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.
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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.
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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.
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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.
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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.
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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.
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There was a light at the end of the tunnel…..too bad it was a faulty light bulb illuminating a dead end. (sigh) What are you gonna do?
Zoe’s viral count was 700 on Tuesday after the cytogam & steroids last weekend. Her fever was gone and her tonsils are much much smaller. You can actually see between them. The Doctors were prepared to let her go home on oral valganciclovir yesterday providing the numbers were lower than 700. They wanted to make sure the low count wasn’t a fluke because of the cytogam. Well guess what……it was a fluke. The count yesterday was 3800. Needless to say she is still in the hospital. They are going to repeat the test Monday. I forsee a higher number. The genotyping of the virus should be back next week. That will tell us if it’s a resistant strain of CMV. My money is on resistant. She’s been on the ganciclovir for 2 weeks now and without the cytogam her numbers keep increasing. From there I don’t know what the plan is. Honestly I don’t think the doctors know either. Her birthday is Friday and they say they want to have her out by her birthday. I’m not counting on it.
She has a biopsy Monday so I’ll probably update again Monday night or Tuesday…….from the hospital since that’s where we live again. Please have my mail forwarded.
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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.
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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.
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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
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