Claire's Story

Some people have asked; What happened?  How did this all start?

We kept an Online Journal from June 6th, 2007 through July 17th, 2007 on the  
www.caringbridge.org website.  It was a great way to communicate with everyone.

Here is how it started….

Claire was born on September 3rd, 2003.  From the time she was 2yrs old until she was 3.5 yrs old Claire has been complaining about these neck pains.  We have been taking her to neurologists because we thought she had a brain tumor or something wrong with her spine.  For a while we thought they were migraine headaches...we even had her on medication to help them (it did not work).  The neck pains were completely random although they did tend to happen more in the morning when she would get up and when she didn't want to do something we wanted her to do.  Some times we even thought she was faking it.  She was always the little baby and most of the time she got her way.  She loved to be carried and she loved to cuddle with you.  There were times that she would not have a neck pain for a week, other times she would have them every day.  She had EEG's done, MRI's, Cat scans, they all turned out fine.  No issues.  The week before we were in the hospital the Neurologist at Strong said she was a typical little 3yr old.  She was right from a neurological standpoint.  Whenever the doctors listened to her heart it sounded fine, no murmurs...perfect little heart. 

Then on May 31st, 2007 in the morning she collapses and passes out. (We originally thought it was a seizure.)  I was at work and Lisa was at home.  Lisa thought she had died...she called 911 and within a minute Claire woke back up.  The ambulance rushed her to the hospital.  The paramedics noticed that she had a low heart rate and suggested the ER doctors look at her heart.  They started asking us some questions...does her head sweat a lot? - yes, She is a really active child?  - no.  They decide to do an EKG .  Then within minutes they ask for a CardioEcoGram.  After about 10 minutes the wonderful technician called the cardiologist down to the ER. Within in about 2 hrs Claire was admitted to the hospital.  (Listen, if you’re not getting any attention in the ER that is usually a very good thing....when you are getting lots of attention something is really wrong with you.) The Cardiologist thought Claire might have some kind of cardiomyopathy potentially restrictive cardiomyopathy.  She also thought something might be wrong with her coronary artery.  So within about 6 hrs it was pretty clear that Claire had major heart issues. She schedules a Cath to be done on the following Tuesday.  That is when we would find out what is really wrong with her heart.

Different kinds of Cardiomyopathy can be treated with drugs and you can live a pretty normal life for many years. But there is less known about restrictive cardiomyopathy and it is usually more severe than other types. 

 The doctor recommended that we stay 48 hrs in the hospital to monitor her.  Keep in mind Claire looks perfectly fine, her heart function and vitals are nearly perfect.  The doctor even admitted later that it seemed kind of funny to keep her in the hospital, but thought it would be better just to watch her a little. (thank goodness she did) Claire is up and running around, coloring, playing with the toys, but then Friday night she gets another neck pain. Like all the others, it last maybe 30 seconds and if you hold her she returns to complete normal activity with in a few minutes. They have her on a remote monitor and they capture her heart rate on the computer. Her doctor takes one look at the tape and tells us she is going to move us to PICU and we are not going anywhere until after the Cath.  It turns out every time Claire has one of these neck pains; she is having a life threatening arrhythmia, but for some reason she is able to kick herself out of them.  For a year and a half she has been cheating death.  Looking back, stress, anxiety, sometimes physical activity would all bring on these "neck pains".

With any type of cardiomyopathy, the sign that you need a new heart is when you have an arrhythmia. None of the doctors, in both Rochester and NYC, have ever seen the neck pain symptom associated with heart problems.  They still can't really explain it.

Claire is perfect Saturday, Sunday, and Monday.

The last video of claire.





 

On Tuesday she goes in for the Cath. They take five biopsies. The results are not good.  Lisa and I are hoping they will find something else that can be fixed; unfortunately what they found was a severe case of restrictive cardiomyopathy.  The only hope for Claire was a new heart and she needed it immediately. 

At about 2pm on Tuesday the doctors tell us they have a bed for her at Mt Sinai and she needs to go first thing in the morning so she can get put on the heart transplant list.  We had about an hour to make up our minds on where to go for a heart.  Mt Sinai has a great program with Rochester allowing us to do our outpatient work in Rochester after the transplant.  It was a great decision to come to Mt Sinai.  They are wonderful to work with.

As Claire tries to wake from the anesthesia, her heart is so weak that it can't stop the arrhythmias so she "crashes".  In others words her heart gives out and goes into cardiac arrest.  The first time they give her a bunch of drugs and bring her back.  It happens three more times that Tuesday night. Twice they had to give her heart compressions to keep her going.  Every time she started to wake up she would crash.  It was the longest night of our lives.  Unbelievable painful to watch!!  You just kept praying she would make it until morning when they could fly her to NYC.  Time truly stopped that night...I would put my head down on her bed for what I thought was 20 minutes and it would turn out to be one minute.

At 6am they decide to put her on the breathing tube and take over.  She is on a flight at 10am to go to Mt Sinai.

Needless to say we were thrown into this very fast and with no warning.  It's amazing how fast things can change.  You think about the thousand other things that could have caused her neck pains, and it turns out to be her heart.  Now she will be one of only 300 kids in the US this year to get a new heart.  What are the chances???

She transports just fine, but once they get her settled into her new bed, she crashes again.  Lisa and I are not at the hospital yet, so when we arrive the doctors are all waiting for us.  They are very serious and are trying to explain how severe the situation is...finally we tell them that we watched her die four times the night before and we know she needs a new heart so there is no need to tap dance around the issue, let's just sign the paper work so she can get listed ASAP. Looking back they must have been shocked.  It was just so matter of fact.  Claire had great timing, because from that point forward everyone watched her very closely.  She had great care and nobody on that unit wanted to lose her again. 

It is amazing to see her sleep now and have no worries when she wakes up.  It feels so good to get a second chance to kiss her and hug her.  It even feels good when she tells you not to rub her head anymore. 

when she tells you not to rub her head anymore. 

