Lexi's Heart

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Lexi is our Daughter born 09/24/04 with Hypoplastic Left Heart Syndrome & is now growing up with her heart transplant.  This web site has been assembled to keep everybody updated with her story and pictures.

FINALLY!!!!   NEW UPDATE 09/13/08 @2:00 pm MDT

If you would like to send comments, prayers or would like more information email us at: Lexi@LexisHeart.com

Thanks for stopping by!!

 

Latest Pics Here! (05/08   07/8  08/08)

To donate blood for babies that had Lexi's problem or any of the sick children at The Childrens Hospital The Children's Hospital Blood Donor Center at 720-777-1234 - a lot of kids need your help

Latest Updates:

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09/13/08 - Lexi is almost 4!!!!
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It is been a long while since we have updated Lexi's site, things are going well

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Lexi had one other illness that put her in the hospital for a few days in May, nothing too big

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She is back in preschool now, and doing very well, she may even catch up to her peers!!!!

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Lexi is also going to dance class once a week, she really loves it.  As she would say: "Lexi Loves Dance"

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To follow up from previous posts, she is still on an anti-seizure med, and has no seizures since February and an EEG back in lat March showed no seizure activity

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Lexi had her annual (bi-annual so far) heart Cath in April...all looks ok, no concerns

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During the summer Lexi was fitted with eye glasses, she has a bit of an astigmatism and the concern was that it could be affecting her vision some.  Her eyes still don't always track together...but they are much much better then a year or so ago

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04/01/08 - Doing well
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Back to just 2 meds - Cyclosporine and an anti-seizure med

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Lexi is back at school, working to catch up to her peers

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03/11/08 - About back to normal
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Life is about back to 'normal' for Lexi and her family, with a few more meds (antibiotics and anti-seizure) and some follow up doctor appointments

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The pros want to do some more testing as she continues to heal, today she had an ultrasound of her Kidney (we have not gotten results yet, which we assume is good news).

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Next week or so Lexi will have another EEG to test out her brain and any seizure activity, we expect no seizure activity there

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She was taken off of Lasix today and after showing good blood pressures, her enalapril dose has been cut in half

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She is on a different antibiotic for a week or so, it seems they want to make sure that all her infections are killed!   Besides, what she was on caused her a lot of stomach problems...she is easier to get along with now.

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03/06/08 - All is well so far
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The Heart work up went well, only issue is high blood pressure, hopefully that will go away with all her current meds

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She is still getting her personality back, the methadone is being weaned

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03/03/07 - 12noon - Lexi is home!
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Acting fairly normal

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Lots of meds - anitbiotic, lasix, methadone, enalapril, and her cyclosporine (anti rejection med)

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Will go back in Tuesday for a full heart work up to make sure that it is still working and responding as as it should - that rejection did not set in as a response to everything she has been through

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03/02/08 - 9p Lexi will be discharged early Monday morning, unless something goes wrong
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She is almost her old self now

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Blood pressure is a bit high, they want to watch her one more night just to make sure it does not cause problems

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03/02/08 - 11a Lexi seems to be back to her old self
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Seems she is out of her narcotic funk

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She is back to singing and dancing, and is running the halls of the hospital

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Still one iv port connected, but it has only been used for blood draws, no meds there

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Her blood pressure is a bit high, think they will be keeping her on enalapril for a while

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Schedule for her last(?) dose of methadone this morning

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We think she will be discharge this afternoon

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will post here later if she makes it home today!!

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03/01/08 - 7a  - Tranfered to the stopdown unit last night
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Lexi is off all IV meds - on an anti seizure med and a med to offset widthdrawal (Methadone).  She was on very heavy doses of meds to keep her sedated

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Was still on oxygen overnight, probably not really needed

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She does not seem herself, but she has been through a lot, she is just laying there not talking much, hope she is just beat and will come out of the funk, perhaps once all the drug effects wear off

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02/29/08 - She is awake and alert
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The sedatives were turned off over night

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She is awake and alert and watching Playhouse Disney

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She seems groggy (sp?)

