11/21/2008 - Disney Trip
The Trip went very will this year, probably the first hear she did not get sick!!! Well, she did throw up once, we are learning when she plays too hard she does seem to throw up. Anywah, she loves the Mickey Mouse Clubhouse show, and she is so cute there. Look for pictures of her from the trip
11/13/2008 - Ready for Holiday Season
Lexi is ready for the holiday season. She is watching and listening to all of Luke’s favorite christmas shows and music.
She is finally off of antibiotic she has been on since spring, to prevent kidney infection from returning
Annual trip to Disney is next week, will be posting pictures soon after - she should be tall enough for ‘Sorin’
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
09/13/2008 - Lexi is Almost 4!!!
It is been a long while since we have updated Lexi's site, things are going well
Lexi had one other illness that put her in the hospital for a few days in May, nothing too big
She is back in preschool now, and doing very well, she may even catch up to her peers!!!!
Lexi is also going to dance class once a week, she really loves it. As she would say: "Lexi Loves Dance"
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
Lexi had her annual (bi-annual so far) heart Cath in April...all looks ok, no concerns
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
04/01/08 - Doing well
Back to just 2 meds - Cyclosporine and an anti-seizure med
Lexi is back at school, working to catch up to her peers
03/11/08 - About back to normal
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
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).
Next week or so Lexi will have another EEG to test out her brain and any seizure activity, we expect no seizure activity there
She was taken off of Lasix today and after showing good blood pressures, her enalapril dose has been cut in half
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.
03/06/08 - All is well so far
The Heart work up went well, only issue is high blood pressure, hopefully that will go away with all her current meds
She is still getting her personality back, the methadone is being weaned
03/03/07 - 12noon - Lexi is home!
Acting fairly normal
Lots of meds - anitbiotic, lasix, methadone, enalapril, and her cyclosporine (anti rejection med)
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
03/02/08 - 9p Lexi will be discharged early Monday morning, unless something goes wrong
She is almost her old self now
Blood pressure is a bit high, they want to watch her one more night just to make sure it does not cause problems
03/02/08 - 11a Lexi seems to be back to her old self
Seems she is out of her narcotic funk
She is back to singing and dancing, and is running the halls of the hospital
Still one iv port connected, but it has only been used for blood draws, no meds there
Her blood pressure is a bit high, think they will be keeping her on enalapril for a while
Schedule for her last(?) dose of methadone this morning
We think she will be discharge this afternoon
will post here later if she makes it home today!!
03/01/08 - 7a - Tranfered to the stopdown unit last night
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
Was still on oxygen overnight, probably not really needed
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
02/29/08 - She is awake and alert
The sedatives were turned off over night
She is awake and alert and watching Playhouse Disney
She seems groggy (sp?)
Lexi is communicating, very little, she just looks so comphy, and has a bit of a concerned look on her face.
02/28/08 - 6:20pm
Vent was pulled about 4:30p - so far so good (CLICK HERE FOR PICTURE)
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
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
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
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
02/27/08 - Still waiting, Lexi is getting better, it is a slow process
The plan this afternoon was to extibate her (remove breathing 'tube')
To do so, they cut off her Fentanyl and Versed, to help bring her out of the slumber they have put her in
Lowered the vent so she takes more breaths on her own, sort of a test to see if she could tolerate no vent
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'
They stopped the tube feeding
Later, they abandoned the plan
Blood gases were not quite right
when suctioning she sat'ed low (I would too, that does not look all the fun).
Plan is to try this again Thursday (hope they turned the food tube back on, don't want her to be hungry!!!).
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)
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.
We don't have details on the infections, but basically she has Pneumonia, the Kidney and UT are infected and being treated.
02/26/08 - Just a waiting game at this point
This is a long process because Lexi is Immunosuppressed. The Immunosuppression contributed to the infections and now play a role in slowing the recovery
Lexi's lungs look a bit worse, there is some fluid build up in the right
Breathing tube is staying put for now
Viral cultures should be back and we find out soon what treatable viruses she has
They have changed antibiotics for her UIT (and Kidney? - will need to check on that)
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
An EEG was performed Tuesday after noon...that should indicate what sort of seizure activity she is having...hopefully none
Neroulogy is thinking that she should be put on some sort of anti seizure med to prevent a similar even in the future
02/25/08 - Problems indicated? (5am update, will update later in day)
It appears that Lexi may have several infections...starting with Kidney, uniary track and Pneumonia
As we understand it the Pneumonia could have kicked in very quickly and kicked off the events that started Sunday morning
More tests and results coming throughout the day
Lexi still heavily sedated
11:00 am
XRays show pulmonary edema, not necessarily pneumonia - that is good (more to come)
They are telling us that it looks like Kidney infection is the primary problem
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
Kidney function is a bit low - they are generally compromised because of her Cyclosporine - probably worse now
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!!!
Looks like she will be in the PICU for a week or so...the thought is she has these infections that need cured.
10:00 pm - things are looking up
They (the professionals) have pretty much determined that a UTI grew in to an infection in the Kidney causing the problems
ECHO performed on heart - it is once again acting normal, Lexi has been completely cleared, no rejection issues at all
They are keeping her sedated for now.
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
No signs of any more seizers
They are awaiting results of cultures to determine what Bacteria they need to treat
02/24/08 - Lexi was rushed to hospital today
Early in the AM she had a seizure that would would not end, first seizure in years and we have seen nothing like this
911 called when she started the seizure, ambulance Lexi taken to closest hospital, to get her stabilized
Once stable and sedated, Lexi air lifted by airlife to Children's
Seizure lasted at least 45 min
Initial fear - acute rejection, Lexi has had flu like illnesses most all winter, another cause indicated could have been Febrile Seizure
Preliminary results of Initial tests indicate heart functioning different then ECHO in Dec
Lexi remained heavily sedated, steps taken to off set rejection
Several med started; some for anti-rejection, blood pressure, antibiotics
Central line and Arterial line added
Later (final?) ECHO results indicate heart is functioning properly; there is no sign of rejection, ECHO will be performed Monday
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
01/12/08 - She is becoming quite the little girl
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
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!
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