This is the start of the daily journal…

 


THURSDAY, JUNE 07, 2007 03:17 PM, EDT

 

Claire is stable, but still in critical condition. She is on a ventilator so her heart does not have to work as hard. They are keeping her as still as possible. Any kind of activity has caused too much stress on her heart. She gets life threatening arrhythmias (sp?).

Lisa and I are doing much better today than yesterday. We finally got some sleep. I slept in the room with Claire and Lisa slept in the waiting room with another man. Which is, to my knowledge, the first time that has ever happened?

 :-)

We have friends here today visiting us, which has made the transition much easier. We are not alone!!

Joey and Emily are fine, we are trying to keep their lives as normal as possible. We have lots of support back in Rochester and all over.

The support and help from everyone is amazing. It's completely overwhelming. We have no idea how we can ever thank everyone.

We will give another update tomorrow.

 


FRIDAY, JUNE 08, 2007 08:54 AM, CDT

 

BIG NEWS - Claire was officially added to the heart transplant list last night. Now it is just a matter of waiting for a donor. She is O+ blood type which they say makes it a little more difficult to find a match. There are two other kids here waiting for a heart, but one is a baby and one is a teenager, therefore they will not be competing with Claire. Some people have had a new heart within one day and others have waited an entire year. We will be taking it one day at a time.

Claire had another good night. She has been in essentially the same condition since Wed 6/6 at 2pm. Which is very good? The doctors and nurses are taking great care of her and are being very careful not to upset her.

Lisa and I are doing the best you can be. We both had another good night sleep. We are going to have more visitors today, so even though we are in the big city we are not alone. Let me tell you, it has made the transition much easier. Yesterday, Lisa went to a friend’s house to escape for a few hours. She took a shower and had a good dinner. You have to walk away once in while or you will go crazy staring at the heart monitors.

Joey and Emily are doing fine...they are in very good hands back home.

Please feel free to call or email. We will do our best to get back to you.

 


FRIDAY, JUNE 08, 2007 10:12 AM, CDT

 

I forgot to mention that she is listed in the 1A level. There are 7 levels, with 7 being the lowest. There is a 1A and a 1B. You can't get any higher than 1A. Which is really good because it gives Claire the best chance to get a heart, it's bad because she really needs a new heart.

Thanks again for all the words of encouragement, thoughts and prayers.

 


TUESDAY, JUNE 12, 2007 05:28 PM, CDT

 

We want to thank everyone at VWR Science Education for buying a Have Heart wristband. I can't believe you raised $2800 in one week. AMAZING. It goes to support a terrific cause. I think Tom's note below says it all. You are truly a special group of people.

Lisa and I just went and bought our own today.

If anyone else is interested visit:

www.childrensheartfund.net

It has all the info there for making donations to Mt Sinai and to how to get a wristband.

Thanks Again!!!

From: Tom Rosenecker
Sent: 06/11/2007 04:31 PM EDT
To: Noel Vache
Cc: MDL NA SciEd Staff
Subject: Have Heart Wristbands

All - one thing that has always amazed me during the past 15 years I've
worked for Sci Ed is how our team responds during a time of need. We have
gathered all the requests, and I will place the order tomorrow morning for
1,400 wristbands ($2800 donation to Children's Heart Fund - Mount Sinai
Hospital)

This is absolutely incredible. On behalf of Mike, Lisa, and Little Claire
(and all the children and family this money will help serve) - thank you
for your generosity and support!


Tom

Thomas P. Rosenecker
VWR Education
VP Innovation
716-874-6020
www.vwreducation.com




WEDNESDAY, JUNE 13, 2007 10:47 AM, CDT

 

Day 14 / Day 6

Claire had an OK night. She is stabilized and is now in the Cardiac ICU. They are very strict in this part of the hospital. We have to call from the waiting room every time we want to go in and see her. The doctors feel much better having there, under their control. Claire definitely likes the attention.

My brother is in town for the day, it's always good to talk to someone else.

We posted some more pictures. They are a little old... I will be able to post new ones next week, when I get my hands on my personal computer.

It is so good to hear from everyone. Everyday, Lisa and I look forward to reading the guestbook.

Keep praying.

 


THURSDAY, JUNE 14, 2007 10:09 AM, CDT

Day 15 / Day 7

Claire had a good night. She is back to the same condition she was in on Monday (that is a good thing). I actually spelt in a hotel room last night. First time in almost two weeks that I slept on a real bed. Lisa stayed at the hospital. We continue to get lots of visitors which helps pass the time. It is so good to see everyone.

Thanks for all of the Birthday wishes. I know everyone was hoping we would get a heart yesterday. I was only praying for a good day for Claire. This is going to be a very long journey and you can only take it one day at a time.

Thanks for all of the postings. Like I keep saying they really help.

 


FRIDAY, JUNE 15, 2007 09:52 AM, CDT

 

Last night was not one of Claire's better nights. She is fine right now, but as four doctors have told us this morning....She NEEDS a new heart.




 SATURDAY, JUNE 16, 2007 11:53 AM, CDT

 

P.S. I added new photos to the site. They limit it to just 12 pictures, so I will do my best to rotate them.

 

Day 17 / Day 9

Claire had another difficult night. She is ok now; the doctors have done an amazing job bringing her back. She seems to do fine all day, but in the middle of the night she struggles.

We are still waiting for either the Berlin heart or a new heart. It's hard to just sit and wait for the day to go by. This can take 30-60 days or longer. You just wait. It's all out of your control.

I know everyday, everyone is hoping for better news. I wish I had some good news to post. I really don't mean to drag everyone through this..it is an emotional rollercoaster and it can be a very long process.

