The good news is that Tuesday night we got moved over to RMH and got the day pass for Christmas. Zoe got to come home, then go to her dads and thenn her papas before she had to be back at RMH Christmas night. She enjoyed being home.

Now here’s the bad news. We’re back at the hospital in the PICU. Last night when I woke Zoe up at 11pm to give her medicine she complained she had a headache. I gave her tylenol, put a cool rag on her head, rubbed her temples and she fell back to sleep. At 12:30 I woke up to find her leaned to one side, eyes glassy & not focused and throwing up. She was laying in a puddle and didn’t seem like she was able to lift herself out of it or wake me up to let me know she was going to be sick. I rolled her onto her side and got a towel t clean her up. Her head was turned to the left and her eyes seemed to be stuck looking up and to the left. I got her sat up but she couldn’t hold herself up so I propped her up on my lap while I called Dr. Boyle. She saidshe thought she was done throwing up so I laid her down while I woke Gabe up. Dr. Boyle wanted us to meet him at the hospital. She went catatonic again on the way to the hospital and when we got there her bp was 201/120 and they said she was having a seizure.

She got a CT Scan and is in MRI now. They also ordered an EEG for today too.  She seems fine now. Her bp is lower because they started her on a bp medicine. They think the seizure was caused by her high blood pressure which is a result of the strong heart pounding away at her kidneys. They haven’t adjusted yet. They think the withdraw from the narcotics was masking her high bp and once she was removed from all the drugs (tuesday) it started to climb until it spiked last night causing the seizure. They will know more once the MRI and EEG results come back. The CT showed no sign of clot or bleeding in the brain. Hopefully we’ll know more later.

Apparently this is common for transplant patients. It’s just one more hurdle we need to overcome before she can go home.

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Ok so here’s what’s going on: The drainage tubes came out  Thursday morning without a problem. She was up a little that night but just to go to the bathroom. She started working with Lisa from cardiac rehab Friday. Our instructions for the weekend were to walk to the fish tank every 2 hours and 3 times a day do her arm and leg strengthening exercises. She walked on the treadmill with Lisa for 10 minutes today. Tomorrow Zoe wants to double her time. She’s suddenly very ambitious.

Tomorrow we’re moving to the Ronald McDonald house. It’s a step in the right direction but still not home. Dr. Boyle mentioned a day pass for Christmas. He hasn’t decided yet and we’re hoping he says yes. Gabe will be coming to stay with us while he’s on break for the holidays. Both kids are pretty excited. We were told we need to be at RMH for 1 month from discharge. We’re 3 weeks past transplant and I’m hoping after her next biopsy next week he sees it in his heart to let us go home. Cleveland is a nice city but I’m ready to go home. So is Zoe.

Once we get to RMH Zoe has big plans. She wants to go to the mall to see Santa. She wants to visit some folks over at Rainbow and she wants to go to the movies. I’m sure she’ll come up with more the longer we’re there.

The spaghetti dinner Friday night was a big success. We pulled in a little over $4,000 which added to what we have will be very helpful in getting Zoe’s prescriptions. Thankfully Mike’s insurance is covering a very very large portion of all this but Alex’s mom Lisa was telling me that Alex’s meds are running $500 a month with insurance. Mike met a kidney tranplant recipient and I guess he was saying that his post transplant meds were running $2,000 a month. Those numbers aren’t pretty. So I wanted to thank everyone for all the support and help. I’d especially like to thank my step mom Sherri. This was her brain child and she did 98% of the work organizing it and getting donations. She did and excellent job and we couldn’t have pulled it off without her. On a side note….I need to fire my 2 accountants from Friday and you know who you are. You lovely gals added a check that was for $150 as $1,500. Boobs. I love you both anyway but my dad said I had to fire you. haha

Congratulations to our friend Alex and her family! Her biopsy showed no change in the level of rejection and she gets to leave RMH and head home to Toledo tomorrow! We’re hoping we get their room……again.

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I’m sitting here with Zoe right now.

She’s been asleep for a couple of hours but it’s a nap that I think she’s deserved. It’s not often I get to come up here and spend some time alone with her so when I do, I drink it all in. I take no giggle, snort, or eye roll (and I’ve gotten all three today) for granted.

Shortly after I got here we took a ride in the wheelchair (I pushed, she rode) down to the cafeteria and the gift shop. Zoe talked me into a chocolate muffin (naturally) and even though the gift shop was closed – the ride out was nice change of scenery for her.

Today was the first chance I’ve had to see what the doctors will allow Zoe to do. They want her to exercise those jello muscles. She isn’t fond of them and I don’t blame her. When I saw her doing the exercises, I was reminded of the old PBS shows with the little old ladies sitting in their chairs and kicking their legs out in front of them.  I told Zoe that she was doing old lady exercises, to which she eye rolled and giggled at me.

