It’s late and I am working on some projects but I couldn’t help but come over here and let you all know that while Zoe and Chrissy have been through hell and back this last year (and are in the hospital again, as I write this), once again, Chrissy has yet to amaze me.
In the midst of working as many hours as humanly possible, seeing her girl through a heart transplant and trips back and forth to the hospital, Chrissy graduated from LCCC with not one but TWO associate degrees. She graduated this month with an Associate of Arts and an Associate of Applied Science. She is the first of us to graduate from College and doesn’t plan on being done any time soon.
This fall she returns to LCCC through the University Partnership to attend Bowling Green State University and receive her Bachelor’s Degree in Biology.
She told me on the phone that she missed the Dean’s list by a QUARTER of a point, but in the grand scheme of things that matters little. I’m very proud of her!
Please feel free to drop your congratulations and good wishes here in the comments. I know it would mean a lot to her!
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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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Last week I saw an interesting project starting online. It’s called Why Moms Matter. I saw it and said… Oooh I know someone.
Right away I KNEW my sister was a mom that mattered. She’s been a huge inspiration to me and I’ve watched her grow and change so much in the last year and I could not be more in awe of her strength and her beauty and how she’s handled everything that has been given to her – whether it’s something she’s wanted or not.
You could assume that this has to with Zoe but in so many ways it does and in just the same number of ways, it doesn’t. On one hand, I can’t imagine what it’s been like to be in her shoes now or when Zoe first got sick as a baby. On the other hand, I’ve always known how amazing she is and continues to be and I always tell people, “You should meet my sister. She’s awesome”.
Chrissy is beautiful. Hands down. The thing is that I wanted the world to know how fanfreakintabulous she is.
So back to the Why Moms Matter – I had to nominate Chrissy. I’ve always been in awe – she’s always been MY HERO, she completely ROCKS in my kids eyes (she’s far cooler than I am), and I can’t imagine her not in my life. I feel immensely blessed to have her for a sister.
I can go on and on about my sister but I’m afraid if I do, she’ll come along and delete this post… so I better get to the point.
The people behind the project Joshua Unfried and Danielle Smith (no relation that I know of!) has selected Chrissy to be their first recipient of their Why Moms Matter project. I got the email at three in the morning and almost woke up the house.
Now for the most amazing and unbelievable part – We will be on Blog Talk Radio tomorrow (Friday March 6th) at 3:30 EST. You can listen to Chrissy and I talk (HA!) HERE. Plus, my sister will be featured at Extraordinary Mommy tomorrow also.
Since I know it’s impossible for everyone to meet Chrissy, this is the next best thing I could do to share her with the world. I’m hoping she doesn’t mind too much.
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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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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.
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