I only hope that if you do read these posting everyday that you will appreciate what you have. Don't take anything for granted. There are lots of people that have to deal with some pretty tough things...take the time to reach out and help them. There are lots of kids in this hospital in worse shape than Claire. If you catch yourself sitting on the couch watching Paris Hilton go to jail, stop and think that it might be a good time to pick up the phone and call a friend.

Sorry for preaching...but it does make me feel better. :-)

Please enjoy the beautiful weekend. Have some fun. Take the kids to the park...give them ice cream!! Take lots of pictures. Enjoy life...you only get one chance.

We appreciate all of the phone calls, emails, postings, cards. It really helps. Keep praying for a new heart.

 


SUNDAY, JUNE 17, 2007 10:02 PM, CDT

Day 18 / Day 9

What a day! Sorry it took so long to post an update to the journal. Every 24hrs seems like an eternity. Where do I begin? Many, Many Miracles happened today. Your prayers are truly paying off. We still need more, so don't stop.

Last night Lisa and I went to Mass at St Patrick's church in NYC, had a quick dinner and then went back to the hospital. The plan was for me to sleep until 1am then go back to the hospital and stay with Claire. For some reason she seems to have bad episodes early in the morning and I thought I might be able to help some how?? When we get the hospital at 8pm the doctors tell us her condition has gotten worse and they want to place her on ECMO (life support) in the morning at 7am. Tough news to take, but we knew it was the right thing for her. At that point we could not leave her. Lisa and I stayed up all night holding her hand and she did not have any episodes. At about 6am the doctors decide to call off the ECMO and wait another day, because she was very stable throughout the night.

Another teenager shows up in bad shape at 8am and its all hands on deck. I get kicked out of the ICU so Lisa and I went back to the apartment to sleep a little and shower. Our amazing friends John and Brenda flew in for the day, so Lisa went to see them and I slept some more. Around noon I get the dreaded call from the hospital. Claire crashed again and they decide to put her on ECMO. Her timing could not have been better. She waited all morning until they finished with the boy next door before she had any problems. The head surgeon was on his way out the door, but forgot something and came back. Otherwise he would have been gone. Any earlier and it would have been a disaster, any later and you would not have had the very best surgeon doing it. Another Miracle!!

She is stable right now and the doctors are very pleased. The life threatening episodes she has been having can't happen now because they have taken control of her heart. So maybe tonight Lisa and I can get some sleep all of the doctors said they will sleep better tonight also.

Claire looks so much better today than yesterday.

Yesterday an artificial heart (MEDOS) became available at John Hopkins. Another Miracle!! This is similar to the Berlin Heart. They are shipping it to NYC and they plan on giving it to Claire on Tuesday morning. Once on this machine she can wait up to a year for a new heart. After a few days, maybe a week, they will be able to wake her up and remove the breathing tube.

What a rollercoaster...I know life support sounds scary, but she needed it and she is now in better shape than she was yesterday. The doctors actually said she is now the most stable patient in the ICU...hey we will take small victories when we can!!

We had another home cooked meal with the Jannings...it was amazing again. Elizabeth's chocolate chip cookies are incredible and I gave most of them to the night crew at the hospital. They loved them!!! Maybe she will post the recipe on this site.

Taking one day at a time!! We have been so fortunate with all of these miracles. Please continue to pray!! thanks for the postings...

 


MONDAY, JUNE 18, 2007 05:55 PM, CDT

Day 19 / Day 10

 

Claire had a great night and day. Today, when we were sitting next to her she started moving her hands and she would hold onto our fingers. It felt good to talk to her and have her respond by grabbing your finger. It's the best she has looked in weeks.

The MEDOS machine arrived today and the doctors are all set for the operation tomorrow morning. It will take all day so don't look for another posting until tomorrow evening.

Lisa's best friend Kara is in town for a few days. it's so good to see her. My parents flew in today and are staying the night. Dan and Missy are watching the other kids. Nice to have friends and family in town.

More prayers tonight...Claire has a very big day tomorrow.

 

 


TUESDAY, JUNE 19, 2007 07:49 PM, CDT

 

Day 20 / Day 11

Claire now has a MEDOS heart!!!! What a long day. I know you have been waiting a long time to get a journal update, but I can tell you it felt much longer on this side waiting to post an update!!! :-)

She looks so good. The doctors are very pleased with how well the operation went. Around 6:30pm we got to go in and see her. She is still sedated, but over the course of the next few days they are going to try and wake her up. It is absolutely overwhelming!

It was a long day. Lots of emotions. We had lots of visitors to help us through the day. My parents were here in the morning and then a bunch of lisa's friends showed up. It was a great way to pass the time. It is so nice to see people you have not seen in so many years.

I can't tell you how much it means to read the guestbook entries, we look forward to it everyday. We wish we could talk to all of you live.

We continue to be impressed with the entire staff at Mount Sinai. They are all brilliant, humble, personable, and caring. It makes this whole experience so much easier.

Keep the prayers coming...for those of you in Victor I wanted to let you know about this...

Please join friends and family for a special prayer service for Claire Wednesday evening at 7pm at St. Patrick’s church in Victor. Carol Shepherd and Laure Blazey are working on some very special details that will surely inspire and uplift this very supportive community of friends and family.

More prayers the better.

Now we wait for a new heart....one day at a time.

 


WEDNESDAY, JUNE 20, 2007 05:52 PM, CDT

 

Day 21 / Day 12

Another big day!!! Claire opened her eyes today and around 3pm they took out the breathing tube. Just a few minutes ago she was eating ice chips out of my hand. AMAZING!!!! I even got my little kiss.

Lisa and I are so excited!!

Claire is still coming out of sedation and she will be more awake tomorrow. At some point they want her to start eating and sitting up. Within a month she could be walking again.

We still need a real heart. The doctors actually declined an offer yesterday. They said it was too far away. This is good, if she is getting offers that means she is very, very high on the list.

Thanks for the prayers, the guestbook entries, the emails, and phone calls. Lisa and I have no idea how we will thank everyone for the enormous support we are receiving.