We also had to take a walk. Mommy will be glad to know Zoe got her nap in but not glad to know that she didn’t walk every two hours like the docs want. We did go down to the fish tank and watch the Circus fish (that’s the name we gave him) flip and then swim upside down to get out of tight spot he kept getting himself into. If I can, I’ll get a quick video of Circus fish doing his acrobatics and upload it later.

I think we wore ourselves out on the walk back though. We got to laughing so hard at each other… you know the kind, one person starts giggling and then you start giggling because they’re giggling, and the more you try to stop – you just giggle more?

Yeah. It was like that.

At one point we had to stop in the hallway. Not because Zoe was tired but because of the giggle fit. We really couldn’t walk and giggle at the same time anymore. So we stopped. And we giggled. And I said that if we didn’t stop giggling, we’d need the nurses to come and get us and wheel us back to the room in wheelchairs because we were giggling too much to walk back… And in my best “oh dear please help us” voice, I pretended to call out to an imaginary nurse, begging for help in getting us back to the room. Which. Was. Just. Funny. So we giggled some more.

But we did make it back, all giggled out and ready for some fun. Lunch was served and we picked at it. We played with Webkinz, and finalized two new pet adoptions there. We got a visit from Nana and Uncle Justin (looking fabulous in his Soldier outfit) and we giggled more at Uncle Justin’s ID with no hair. While we visited, we picked at lunch and played with our dolls.

We had a good day I think. Nurses, doctors, everyone seemed pleased today. I saw some color in Zoe’s face and her freckles popped out for a bit when we were busy giggling. The freckles really popped when she got mad, first at me, and then at mommy on the phone for making her do the old lady exercises.

She kept touching her eyeball today simply because it grossed me out. She tee-heed at me when I told her about Noah and his gross toddler habits.

Indeed this day has been one to remember. Maybe one day when she’s older and all of this is barely a memory. I’ll remind her of the Circus fish, the giggle fits, and the fun we had.

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We had a set back yesterday. Zoe woke up at 4am with a high fever and severe pain in her legs. I mean couldn’t move her legs severe. They ordered an x ray which showed fluid in the hip joint. They ordered an ultrasound which showed equal amounts of fluid in both hip joints. The Dr’s were thinking it was an infected hip joint so they took her to the O.R. to pull some fluid samples from both joints. The fluid was cloudy which led them to believe it was an infection so they put drainage tubes in both hips and sent the fluid to be cultured. They started her on antibiotics just in case and since it was late last night and all the post-ops were closed we were send to the PICU for the night for recovery.

This morning we find out that the fluid didn’t appear to contain any bacteria but we’re still waiting on the cultures to verify that. However, she stays on the antibiotics just in case. Better to be safe than sorry with her. Dr. Boyle seems to think the problem is mechanical. She laid around for so long that chances are her joints didn’t have enough fluid to accomodate the sudden onset of movement. So when she started really moving like she was it caused the joints to get inflammed. So in addition to the antibiotics they are giving her ibuprofen for the inflammation and steriods.

Zoe had her biopsy this morning. We got the results this afternoon. She showed a level 1A rejection. That means there was minimal rejection with no tissue damage. The only better result would be no rejection which is virtually impossible. At this stage there is always some amount of rejection. The level she measures at is the smallest level and therfore the best. They also checked antibody rejection levels and her level measured at 0. Can’t get better than that.

The drainage tubes come out Thursday morning and she has to remain in bed until then. So it’s a minor set back but her biopsy results were the best were could ask for.

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OK this is for my sister. She already knows but this is my public apology.

I broke Zoe’s site. Yup. It was me, the professional blogger (how ironic?)

What happened was when I created the post about the fundraiser and listed the donations we received, I had actually copied and pasted the list from a Microsoft Word document. Well, when you do that, Microsoft inserts all of its own coding and thus messes up the coding in Wordpress. Silly me, thinking that Microsoft Word and Microsoft Internet Explorer wouldn’t get along and fight like they did. They’re created from the same family so maybe it’s a sibling thing.

At any rate, I’m sorry I broke the blog for a day. I hear there was wide spread panic and chaos in the streets over it. We should be back to normal and all is right in the bloggy world again. If not, leave me a comment and I’ll get the fabulous Erica, who discovered this mistake, to take a look at it.

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I’m having trouble viewing the site too.

Apparently Zoe had some fluid build up around her heart. It was worse from Wednesday to Friday. Today she had another echo and it’s much much better. A very minimal amount. Dr. Sterba felt good about it. He said he can go home and not worry about Zoe all day now. We walked to echo and she complained the whole way. It wasn’t a long trip by any stretch of the imagination but she was asleep when we were told echo was ready for us. I’m such a mean mom. I made her wake up and walk her little booty down to the test. I’m obviously some kind of sadist.

