12/29/04 - Getting better, little by little

	Lexi is up to 12 ml/hr feeds They increased calories by 2 per ml The plan is to maintain this volume and increase the calorie level, so we know that the volume is not too much We got the ok to try some bottle feeds, tried once, but she is not 'hungry' since she is getting continuous feeds, will try more Thursday
	She is so alert these days, gotta get some picture updates
	No longer on dopamine.
	She is a few grams under 6lb now The bigger she gets, the more hearts that should become available to her Well...if any ever do become available, the waiting list continues to grow for these babies
	The plan is to lower her  Milrinone as low as they can, start some Captopril get all the fine tuning done until she is stable and growing, then send her to the step down unit to wait for the precious heart

12/27/04 - Lexi is doing a bit better

	She is tolerating feeds of 10ml/hr Goal is about 14/hr They will start to add extra calories Tuesday (adding formula mixture)
	They reduced her dopamine dose slightly
	Lexi has been moved to a private room in the CICU, that is very nice for us and her

12/25/04 - Getting more cute, not much healthier

	They started her feeds again, first at 2ml/hr now up to 4ml/hr That is not allot - but it is better then nothing (and they will continue to increase) The goal of the professionals would be about 16 ml/hr, we figure from what we have seen over the past month, she has troubles over 14 ml/hr
	She is pretty much over the  Acidosis, at least this time it occurred at the hospital, not under our home care
	She has lost a few grams of weight (1-2 oz?), but not much, which is not bad for being on TPN and lipids exclusively for a few days
	She has received 3 transfusions over the past week, her color is a nice a pink now Thank you to all who are giving blood - each donation saves at least 1 life!!! Thank you to EB for the direct "donated" blood for Lexi

12/23/04 - Struggling, not getting better, but not getting worse

	Had Echo to determine if her heart is squeezing any better, it is not
	She up to a 'full' dose of Milrinone - not sure what that means, but they don't seem to want to increase it
	Lexi is a bit Acidoic again, she is getting Bicarb to help off set it
	Still not feeding, though she is on a TPN and lipids now...but those do not help her to grow very much
	Speaking of growth she is about 5lb 12oz - been at that weight for 3 or 4 days now

12/21/04 - Struggling a bit, but still waiting...

	It is becoming more apparent that Lexi will not be leaveing the hospital again without out a new heart
	"Snow Pile" at TCH yesterday, inpatient kids at the hospital got to pick out donated Christmas gifts, Lexi's nurse picked out a musical Pooh One personal note I would like to add - the folks at TCH and the community in general have been so good this holiday season Seems every other day there is another group there doing good things for the kids to help make their holidays special, I would like to say a heart felt THANK YOU!!! to all the volunteers and special people that give their time to these kids There are so many very sick kids here, and so many families struggling to make ends meet, anything any body can do for these families is so appreciated, I doubt anyone realizes how much None of these kids deserve to be here and any help anyone can give to them and their families is so much appreciated, especially the kids and families from out of town Check out Ronald McDonald House's How Can I help Do a blood donation at The Children's Hospital Check out How to Help Kids at TCH Sign up for Rainbow Rewards, a painless way to give
	When weaning the Milrinone  and trying to go with captopril her feedings did not go well She spit up, and aspirated The thought is that the Captopril, although a nice drug, is not helping her heart to push the blood like the Milrinone does Milrinone is an IV drug, cannot be given orally...as long as she is on that she cannot go home When on the Captopril the lack of blood to her gut could be causing the spit up causing small set backs (makes sense to us from last home stay) Echo on Sunday showed that the ventricle was not pushing well - but the Milrinone helps that, the dose was increased Tuesday The plan was to wean from Milrinone and go to oral Captopril, and I think they may try again once she shows she is strong enough.  When on Captopril she can go home, as long as there are no other issues
	Lexi will have Echo Wed, so we will see if her one ventricle is working better
	Feeds were stopped until the professionals determine that the ventricle is pushing blood adequately
	All other organs and body systems seem to be functioning properly and doing their job adequately
	'Crit' was low Tuesday, thus blood transfusion was performed Tuesday evening, she should be feeling real good and be nice and pink Wed