 


 


THURSDAY, JUNE 21, 2007 01:06 PM, CDT

 

Day 22 / Day 13

We finally got in to see Claire this morning. They took her off the foley and removed some of her drainage tubes from the surgery. The doctors continue to be impressed with her recovery.

She woke up late this morning and finally spoke. She did not say "Hi" or "I missed you" or "I love you" noooo she says "Please, may I have some apple juice." Her throat still hurts, but she has this cute little whisper.

Check out the new pictures. Lisa's feeding her some jello. She loves it. I also put up a photo of the VWR (Science Kit) team in Buffalo. They all bought Have Heart bracelets and took a picture with the bracelets on and their arms in the air. The team sent a huge photo of it to Claire and it now hangs in her room. The team at Mount Sinai were so excited to see it.

More good news...Claire was "offered" another heart yesterday. But someone closer and longer on the list got it. The doctor thinks she is probably 2nd on the list now. It's really good to get two offers in the same week. This is a process that could take several more months.

Thanks for the service in Victor last night. That meant a lot to us.

By the way...it's easier for me to write in the first person, but Lisa is usually right next to me as I type these messages. I get to type because I think I'm faster. She is the one telling me what to write most of the time. Lisa has been so strong through this process. She is the most amazing person I have ever met!! (obviously, she is not next to me now.)

Have a great day and pray for all the other kids in the PICU too.

 



 


FRIDAY, JUNE 22, 2007 04:38 PM, CDT

Day 23 / Day 14

Wow...Claire has been on the waiting list for 2 weeks.

Another good day. She is really tired, but when she wakes up she is all there. She will stay up for about 30 minutes then take a 2hr nap. We feed her a chocolate chip cookie and some yogurt today. She loved it!

We definitely have the old Claire back...last night Claire told me "No more kisses Daddy!"

Lisa, Kara Turner, and I donated blood today. It was really easy. We have set it aside for Claire.

I had some friends and coworkers stop in last night and today. So nice to catch up with everyone.

Have a great weekend. Enjoy the summer.

 


SATURDAY, JUNE 23, 2007 07:01 PM, CDT

 

Day 24 / Day 15

Another good day for Claire. They continue to take her off the medications. There are now only a four lines instead of 12 lines going into her IVs. The doctors continue to be happy with her progress. She slept most of the day. Yesterday the nurse said, it is good she is eating, but that won't last. She was right. Claire has no interest today in eating. She is very grumpy, which the nurse said would happen. "all kids go do it." She seems very uncomfortable. I guess you would be if you have been laying in bed for almost 20 days. The only thing she likes now is to have her legs rubbed. They are sore from no movement.

Someone asked me if she is completely off the sedation...I don't think she is yet, because she has not asked one question about the two pumps sitting on her chest.

The night before, she woke up in the middle of the night and kept asking the nurses for Frosty. They thought it was one of her stuffed animals...what she was looking for was a Frosty from Wendy's.

We went out and bought a DVD for the room so she could watch all of her favorite movies. That is keeping her occupied while she is awake. She really likes watching them.

Lisa and I had a special visitor today. The social workers put us in touch with a family in NYC that had an 11 yr girl get a heart transplant in 2001. She is now a beautiful 17 yr old that is about to go away for a month to be a counselor at a summer camp. They told us their story and gave us many helpful tips on how to handle what is coming next.

Missy and Aunt Diane are bringing Joey and Emily on Tuesday...we can't wait to see them. Hopefully Claire will be much stronger by then.

We definitely need to get a heart...it is really hard to sit in the room and know that the only thing keeping her alive is this big machine. It's still hard to believe this is actually happening. We keep waking up thinking that this is all just a big nightmare.

We have a new appreciation for organ donors. Lisa and I were thinking that one thing we could do is help spread the awareness that donated organs can save a life. With today's medicine organ transplants are very successful.

 


MONDAY, JUNE 24, 2007 7:25 PM, CDT

Day 25 / Day 16

Claire had a good night.  She was awake for an hour this morning.  She is still pretty quite.  I told her the other day not to talk much, because her throat hurt; now she won't say anything.  She looks much better...the doctors want her to try to walk tomorrow.  I'm not sure she is ready for that just yet.  Lisa and I are looking forward to a quiet day today.  We are tired!!  Giving blood, lots of guests, sitting in the hospital, it all wears you out.

 



MONDAY, JUNE 25, 2007 10:25 PM, CDT

Day 26/ Day17

Last night was another quiet night for Claire! Quiet is quite good in here. The smaller number of doctors in and out the better! One of the doctors just told me she hasn't had to be in Claire's room once today.

She did have a bit of a fever last night and the doctors are treating her for an infection. They warned us that this would probably happen. As of this morning, her temperature is back to normal. Hopefully a sign that they have a handle on it.......well we got interrupted several times and never had a chance to finish the posting today at 3pm.

It's amazing how fast things can change in the ICU. Claire's "infection" in her lungs got much worse around 5pm and at 6pm they decided to put the breathing tube back in. It happened very quickly and it was a very painful process to watch. Feels like we are taking a big step backwards. What a rollercoaster!! The doctors said it was not going to be easy. She was having a hard time oxygenating her blood. They are not sure whether it is related to a potential infection or to a blood clot in the lungs. Blood clots are very common with the mechanical hearts.

She is stable and sedated again. She seems to be resting better tonight than she was this morning. It's not going to be easy to explaining to Joey and Emily that they can't see their sister tomorrow. Just when you thought you had turned the corner...

Pray for a heart!!!


TUESDAY, JUNE 26, 2007 05:42 PM, CDT

Day 27 / Day 18

This morning the doctors decided that there were too many clots developing in the right pump. This is the pump that feeds the lungs. They think the issue with her lungs were probably related to a blood clot. So this afternoon they performed a procedure to replace the right pump. Don't ask me how they do this, but somehow they can do it. It's better to have clots in the right than the left. The left pump feeds the body, so the clots can go to your kidney's liver or brain. Clots are definitely an issue with these artificial hearts. It happens to almost every patient. You are always living on the edge.