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Lexi is communicating, very little, she just looks so comphy, and has a bit of a concerned look on her face.

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02/28/08 - 6:20pm
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Vent was pulled about 4:30p - so far so good (CLICK HERE FOR PICTURE)

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She had been a bit fluid overloaded (in particular this morning), after a few doses of Lasix the pulmonary edema (and what as thought to become pneumonia ) is gone

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Lexi is still sedated some, not nearly as much, they are cutting back a bit more, seems she should be alert by morning...best guess

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Once alert we may be able to tell how well her brain works, she was awake when the vent came out she seemed normal, but we really could not tell

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Earlier she tried to get her pul/sox thing off, she reached a couple of times and give up - seemed that took a lot of energy

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02/27/08 - Still waiting, Lexi is getting better, it is a slow process
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The plan this afternoon was to extibate her (remove breathing 'tube')
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To do so, they cut off her Fentanyl and Versed, to help bring her out of the slumber they have put her in

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Lowered the vent so she takes more breaths on her own, sort of a test to see if she could tolerate no vent

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She is on some 'new' narc to keep her sedated and calm, don't know the name but it seems to do what they want, she is still 'sleeping'

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They stopped the tube feeding

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Later, they abandoned the plan
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Blood gases were not quite right

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when suctioning she sat'ed low (I would too, that does not look all the fun).

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Plan is to try this again Thursday (hope they turned the food tube back on, don't want her to be hungry!!!).

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Once Extibated, they will slowly start pulling all the connections (IV stuff).  Hope they get her left hand freed up quickly - how can she play with her iPod with no free hand? (she is left handed)

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Neurology stopped by to talk about the EEG results.  They reported that the EEG could be a bit off because of the Versed, but showed no signs of continued seizures - SUPER!   They recommend (and had started) a anti-seizure medicine, something they would like her to take when she gets out.  Having had seizures in the past, apparently she is more likely then to have them...makes sense.

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We don't have details on the infections, but basically she has Pneumonia, the Kidney and UT are infected and being treated.

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02/26/08 - Just a waiting game at this point
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This is a long process because Lexi is Immunosuppressed.  The Immunosuppression contributed to the infections and now play a role in slowing the recovery

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Lexi's lungs look a bit worse, there is some fluid build up in the right

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Breathing tube is staying put for now

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Viral cultures should be back and we find out soon what treatable viruses she has

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They have changed antibiotics for her UIT (and Kidney? - will need to check on that)

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They are keeping her sedated to help her heal (and to keep her from pulling any if the IVs, central or the A-line - problem they are having is that she requires  lot of drugs for sedation, she wakes up a lot and they 'bolus' her with one of the narcotics

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An EEG was performed Tuesday after noon...that should indicate what sort of seizure activity she is having...hopefully none

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Neroulogy is thinking that she should be put on some sort of anti seizure med to prevent a similar even in the future

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02/25/08 - Problems indicated? (5am update, will update later in day)
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It appears that Lexi may have several infections...starting with Kidney, uniary track and Pneumonia

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As we understand it the Pneumonia could have kicked in very quickly and kicked off the events that started Sunday morning

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More tests and results coming throughout the day

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Lexi still heavily sedated

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11:00 am
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XRays show pulmonary edema, not necessarily pneumonia - that is good (more to come)

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They are telling us that it looks like Kidney infection is the primary problem

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Initial results in Urine Analysis indicates some sort of infection (they are doing further studies to see exactly what), and this infection grew up into her Kidneys

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Kidney function is a bit low - they are generally compromised because of her Cyclosporine - probably worse now

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She is still sedated and will be for quite some time, they say she is 'not narcotic naive' and have to get her more - they added some new sedative (some new thing I don't remember the name), she kept waking up!!!

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Looks like she will be in the PICU for a week or so...the thought is she has these infections that need cured.

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10:00 pm - things are looking up
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They (the professionals) have pretty much determined that a UTI grew in to an infection in the Kidney causing the problems

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ECHO performed on heart - it is once again acting normal, Lexi has been completely cleared, no rejection issues at all

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They are keeping her sedated for now.

