It’s been a long year. We’ve had reasons for celebration and reasons for tears but amidst it all we’ve come a long way. Zoe had her 1 year biposy on December 20th. They went in through the neck, as usual, as well as through her groin. The recovery took a little longer. She had to keep the leg they went through straight & flat for 6 hours post-procedure. Her cardiac output is good, all her pressure are good and the results were double 0′s. Those are perfect results if you’re curious.

Zoe goes back to see Dr. Boyle in February and she has a biopsy in April.

I hope everyone had a safe and happy holiday.

One year ago today we celebrated Zoe finally getting a new heart. She came out of surgery rosy cheeked and red lipped. It’s been a roller coaster year.  Double hip infection, seizures, CMV, and not to mention the hospital stays. She’s grown taller and wider. She had to have a whole new wardrobe this year because she hasn’t needed new clothes in 2 years. Her hair is longer and she’s a 2nd grader now.

We’ve been blessed and we know it. Amidst all out happiness I can’t help but think of the other family out there somewhere with an anniversary of their own. One year ago today a family lost a child. I don’t know who & I don’t know where yet but I’m eternally grateful for the gift they’ve given me. I can’t thank them enough.

I also can’t thank enough our faithful Zoe’s Heart  followers. You are the reason this site exists still today.

Flu season is upon us. I’m seeing schools closed for illness & donations are down at the blood bank because everyone is sick. Frankly I’m a little nervous. Zoe has gotten her seasonal flu vaccine but not her H1N1 because no one on the planet has any (that may be a slight exaggeration but you all get my drift). Gabe & I haven’t gotten either because, again, no one on the planet has any. Hopefully we’ll hold out until early November.

Trick or Treat is tomorrow and Zoe is especially excited because my boyfriend & his daughter will be joining us. I need to thank someone for Zoe’s costume & I’m soooooo sorry but I’m not sure who. If you read this, and you are who I’m thanking then please step up and let me know! Last year I was emailed a gift certificate for Zoe through http://www.princesstimetoys.com/ . I hadn’t used it and money was tight this Halloween so I’m glad I saved it. Zoe will be Glitter Kitty. The gift certificate covered the costume, petticoat, and shipping. I ordered it Thursday & received it Monday. Talk about fast. It’s hanging in the closet waiting for tomorrow night. Every night before bed Zoe asks to look at her Glitter Kitty costume. lol I’ll be sure to post pictures of her in her costume soon. So thanks so much to Princess Time Toys for the gift certificate. Zoe & I are most grateful!

I apologize for the delay in updating everyone. School started for both kids and myself and we got a little caught up. Busy, busy, busy.

Zoe is doing well. She’s getting over bronchitis but it’s been like any other kid with bronchitis. Trip to the pediatrician, antibiotics & cough medicine (which she refused to take because it smelled bad). She’s almost completely over it and just in time to because she has a biopsy on Tuesday Ocotber 13th.

We’re coming up on our year which drops her risk some so we’re pretty glad.

These past few months have been such a change from this time last year. She plays gym (apparently she’s a dodge ball champ, if you ask her anyway) and I’m working on getting her signed back up for dance with Miss Colleen at the YWCA. She hasn’t danced in 2 years because she was too sick but she plans to return to ballet and try to hand, or feet rather, at tap. Soccer may be a possibility in the spring or cheerleading, whichever she decides on. This time last year she was so tired and throwing up at random. She missed the Halloween walk at Carlisle Reservation that we do with my dad, sister and her kids every year because she was throwing up. She gets to go this year and it’s all she can talk about.

I was to thank everyone for their continued support. We are working on fund raising ideas for the new year to help offset the cost of her medications. Her prograff (anti-rejection that will she take for life) is $200. That’s with insurance by thw way and I anticipate tht cost rising to $300 come January. Check back often. I’ll try to update more regularly, but if you don’t hear anything that means there’s nothing to report and that’s the best news we could have.

Zoe has been doing really well since her last bout of CMV. Her PIC line came out mid June and every CMV test we’ve had since has been negative.

She had an appointment with Dr. Boyle yesterday. Everything is fine for once. She’s due for a biopsy in about 3 weeks.

Her turoring is going well. She has her last session tomorrow. She’s worked very hard and will be a 2nd grader on September 1st when school starts again.