We just found out she came out of it good. It's scary to sit and wait, the anticipation is very painful. We can't see her yet, so we are spending some time with Joey and Emily. Diane and Missy brought them into town today and tomorrow. It feels sooooo gooood to see them and hug them. Not easy to be away for three weeks.

We would still feel much better if she had a heart...but you can only take it one day at a time.


THURSDAY, JUNE 28, 2007 11:08 AM, CDT

Day 29 / Day 20

Sorry for no posting yesterday. The craziest thing happened yesterday, if you saw the news you know the upper east side of NYC had a blackout. We happened to be in the upper east side. I was in the hallway on the phone and around 3:30pm the lights go out. So the electricity goes out, not a big deal, no air conditioning for a while. But when your daughter is on a mechanical heart that is plugged into the wall, electricity takes on a whole new meaning. I ran as fast as I could back to her room, not sure what I was actually going to do, but I felt better being there. Of course the machines are plugged into the emergency back-up powered "red" sockets. Claire was fine as well as the other patients. I'm pretty sure my blood pressure hit a new high.

They took the breathing tube out yesterday morning. This was a big relief. Claire looks great, but she is a deep depression. She can talk, but won't. She understands what you are saying, but will only lightly move her heard for yes or no questions. She does not like to look you in the eye, but she is watching everything around her. Right now, Lisa is reading her a book that she picked out. The doctors say this is very normal and it may take another week for her to come around. It is a side effect of all the drugs she is on as well as the traumatic experience she has been through.

Missy and Diane brought the kids down and stayed an extra day so they could go in and see Claire. It was great having the kids together again. We took them to the Empire State Building and Times Square. We also rode the subway, which they thought was pretty neat. We had lots of laughs, which was refreshing.

It was tough to say good bye this morning. The plan right now is for them to come down again next week with Lisa's dad.

Lisa has wanted to get her hair cut for the past 6 weeks, but has not had a chance. Yesterday, she finally went to a NY stylist. She wanted an inch, but the Stylist thought she should have a NYC summer cut and he took five inches off. She looks great, just with very short hair.

Another day closer to a new heart.


FRIDAY, JUNE 29, 2007 12:00 PM, CDT

Day 30 / Day 21

Claire had a great day yesterday. It was actually one of her better days until about 8pm last night. One of the patients next to Claire develop a very, very bad infection so they decided to move Claire to an isolation room. This means she has a closed room with her own ventilation system. Very few visitors are allowed and her nurse stays in the room most of the time. This was done as a precaution, because if she gets the infection they have to take her off the transplant list until she recovers. They didn't want to take any chances. They are also treating her for the infection just in case. We were so nervous to move her...they had to unplug all of the machines (battery back up) and move her down the hall. You hold your breath hoping the battery back up works.

It's nice and quiet in the new room and there is less commotion so she has been able to sleep much better. She had a good morning today. She actually spoke for the first time in a long long time. She said "ouchie". At least that is what I think she said. Last night she would frown and whine every time Lisa left the room. That is a very good thing, because before that she did not care if we were in the room or not. The doctors let Lisa lie in bed with Claire yesterday...she (Claire) fell asleep instantly. She loved having Lisa in bed with her.

Have a great weekend.


SATURDAY, JUNE 30, 2007 01:48 PM, CDT

Day 31 / Day 22

In the ICU you never know what you are going to get. All day yesterday I thought Claire was doing very well. She started to say a few more words like "I want Mommy" and she would scream/cry which is good because she is more awake now. I was pretty upbeat. Lisa on the other hand was worried about her breathing all day. She was very nervous. Call it a Mom's intuition, she was right. We went to a late dinner and when we got back around 9:30pm the doctors and nurses were concerned with her low oxygen levels. Claire was breathing real hard and was getting a ton of oxygen, but her blood gases kept coming back low. They ordered an x-ray and a CardioEcoGram. What they found was her right lung had collapsed and she had some fluid on the left lung. Around 2:30am they put her back on the breathing tube. This would help stabilize her and then they could apply the pressure to blow up her lung. Claire has been pretty upset about this...she keeps biting the tube and fighting against the nurses.

This is very typical and very routine for kids to go through this process. Why does this happen? Well, with the sedation it makes it more difficult to take deep breaths and you don't cough enough so your lungs start to collapse and once that starts to happen it just gets worse. It sounds really bad, but once the breathing tube is in they just blow the lung back up. As long as she takes deep breaths and coughs to get the junk out her lungs will be fine.

They are going to run more tests today to decide if they need to drain the fluid from the left lung. Like I keep saying, this is a rollercoaster ride.

There will be more ups and downs in the days ahead. Keep praying. The sooner we get a heart the better.


SUNDAY, JULY 01, 2007 09:12 AM, CDT

Day 32 / Day 23

So we get another one of those dreaded phone calls at 12:03am last night from the hospital.....but this time it was to tell us Claire has a heart coming!!!!! We are so excited. Lisa and I jumped up and came into the hospital. We originally thought it would happen around 6am, but it has been delayed until sometime around noon. The delay is because the family donated all of the organs. The heart is the last one to go so they have to wait for everyone else. They keep the body working to keep the organs in good condition. Once they remove the organ they have 6 hours to put it in.

We still have a long way to go, but this is what we have been waiting for!!

Pray for the family that lost their child, pray for the doctors and nurses, pray for little Claire to accept the new heart.

It is a very big day!!

We need more prayers than ever today.


