will probably have my surgery to repair my bladder and kidneys. I know the doctors will take good care of me. Please ask God to keep me safe and let me grow big and strong so I can play with my brothers...
they are so much fun!