It is with a very heavy heart that I post today. Early this morning Alexandra Courville passed away. She was Zoe’s friend who received her new heart 2 weeks before Zoe got hers. Aly had been back in the hospital for the last 6 months. Her new heart wasn’t working out and she had recently been re-listed. She suffered a stroke earlier this year & had undergone brain surgery in May or June (I don’t remember exactly). Her kidneys had failed and she was removed from the transplant list because her body was simply too week. Yesterday she made the decision to be put on a mechanical heart, The Berlin Heart http://www.childrensmemorial.org/depts/cardio/thoracic/berlin-heart.aspx, to sustain her while she regained strength enough to be put back on the list. Aly didn’t survive the procedure.

My family holds Aly’s family fondly in our thoughts. Aly was the strongest, bravest person I’ve ever met and she was only 15. She is greatly missed.

So I took Zoe to Dr. Danzinger from I.D. yesterday. Her liver enzymes are high, platelet count is low, white count is high. She took blood & ran more tests. Had Zoe’s liver enzymes or platelet count been dramatically worse she’s would have been admitted for a few days (like I haven’t heard that before) to be on IV antibiotics. The white count looked better & so did her platelet count. Liver enzymes were higher but not enough to warrant keeping her right now. Dr. Danzinger put her back on Valcyte & we go back Tuesday to have all the tests repeated. However, they are also running another virus count. It should be back tomorrow. If it’s really high we will be heading to the hospital. Dr. said for the weekend but i don’t buy that for a second. The last time I heard that mess our weekend turned into 3 weeks.

I got a call last week from Colleen. She said the blood they took during the biopsy on the 8th showed positive for CMV again. Infectious disease said the level was at 1000. They wanted me to take her for some blood work to have the level checked again to make it isn’t doubling & tripling like it did last time. We had the blood drawn yesterday and the test runs Mondays, Wednesdays & Fridays so it should be run tomorrow & hopefully I’ll hear good news from Colleen by Thursday. Zoe doesn’t feel sick. She has a little cold again (courtesy of me I think) but other than a little congestion/cough she feel fine. I checked her tonsils last night & they look fine too. Apparently ever since she heard me tell her dad that the virus showed up again, she’s been checking her own tonsils obsessively at home, school, everywhere with a mirror & decent light. Poor thing. She does not want to go back to the hospital even though she has friends there. Poor Ally is back. She was home for a minute & then she started to show rejection again so she’s back & hooked to an IV 24/7 according to her mom. Zoe’s little friend Melanie (another transplant girl) has been there for going on 14 weeks now with what appears to be rejection. When we were in for Zoe’s biopsy she and Mel played for awhile & her mom said she was starting to show signs of improvement. I’m hoping both of Zoe’s sisters in transplant get better & head home soon. I’m also hoping we don’t join them at the Clinic.

I apologize for my neglect of the site. Zoe has been doing wonderfully and even went back to school last week. With life back to normal it’s been difficult to find time to update.

Her last   about 3 1/2 weeks ago and the results were the same as they have been. Good. She had a cold a few weeks ago but even though her white cell count is “concerningly low” she was able to fight it off herself. She’s due for another biopsy in about 2 1/2 weeks I believe.

I must say I’m a little frustrated with the medical staff right now though. The day of her last biopsy was a long day as usual. Zoe & I both fell asleep once we got home and the phone didn’t wake us up so I missed Dr. Boyles’ call with the biopsy results. He wasn’t pleased and I got my proverbial butt chewed on via voice mail. Here’s my frustration: After the biopsy she was supposed to stop her antibiotic for the CMV and her lasix. Dr. Boyle neglected to mention that to me. I read it a week later in his report to her pediatrician. I had to call Colleen to confirm. Over a week ago I put in another call to Colleen checking to see if Zoe’s appointment was scheduled yet since it should be the following week (last week) & asking if Dr. Boyle would approve soccer or tennis lessons (had to have her signed up by last friday). No return call. No doctors appointment, no sign-up for tennis or soccer. I had to call Colleen again today because Gabe has strep throat and they were together last night and this morning so she was exposed to him while he was symptomatic. They are separated for the night since he’s contagious for 24 more hours. No return call yet. Why is it okay for a Doctor to ream someone a new behind for not answering the phone (for all he knows I was in the restroom) but it’s perfectly acceptable practice to not return phone calls from the patients parents or schedule appointments or tell someone about medication changes? I wish I made 6+ figures a year. Then I too could get away with being rude.