The group living in the lobby area here on floor 4 have moved on so I think we’re going to make a trip to the fish tank today. She wants to be lazy. She does well once she gets moving but getting her moving is easier said than done. I think she’ll be less lazy once she gets home. So let’s cross our fingers she continues without complication and her biopsy Tuesday shows only minimal rejection. I’m not looking forward to a stay at Ronald McDonald house. I didn’t want to go there anyway, but after reading Alex’s blog I REALLY don’t wanna go there. I’m clicking my heels together. “There’s no place like home. There’s no place like home.”

On a sad note I’m sorry to say that Hayden Nelson passed away yesterday morning. If you haven’t been there yet, please visit his caringbridge site. He was an amazing little boy and quite the fighter. He will be greatly missed.

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I’ve been informed that some people are having trouble seeing Zoe’s site the way they are used to.

Unfortunately I don’t have a fix for it but I was able to find out that the people who are having trouble are those who are using Internet Explorer – and we don’t really know why because it’s likely that you’ve been here a hundred times before today and never had a problem.

The only thing that I can recommend is to be patient with us while we figure it out or download Mozilla Firefox, which is another Internet Browser. From what we can tell anyone with Firefox does not have any problems viewing Zoe’s site.

I apologize to anyone who’s trying to see the most recent posts, we’re working to straighten this out!

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I can’t tell you how excited I am… OK, I can and I’m going to. Since Zoe entered the hospital we’ve been hard at work putting together a benefit dinner for Zoe and her parents. Donation letters have gone out, my step mom has pounded the pavement talking to area merchants, friends, family and coworkers have offered their time to work the benefit, my dad has offered his pool table up as the temporary home for donations, items for auctions and an assortment of odds and ends, I’ve emailed my connections and used the power of the Internet to receive donations, and finally… FINALLY… things are pulling together in a way that I can only describe as incredible. I know that there has been far more done than those few things but it’s late at night and this is what I’m thinking as I’m typing (and the picture of my dad’s pool table strewn with toys, sports items, hair care products, knitting items, stuffed animals… it makes me smile!).

Oberlin Inn has generously donated the spaghetti for the dinner, East of Chicago Pizza in Oberlin has donated the spaghetti sauce, Orlando Bread Co. is donating rolls, salad from a local store, handmade cakes, pies and deserts… and that’s just the beginning!

This is a run down, off the top of our heads, of the companies that we have received items from SO FAR!!

There is more still coming! If you’ve got some time, read through the list – especially if you are planning on coming. Some of the items will be auctioned off and some will go up for raffle.

Cleveland Indians: Autographed photo with certificate

Tickets to local Morning Show: That’s Life with Robin Swaboda

Cleveland Metro parks Zoo tickets: (4) courtesy passes worth 40.00

Regal Cinema tickets: (6) movie passes worth est, 48.00

Subway: (5) tickets for 6 in subs approx value 25.00

Puffers flower shop: $25.00 gift certificate

Time for Treats: Doggie Treat Gift bag 7.50

Ginkos: Christmas tree ornament 8.00

Dave’s Army surplus: Swiss Army knife 40.00

Aries Salon: Shampoo/Gift card for free haircut 30.00

Smith furniture: 2 balls of yarn 16.00

Oberlin bookstore: Sweatshirt, bookmarkers, and 2 tiny ducks that quack 30.00

Lake Erie Monster’s Hockey club seats (4) $100.00

Cleveland Cavaliers: Autographed hat with certificate

Columbus blue jackets: Autographed hockey puck and picture both w/certificate

Hand crafted Yard Art

IGA: $20.00 certificate

Cheesecake factory $25.00 gift card

Basket of stuff animals

35th Anniversary Barbie (in box w/book)

Maddy’s Tie Chairs: Child’s Tie Chair (so unique! This is a child’s chair with the seat made completely of men’s ties! It’s beautiful!)

Detanglez: Gift basket to include a 20.00 card,

Advanced auto parts: bucket with car care supplies

Amy Avon: basket with Christmas stuff

Cedar Point two tickets

Locke’s: Poinsettia

Village Market: Fruit Basket

Pat Catans: Yarn Craft basket

Bronze Tableware for 6 in Wood case

Harley Davidson Stein – Collection series

5 pc luggage set

Cleveland Browns Gift bag: nylon bag. License plate holder, T-shirt

Christmas comforter and shams.

