Zoe has bad veins. It’s a well known fact here at the clinic. Her veins for blood draws are fine but those are too small for IV’s. Whenever Zoe needs an IV or in her case the last week, a new IV because the old one quit, she freaks out and her veins turn into Houdini and pull a fantastic disappearing act. This is a real problem since her gancyclovir is an IV medication. To help combat this problem she went into the O.R. to have P.I.C line put in again. Before you say a collective “Aw that poor baby,” she is happy about it. Ecstatic actually. This means no more pokes because it has 2 ports on it so you can draw blood and give meds through it. It’s above the elbow so she has the use of both arms and hands.

The bad news recently is that the viral load is continuing to go up not down. Infectious disease has assured me that without the gancyclovir the numbers would be much much higher. In short, she’s not as bad as she could be but she’s not getting better. Her tonsils are still swollen together and she’s still running fevers. Dr. Foster from I.D. feels that this is all related to CMV but wants to test her for other things to make sure. So far all the other cultures have come back negative but respiratory was in last night and swabbed her nose to check for respiratory viruses. The general consensus is that those will all come back negative.

So I guess the important question is what the heck are these “professionals” doing if she isn’t getting better? Last night she was given a dose of cytogam. Cytogam is CMV antibodies collected and pooled from the plasma of CMV positive donors. Since they are positive that means they’ve had CMV and have made antibodies against the virus. These collected antibodies are then given to people like Zoe intravenously. The viral load is going to be checked again tomorrow and if another dose of cytogam may be given. In the meantime, ENT is working with I.D. & Dr. Boyle regarding Zoe’s enormous tonsils. Steroids are generally avoided in immunosuppressed people because they further suppress the immune system. However, because Zoe’s tonsils are “kissing” they are going to give her 1, possibly 2 doses of steroids to bring down the swelling.

Zoe’s birthday is in 2 weeks and it looks like we’ll be celebrating it here. Gabe’s birthday is Thursday and we will definitely still be here. He’s very bummed about that and I don’t blame him. So we’ve decided to get a small cake & celebrate here.

We are still at the hospital. The viral load went from 1000 to 2000 from Thursday to Monday. Zoe’s tonsils are incredibly swollen. As the Dr.’s say they are almost kissing. Her throat isn’t sore though. They took blood for cultures and swabbed her throat again because she keeps running a fever off and on.

Infectious disease projects 8 more days of IV antibiotics. Then the viral load should be low enough that she can go home with oral antibiotics. So we wait.

Ever since Zoe’s biopsy on the 9th (results were good again) she hasn’t been feeling well. She threw up 3 times that night and again 2 days later (on Wednesday). No fever, diarrhea so no one seemed concerned. Dr. Boyle kept saying “the stomach flu is going around, if she throws up again call me back.” She complained of an upset stomach but was puke free for a week.

At around 3am this past Wednesday morning (4 days ago) she was running a low temp. of 99.4 so I gave her Tylenol. She threw up later that afternoon and her temp. went back up to 100.1. I called Dr. Boyle & had to leave a message so I called her pediatrician. I felt like she needed to be seen & she agreed. She sent us to EMH to have a chest x-ray done (to check for fluid, heart enlargement, etc…) while she tried to get ahold of Dr. Boyle. Colleen called me back en route to EMH and said Zoes’ blood work from the previous Thursday was showing trace amounts of the virus that causes mono so they wanted to see her. After we finished at EMH we went to the Clinic to see Dr. Boyle. He examined her and had infectious disease take a look. Her tonsils were swollen & she had a large blister on the back of her throat but said her throat wasn’t sore. They swabbed her nose & throat and we were sent for more blood work the following morning. Colleen said she’d call Thursday with results.

I didn’t hear anything from her so I left her a message Friday afternoon. She called me back a little after 5 and said that at 4:15 her blood turned up positive for CMV (cytomegalovirus). They wanted her to come back in to the hospital for the weekend and get treated with IV Valcyte, which she had been on orally post transplant. So I packed a bag, picked up Zoe at her dads and headed to the hospital.

Here’s where we are right now: Dr. Boyle said Zoe was CMV neg. pre-transplant but the donor heart was CMV pos. Within 6 months a reaction can take place and the recipient (Zoe in this case) shows symptoms of CMV & will test pos. & begin to create antibodies against the virus. She is severally immuno-suppressed so she needs help. That’s where the IV Valcyte comes in. It’s stronger & faster than oral Valcyte and CMV can become very dangerous if left untreated in transplant patients. Dr. Sabella from infectious disease has also been today and the game plan is as follows (it’s a virus so he’s pretty much running the show right now): they’re going to retest her virus levels Monday morning. They will decide then if the levels are low enough to send her home on oral Valcyte or if she needs to stay in  hospital longer with another round of IV medicine.

I’m sure most of you are wondering what CMV is. Well here you go:  CMV Info

Mike got the hospital bill. It’s $650,000 with our portion being about $3,000. Not bad but still overwhelming. I’ve done the math and once Zoe is taking only the 3 medications she’ll stay on forever, her medications will run us about $3,600 a year. Right now it’s a little more with the extra meds. Her Cellcept and her Prograff are the expensive ones. Cellcept can only be filled from a University facility and it runs $275.00 every 3 months. The Prograff is the pricey one. It’s $200 a month. Yes that’s with insurance. The price went up $100 this year but without insurance it’s $1,000.

I want to thank everyone for their continued support. We couldn’t do this without you.

Since being home things have been pretty quiet. Zoe can’t go back to school until April (cold and flu season) so she’s home with me all afternoon until I go to work. We’ve played a lot of video & board games and worked on making bracelets and necklaces from a kit she got for Christmas. When this snow finally gives a little we’ll get out more. She’s not supposed to be in large crowds or around sick people so we stay home a lot.

She finally started rehab last week. We had an insurance nightmare with rehab. Because the insurance is through University Hospitals through Zoe’s dad they said we had to use a UH facility for her cardiac rehab. The problem with that is that UH does not offer pediatric cardiac rehab at any of it’s facilities. I got bounced around for a month before I found this out. Since they don’t offer it, we get to take her to Shaker for her rehab which is where Dr. Boyle and the team wanted her to go in the first place. It’s being covered as in-network. She goes twice a week right now and as soon as Dr. Boyle gives the thumbs up Zoe gets to spend 1 day a week in the pool. She’s excited about that.

We’re down 2 medications now. She’s still on 7 with 3 left to go away. Not sure when that will happen but we’re happy to be down 2. Her blood pressure is still perfect. She’s still on her 2 bp meds but 1 has been cut in half.

You won’t hear from me as often. As things get back to normal I have less to update on and the spring semester started for me 2 weeks ago. Between the kids, work and school I’m stretched pretty thin most days.

I do have 1 more thing to add. I received some sad news and Mike and I have decided not to say anything to Zoe about it just yet. We don’t want to scare her. Alex Courville (Zoe’s transplant friend) is back in the ICU in a coma. I don’t have all the information yet but from what I understand Alex is CMV negative and the heart she received was CMV positive. She was on a medication to kill the virus in the heart but it seems to have been unsuccessful. Alex’s body is being attacked by the virus. Even Though she takes her medicine her body is showing no levels of Cellcept or Prograff which are the 2 crucial anti-rejection drugs. I personally am devastated by the news. Alex was doing so well. She sent me a myspace message 2 days ago asking how Zoe was. My thoughts go out to her and her family. I plan to get up there tomorrow to see her. Here is a link to Alex’s site again.

http://cotaforalexandrac.com/