SUNDAY, JULY 01, 2007 09:12 AM, CDT

Day 32 / Day 23

So we get another one of those dreaded phone calls at 12:03am last night from the hospital.....but this time it was to tell us Claire has a heart coming!!!!! We are so excited. Lisa and I jumped up and came into the hospital. We originally thought it would happen around 6am, but it has been delayed until sometime around noon. The delay is because the family donated all of the organs. The heart is the last one to go so they have to wait for everyone else. They keep the body working to keep the organs in good condition. Once they remove the organ they have 6 hours to put it in. The good news is the heart is coming from NJ, nice and close.

We still have a long way to go, but this is what we have been waiting for!!

Pray for the family that lost their child, pray for the doctors and nurses, pray for little Claire to accept the new heart.

It is a very big day!!

We need more prayers than ever today.


MONDAY, JULY 02, 2007 11:04 AM, CDT

Day 33 / Day 1 of a new heart

I have not posted anything since I really don't know what to say. Claire received her heart yesterday afternoon, but it has not gone very well since then. The operation was fine, but the new heart is not functioning properly. The left side works fine, but the right side is a little "sluggish". Can you believe after this long wait we get a heart that is not working right? Claire is in critical condition, but the doctors are doing everything they can to help her maintain a good blood pressure. It was a very long night, but she made it. She is actually doing a little better this morning than last night. I hate to even write this, but it truly is touch and go right now. The doctors are taking hour by hour, pretty much the same as we did all night.

Lisa said this morning that "Claire is just going to do it her way".

On the positive side she has been awake many times throughout the night. She would open her eyes and move her arms and legs. She would even shake her head a little bit when you asked her yes or no questions. (by the way she wanted to watch Clifford this morning.) She also wanted us to read her books throughout the night.

I know everyone wants to talk to us, but honestly we just can't talk right now. Just pray...really hard.


MONDAY, JULY 02, 2007 04:09 PM, CDT

These are very tough times. We cannot express our gratitude for all of your thoughts and prayers!!!


Claire's condition has taken a turn for the worst. She is now on ECOMO (life-support). The doctors and nurses have not given up and neither have we. Claire continues to fight, but we have a very long road ahead of us. It will take a miracle.


I'm not sure how we arrived at this point... it is all happening so fast. The next 24hrs will be crucial.


Just pray for the miracle.


Day 34 / Day 2

Claire is still fighting. She had a good night considering the circumstances. The doctors were able to come off some of the medications, although not as much as they wanted. It is a careful balance. Some things are better and some things are worse. You take the good with the bad. From a medical standpoint it is too difficult to explain everything that is going on right now, so I'm not even going to try.

They are basically trying to give her "new" heart a rest right now. Maybe today, Maybe tomorrow they are going to see if it will start working again. They slowing take her off the ECOMO machine and let her heart take over. If it does then we are potentially on a good road to recovery. If not, then if the rest off her organs are in good enough conditions they will relist her for another heart transplant. We do not have much time being on ECOMO.

The nurses have said they see patients come back from much worse than this.

Like I said yesterday, pray for a miracle.


Hi Everyone!

I know Mike is the one who usually writes...but just had to write something myself. I haven't read the guestbook in 2 days thinking it would be too hard and emotional for me. I am so glad something persuaded me to read this evening! This is exactly what I needed!

I can not begin to tell all of you how you keep all of us going each day. Your love and support is amazing and infinite! Thank you soooooooooo much. I feel so rejuvenated and ready to tackle the days ahead. You all talk about how we have touched your lives, but we will never be able to tell you how much you inspire us!!!

Thank you all for everything!!!!! We love all of you and are the luckiest people in the world to be surrounded by such wonderful family and friends. We are truly blessed!

Love,

Lisa


THURSDAY, JULY 05, 2007 09:38 AM, CDT

Day 36 / Day 4

Claire had another good 24 hrs. Actually, she is doing much better than she was on Tuesday. It's still going to take a miracle to get her home, but everyday she gets closer. They have now taken her off most of her medications and she has been able to maintain her own blood pressure. (All very good) She did not pee yesterday, I know we had lots of prayers, but I think Claire will do it when she wants to do it. We need another couple of days of rest and then they are going see if her new heart will work.

It was amazing seeing the kids yesterday. Lisa stayed with Claire last night, while I took the kids to see the fireworks. Then we switched I went to the hospital and Lisa slept with the kids. Last night before I returned to the hospital, I was lying in bed with the kids. I told them to close their eyes and tell me what they saw. I told them the only thing I could see is fireworks. Joey said he could only see was a big bridge (we watched the fireworks from under a giant bridge). Emily said she saw mom and dad and Claire walking in the park. And then she fell asleep.

Pray for Claire's new heart to be strong, pray for it to work. Pray for little Claire to continue to have the strength to fight.

The prayers are helping. They have to!!!


THURSDAY, JULY 05, 2007 11:51 PM, CDT

Quick update...

Sorry so late, I wanted to make sure I caught those that stay up late and the early risers for a few extra prayers tonight and in the morning.

All day Claire has continued to improve. They have taken her off most of her meds and have drastically reduced the ECMO machine. Her heart has started to take over.

Tomorrow morning they are going to try and test the heart more and if it does well then they will completely remove her from ECMO. This will take most of the morning, so don't look for another posting until early afternoon.

This is a VERY, VERY BIG moment. If it works she makes a huge step towards recovery. If not, then it is a very long dangerous road.

Don't worry about the pee tomorrow...pray for a strong heart!! Pray harder than you have ever prayed.

p.s. Claire pee'd twice as much today as yesterday. Much better, but still not enough. The doctors/nurses and I argue about what it is...they say it's just "bladder sweat”. I think it is pee. (when the amount is so small they call it just bladder sweat) I tell them every drop counts. :-)


FRIDAY, JULY 06, 2007 01:17 PM, CDT

Day 37 / Day 5

Claire did great this morning. They decided to take her off ECMO; her heart is now pumping on its own. What a long morning..wait and wait and wait.

The doctors did not have to use any more medications to keep her blood pressure up, which is very good.