Several pampering/fun baskets

Longaberger basket and bear

$20.00 Cub Cash from Build a bear

Autographed basket ball Ben Wallace (Cleveland Cavaliers) w/certificate

Handmade jewelry, including bracelet and earring sets, necklace & earring sets, necklaces. Beautiful pieces!

Marble Run Set for children from http://www.oh-toys.com

Nanastar book, CD and plush doll from http://www.nanastar.com

Bill Doraty Kia: Detail Package totaling $139.00

There have been many people asking me if we are still taking donations – to that I say Yes! We are asking that items either be new or handmade. We have numerous baskets that are being auctioned off and each one is filled with some fantastic items (some with foods and chocolate!!! YUM-O!). So you may see them here on the list and you may not as I’m really not sure how those are being put together.

A lovely woman from PA sent me a gorgeous handmade quilt and asked that it either go in auction or to Zoe directly. I took the quilt to Zoe and she immediately decided that she wanted it. I’ll get pictures of that posted but to Pat S. in PA, thank you!

If you are still planning on sending items, we need to have them by December 17th at the latest (our benefit is on December 19th and you can get those details here: http://www.zoesheart.com/?page_id=40 and here: http://www.zoesheart.com/?p=49. Anything we get after that date or does not get sold in the auction, will likely be added here and turned into an online auction.

OK so you’ve read through the list and you want to donate still; here’s what you need to know!

We need to have no later than December 17th. You can email me first if you like: nicholesmith AT verizon DOT net (remove spaces and insert an (@) and (.) for the words. Items can be mailed to:

Nichole Smith, PO BOX 122, West Salem, OH 44287. If you need a street address, leave a comment or email me and I’ll get it to you.

I’m going to try and get some pictures up of some of the items… maybe of the pool table too??

I can’t tell you what everyone’s generosity has meant to me, to Zoe, her parents, grandparents… it’s AMAZING and even that word doesn’t do everyone who has been involved justice.

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Everyday is a pretty much the same, except when it isn’t.

She’s been unhooked from her Iv’s. She still has the broviac in her abdomen but she gets 1 med a day into it and it only takes an hour so the rest of the time she’s free to roam. She walks a little better, with a little less support everyday. She eats a little more everyday and is awake more and getting back onto a normal schedule again as far as sleeping goes.

Back in the ICU, when she was on the vent, she had a touch of plebitis (inflammation of the vein) from an IV. It was pretty far up her right thigh but the IV was pulled as soon as it was noticed. The vein was pretty hard but the cultures all came back negative so it wasn’t an infection just a reaction to the IV. Why am I bringing this up now? Well it seems that the vein hardening is working it’s way back down the leg and it’s left the vein pretty tender. Flexing the muscles around that vein and pressure on her calf cause her pain. Because of that she’s been trying not to put her right foot flat on the floor. She needs to work that muscle to loosen it up and help alleviate the pain. She’s not real keen on this idea because it hurts so to force her to do it I brought her tennis shoes in and she’s been wearing them when she goes walking.

Physical Therapy has been working with her and she starts cardiac rehab Monday. She’s gonna hit the treadmill for a little walk and see how she does. She’s not looking forward to it.

She has her first biopsy Tuesday the 16th. If that looks good we may be going home Tuesday night. If not, we’ll either stay here a little longer or head over to Ronald McDonald House until her next biopsy which is 2 weeks after the first 1 (4 weeks from the transplant).

Here’s some pictures from the last couple weeks:

Fresh off the vent

First trip out of the ICU

Bambi

Finally smiling

Very tired after our first long walk to the playroom

Visit from Santa

very cool reindeer glasses

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Zoe graduated from the PICU tonight. She’s been moved back to the regular unit. We have a huge room (yay!) and I get to sleep in a bed tonight. Since she can’t have a roommate (too much exposure risk) so the nurses ooched (yes it’s officially a word) the other bed closer to Zoe so I can sleep and still be close. Our new room is M40-14.

She walked down the hall today and physical therapy worked with her some too. That helped her graduate. She looks great and feels better. Her voice is getting stronger and she’s starting to get her appetite back.

On a not-so-Zoe note: Our new friends, Alex and her parents, moved to Ronald McDonald House today (in fact, we have Alex’s room). She came over to say good-bye to Zoe and my girl got a little choked up. She’s come to really like Alex and would like her to come visit for her birthday in March. Alex had a biopsy today and it showed very little rejection of her new heart. If her next biopsy goes well she may be going home on the 22nd, just in time for Christmas. Turn those powerful positive thoughts in her direction please. We may be home for Christmas and I would like the same for our new friends.

On a side note, Zoe is now a local celebrity! We were recently interviewed by our local newspaper- you can read the entire story here: http://www.chroniclet.com/2008/12/06/elyria-girl-gets-a-heart-for-the-holidays_122/

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