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
February 22, 2009 at 8:37 pm
That poor kid! And poor you. She’s been through enough it’s time to give her a break already! With this new thing that she has, has she shown any rejection to the heart? I’ll be thinking about you all. Keep us posted~!
February 24, 2009 at 10:11 am
Much love and prayers to you guys once again. I’m sorry Zoe’s feeling lousy. Thank God for great doctors and their continued support. Hugs to you all.
February 26, 2009 at 8:09 pm
I had heard abot your blog and just finished reading it. I have a 17 year old daughter who was born with aortic stenosis. She just had her fist angioplast done in January as a temporary fix until she gets older and then will have her aortic valve replaced.
I seen your comment on the bills. Have you heard of BCMH. I don’t know what the income limts are now but when my daughter was younger she was on it and they paid what our insurance didn’t and for all of her meds. We had learned about this from a Social Worker at Children’s Hosp. in Akron. In case you have not heard of it BCMH stands for Bureau for Children with Medical Handicaps. It is worth looking into.