Now we enter another phase. We need her to pee now. That is going to be very important over the next few days. We also have to watch for infection and rejection. Still a long road but we have made a big step forward.

This will be a big weekend. Hopefully by Monday we can get her off the ventilator. That will be the next step.

Thanks again for all of your prayers and support.


SATURDAY, JULY 07, 2007 12:26 PM, CDT

Day 38 / Day 6

Claire now has a good 28hrs with her new heart. She had a great night. She is much more awake today and really does not like the breathing tube down her throat. It will remain there for a few more days. They want to continue to give the right side of her heart as much rest as possible. She has been able to maintain her blood pressure. It could be a little higher but the doctors will take it for now.

We still need her to pee. That is the next big hurdle. It could take a few days so don't be surprised.

Thanks for all the postings...they make us laugh and they make us cry. It is great to hear from everyone. I do read all of our email, but Lisa and I have not had the energy to respond to it all. I know we don't have to; I just want you to know we are getting it. We are also getting the packages and mail sent to the hospital. Thank you for everything.

Dan and Joan are going home today. We will miss them. We had such a great time with them over the past few days. They cooked us two home-cooked meals with vegetables (yum!!!!) It was great!!!

My parents are in today they are staying until tomorrow and take the kids back with them. I think Claire really liked hearing familiar voices.

Keep praying!


SUNDAY, JULY 08, 2007 02:23 PM, CDT

Day 39 / Day 7

Claire had a good night and was even able to come off the last major blood pressure medicine. Her heart has continued to get stronger, but this morning she came down with an infection. It grew out of the culture taken on Friday. Obviously, the doctors are aggressively treating it, and hopefully it will only be a minor set back. It's amazing that she has been able to go 39 days without an infection until today. On the positive side she did not get the infection until after she got off the ECMO, otherwise it would have been very dangerous.

We had a wonderful time with the kids. It was so hard to say good bye today. They wanted to stay longer. We are glad my parents came down to give us an extra day with the kids.

So many things to worry about and so many things to pray for...today and tomorrow the focus has to be on getting rid of the infection. Pee takes a back seat right now.

We continue to ride the rollercoaster...although it feels more like two roller coasters (one going up and one going down). Unfortunately, we have one foot in each rollercoaster.

We still need those small miracles every day.


MONDAY, JULY 09, 2007 12:49 PM, CDT

Day 40 / Day 8

A new week-hopefully one filled with more good news. We're off to a good start. Claire is doing well today. Her infection looks a bit better today. She has maintained her vitals throughout the night and this morning. She is still on the ventilator but they are anticipating taking her off by midweek. She wanted me (Mommy) to read her a book this morning and helped me pick out which one-Five Little Monkeys Bake a Cake! Daddy exercised her feet this morning and she moved her toes for him. She wasn't up to a lot of conversation with Daddy after exercising and fell asleep. She looks adorable today. Her coloring is a bit better.

She also has been vey good with the nurses today and listening to all of their commands. As they always say "Claire is the best"!

Still taking it one day at a time! Keep the prayers coming! Mike and I are still getting along after 40 days together. This is the most time we have ever spent together and a blessing out of all of this! He is working today- probably trying to get a break from me!

Love,

Lisa


TUESDAY, JULY 10, 2007 05:32 PM, CDT

Day 41/ Day 9

Another big day for our Clairebear! They removed the breathing tube around 12:00 today. She has been holding her own so far. She is quite uncomfortable since she has had the tube for so long. Her throat is sore and swollen. It will take her a little while to get use to breathing through her nose again and swallowing-things we all take for granted. The doctors gave us the job of encouraging her to cough which is good for the lungs. This is not the easiest task to make a 3 and 1/2 year old cough when they have major throat pain, but we will figure it out for sure!

She is coming off sedation and responding a little. She definitely lets us know when she doesn't like something-she bring her arm up as if to whack us! That's our spunky Claire.

She still is not peeing. We are praying for her kidneys wake up. They keep telling us this can take some time. It is a difficult process balancing the fluid intake and output. She needs the fluid to keep her well, but too much fluid makes her abdomen swell and makes it difficult to breathe. They are keeping a close on this.

Claire did get very excited today when Daddy talked about getting better and going home- her heart rate and blood pressure rose. We will get there, but again only on Claire's terms!

Please continue to pray for Claire to pee like Seabiscuit (the racehorse). My mom always used this analogy when we really had to go!

Love to all,

Lisa

 




 

WEDNESDAY, JULY 11, 2007 04:49 PM, CDT

Day 42 / Day 10

No big news to report today - Finally!!! It has been a quiet 24 hrs. Claire continues to get a little better every hour. She still has a long journey to get better, but she is on the right path. She still has one chest tube - hopefully that will come out tomorrow. The next big thing is to get her kidney’s working. She has had a little more pee today than yesterday.

She also needs to rest...she has a real hard time falling asleep and getting good rest. Tough when there is so much going on around you. Lisa and I are trying to both be there for her and step away so she can rest. Tough balance.

It's going to take some time before Claire regains her strength...we continue to take it one day at a time and we are very thankful for every step forward.


THURSDAY, JULY 12, 2007 10:44 AM, CDT

Day 43 / Day 11

Not sure what to say today...we got another dreaded phone call this morning at 7am. Claire's infection has not gone away and she had a difficult time fighting it last night. Her vitals got worse and so did her blood gases. She was having a harder and harder time breathing last night. They think she just started to get tired. At 6:30am they decided to put her back on the breathing tube - take control again. She is doing better right now than she was 5 hrs ago, but this is a big set back.

They will probably keep her like this for a while hoping to build back up her strength. She needs to kick this infection. One thing that helps fight the infection are kidney's that work properly. But one issue the doctors have is the antibiotics used to fight the infection make it more difficult for the kidney's to work. It's a catch 22.

Pray for the infection to go away and pray the kidneys kick back in. We need a few more small miracles!!