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Her breathing tube will be removed Tuesday morning, she will be monitored to make sure she can breath on her own, she still is so sedated they fear she may need to be kept on the vent

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No signs of any more seizers

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They are awaiting results of cultures to determine what Bacteria they need to treat

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02/24/08 - Lexi was rushed to hospital today
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Early in the AM she had a seizure that would would not end, first seizure in years and we have seen nothing like this

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911 called when she started the seizure, ambulance Lexi taken to closest hospital, to get her stabilized

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Once stable and sedated, Lexi air lifted by airlife to Children's

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Seizure lasted at least 45 min

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Initial fear - acute rejection, Lexi has had flu like illnesses most all winter, another cause indicated could have been Febrile Seizure

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Preliminary results of Initial tests indicate heart functioning different then ECHO in Dec

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Lexi remained heavily sedated, steps taken to off set rejection
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Several med started; some for anti-rejection, blood pressure, antibiotics

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Central line and Arterial line added

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Later (final?) ECHO results indicate heart is functioning properly; there is no sign of rejection, ECHO will be performed Monday

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Lexi appears to have some infections, we are told that perhaps because of her history of seizures that infections could cause them, cultures taken to see what if any infections exist

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01/12/08 - She is becoming quite the little girl
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No health issues, was really sick early December, we had a work up done on her heart, and all is well; just a virus that hit her very hard

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Dance is going well, Lexi had a recital just before the holidays, she did well - but, she is only 3, she got out on the stage!

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Lexi started pre-school in late November, she is starting to enjoy it, there is a lot more structure there then at home, quite an adjustment for her

Past Updates: 

All updates, click here

Lexi's History (how we got to this point):

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02/05/04 - IVF transfer of 6 MD free embryo's

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02/21/04 - Blood tests indicate pregnancy

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03/08/04 - Ultrasound indicates 1 fetus

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05/21/04 - Ultrasound indicate heart defect: Hypoplastic Left Heart Syndrome
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Indicates left side of heart is undeveloped

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No problems with pregnancy, it continues as normal, problems occur after birth

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Until recently this was 100% fatal

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Options presented
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Comfort care

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3-Stage Open Heart Surgery, starting first week of life

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Heart Transplant soon after birth

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07/15/04 - Echo's re-confirm HLHS

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07/16/04 - We are focusing on transplant option at Children's in Denver
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We will be meeting with Transplant Coordinator around Sept 1

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Children's does more baby heart transplants then any other hospital in the country, that is good news to us.

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09/08/04 - Met with Denver Children's Transplant Coordinator
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Another echo done - everything looks the same for the most part

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Met Dr B, discuss options & concerns

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Worked with coordinator to understand what occurs from now through the transplant.

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Started paper work to get Lexi on the trans plant list at 36 weeks
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(33 week preggo at the moment)

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If heart becomes available before 38th week, emergency C-Section will take place

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We are all up beat and just awaiting the arrival of Lexi

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09/22/04 - Lexi's Mom admitted to hosp, diagnoses - Pre-Eclampsia, HELLP Syndrome, Toxemia
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Lexi added to Heart Transplant list

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Leah very sick

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09/24/04 - Lexi Born at Pres/StLuke in Denver - 4lb 5 oz, 17 1/2 inches
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Ultra Sound confirms HLHS

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Lexi breathing on own

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Med being administered to keep PDA open, causing apnea

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Pics:   http://www.tome.net/sites/tome/home/pics/2004/0904/lexi's_first_day.htm

Web Sites With Information about HLHS:

Hypoplastic Left Heart Syndrome - what is it - SUPER image of problem (New 10/22/04)

The Children's Heart Institute, Congenital Heart Defects

Little Hearts Matter

VIDEO TESTING

First Video of Lexi > 200k (broadband)

First Video of Lexi 28K dialup

Lexi at Transplant Clinic 3/24 > 200k (broadband)

Lexi at Transplant Clinic 3/24 28k dialup