SUNDAY, JULY 15, 2007 02:03 PM, CDT

Day 46/ Day15

Once again Claire is showing everyone who is boss! She has had some more improvements over the night and morning. Her blood pressure has slowly been improving and they have been able to slowly wean the levels of her medications.

Her dialysis has not been pulling off as much fluid as they would like so the kidney doctors are mixing things up a little to get better results. Let's hope this works today.

Since her vitals are improving, we are hopeful that the medications are starting to kill the infection. Pray, pray, pray!

Little by little, hour by hour, day to day let's continue to pray for more improvements. What a lesson for Mom. Most of you know I don't always like to wait for things. When I decide to do something I like to just get it done. This has taught me to be patient and as they say good things come to those who wait! We will continue to wait for the grandest things for our Claire.

Thank you for the continued prayers and support. They really do lift us up!

Love,

Lisa

 


MONDAY, JULY 16, 2007 05:11 PM, CDT

Day 47 / Day 15

One last time we are going to ask for everyone's help. Little Claire has fallen into a Coma and we need her to wake up. I know we have asked for miracles before and for some reason we have continued to be granted them, but at this time we ask you to pray for the biggest possible miracle. No one understands how we got here...and we may never know....we just need Claire to wake up.

I have been reading the Bible for the past several weeks...it's the only thing that I have been able to focus on lately. So far I have only gotten through the four gospels. The one passage that hit me the most, the one that I think about everyday is Mark 5, Verse 41 when Jesus cured Jairus's daughter.

Then he took the child by the hand, and said to her, "Talitha, Cumi," which is translated "Little girl, I say to you, arise."

That is what we need...a miracle.

 


TUESDAY, JULY 17, 2007 01:53 PM, CDT

Day 48 / Day 16

Wow...it's amazing how word spreads!!

You know the crazy thing Lisa and I are sitting right next to Claire and she is still here..still breathing, her heart is still beating, she is not "officially" dead.

Since everyone has been on this journey with us you might as well know what has happened over the past 24 hrs. Our closet family is just now finding out about this latest twist..that will blow your mind.

So yesterday....

Claire's "coma" news did not get any better throughout the day and night. Her CT scan was really bad, enormous amount of swelling, her EEG was a flat line, she has no reactions to any of the neurological tests, and she is essentially brain dead. Lisa and I said our good-byes last night, we are all packed up and we even have a good friend waiting in the lobby to take us home today. We called our parents last night to tell them she is gone. The only thing we really care about is protecting our kids, Joey and Emily. We just want to tell them ourselves.

So this morning...

We had to go through the formality of doing another EEG just to confirm and the doctors could "officially" declare her brain dead. She has one drug that helped with her seizures, and acts as a sedative. That drug has to be at a low level before they can call it official. So this morning the drug is not at a low enough level and the doctors can not call it official. I know it's complicated and I can't explain it all.

So here is the twist....about an hour after her doctor leaves she starts breathing on her own....even over the ventilator!!! We are all beside ourselves. This is just not possible. Her doctor comes back and is completely perplexed. He throws his hands up and says "this is ridiculous". At this point we are all laughing, knowing this is just Claire's way. The doctors have never seen anything like this. They will be running a bunch more tests tonight and tomorrow to confirm things.

Don't get your hopes up...more than likely she has extensive brain damage and she will not make it.

So now we wait...continuing to hope for "the biggest" miracle ever. We have made tremendous friends at the hospital and they are supporting until we get home to be with our family and friends.

PLEASE DO NOT TELL OUR KIDS ANY OF THIS. LISA AND I WANT THE OPPORTUNITY TO TELL THEM OURSELVES...which I know you all will understand.

Keep praying for that miracle...we can't give up..and neither can Claire.

Oh...I need to go tell my friend that we are not leaving today!


 

WEDNESDAY, JULY 18, 2007 12:58 PM, CDT

There are no words....

Claire lost her battle last night. She fought right to the end. She was a brave little girl and an inspiration to us all.

I'm sorry you have to find out this way...there are so many people we wanted to call and tell personally, but it is just not possible.

Lisa and I made it home last night. Two of our dearest friends drove us home in the middle of the night. We will never be able to thank them enough!!!

The calling hours will be on Friday from 2-4pm and 7-9pm at the Lucey-Vanvoorhis Funeral Home in Victor, NY (301 West Main Street, Victor, NY 14564). The funeral will be Saturday, 10am at St Patrick's Church in Victor.

We want to thank everyone for all of your support. Your words, phone calls, cards and prayers helped Lisa and I stay strong throughout this unbelievable difficult time. The interfaith Chaplin at Mt Sinai said something to us in the first week that helped me get through everyday. She said "parents always ask me if little kids believe in God. she said she does not know the answer to that, but she does know that little kids believe in their parents, and that's enough for a little child." Just know that your children look up to you and you are their "God".

We want to thank all of the doctors and nurses and support staff at Mt Sinai. They fought so hard for Claire and more importantly they fell in love her and it showed. We could not have done this without them. They are very special people...we already miss all of you. It's strange not to see you this morning.

Thanks for everything...we will continue to pray, but now it for every other parent out there that has to go through this experience.

When I have more info I will post again.

We love all of you.


THURSDAY, JULY 19, 2007 10:40 AM, CDT

Update...

Lisa and I have set up a Foundation in Claire's honor called The Clairebear Foundation. The mission will be to support families with sick children...families that have the unfortunate need to go through a similar experience to ours. We could not image making it through this experience if you had to worry about how you are going to afford a hotel or dinner or a cab every day. So we are going to do everything we can to support those families in need.

In lieu of flowers please send contributions to:

The Clairebear Foundation

P.O. Box 125

Victor, NY 14564

Thanks to everyone for your continued support. Still taking it one day at a time.


It’s a lot to read…what a rollercoaster.

It's hard to believe - even now looking back it just does not seem possible.

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