12/19/04 - Just laying around waiting for a heart

	Lexi seems to be doing pretty well, her current problems are a bit limited in number
	She smiles now, showing quite the personality
	Had Echo Sunday - problem indicated, Ventricle not performing well Her right ventricle (her only ventricle) is not pushing very well, it should be better The captopril is not cutting it, so the Milrinone will be kept running and dose will be upped. As long as she is on Milrinone she is not going anywhere
	The docs want to keep the Milrinone running a few more days due to problem found on echo
	Continuous feeds were going well, with little reported problem, upped the caloric counts in the formula Do not want too much volume Bottle feeding to start soon?
	Does not look like Lexi will make it home for Christmas as we had hoped, but she may

12/17/04 - Getting bigger and better

	Lexi is up to 5 lb 12 oz - she was admitted this time under 5 lbs She seems to be packing on the weight quickly now Making up for lost time?
	She is about recovered from the collapsed lung - they will be weaning her oxygen support over the next couple days
	She is on full continuous feeds, taking captopril via the feeding, they will be introducing other meds via feeding over the next few days We don't know a whole lot about this med, other then it helps with her circulation, and it seems like she will be on it until she gets her heart She is currently taking Milrinone via IV - that will end soon We think it is keep her on both, in case feeding goes bad or IV gets pulled (which it should be soon)
	We have moved most of our daily lives to an apartment a couple blocks from hospital We are quite close now, no more 2 times+ daily 1-1.5hr one way commute Luke is with us more this way - he has suffered a bit through all of this, not knowing when we would be around or where he maybe going after school.  His weekends seem to have been spent in the back seat of the car

12/15/04 - Lexi is getting better - lots to update, it has been a few days

	Recovered from the Acidosis
	Nearly recovered from collapsed lung
	Had EEG and CT to check for seizure and/or activity Both came back with no changes from previous tests No current seizure activity - she previously showed sub-clinical activity No new strokes
	On continuous feeds of about 14 ml/hr - more then she has ever gotten Tolerating it well No spit up ... so far
	They believe she may have had seizure Sunday and/or Monday - upped her dose of Phenobarbital, then gave her an extra dose She has been in a Phenobarbital haze the last couple of days Seems to be about out of that haze this evening - more alert then the past few days
	Ophthalmologist looked at her eyes today - she is not acting quite right - sight wise Docs had feared some sort of optic nerve damage - none found Could not adequately test her actual vision - will do so at 6 months See is able to see something, we can tell, but her eyes may still be a bit goofed from the Phenobarbital
	Femoral line to be removed this evening...we believe.  Then only 1 iv left with her main meds running The plan is to introduce the meds via mouth 1 at a time to see if they may have caused the spit up If no spit ups on full feeds and meds then life will be good

12/11/04 - Lexi is doing very well - recovering from Acidosis

	The Acidosis was probably caused by her lack of kidney function and the dehydration - the two do not get along well together as is painfully obvious to us now
	She has been nicely re-hydrated...the doctors had planned to not use IV's to re-hydrate, but Lexi presented them no other option Friday night
	In general, with Lexi's heart condition, the professionals want to keep her on the slightly dehydrated side.   If she is over hydrated her vascular system will get too wet and her little half heart will work harder then it needs to....so hydration is a delicate balance for Lexi
	When Lexi went home, everyone was aware that her kidneys were not 100% and that she was a bit more dehydrated then desired, but we all (parents and care team) believed that proper hydration could be accomplished with her regular feedings She did not feed real well Her Kidneys were not working right, she urinated too much
	Once Lexi gets her new heart...the professionals assure us that most, if not all of these problems will go away...seems that the heart cannot come too soon

12/10/04 - Lexi is back in the hospital

	She is still a bit dehydrated and has been a bit more irritated then normal, so we thought we would have her looked at
	Became very irritated during checkup
	Her blood levels and hydration indicate that her kidneys are still struggling to do their job (spitting up her feeds have not helped with hydration)
	Decision was to admit her and try to get all her blood levels and hydration levels to where everyone believes they should be for Lexi
	She should only be in hospital for a few days - nothing like a month ago

12/08/04 - Everything going smoothly at home

	Lexi and family seem to be adjusting, Wed was first real quite 'regular' day
	Lexi appeared on 9new's  Colorado & Company to promote blood and organ donor awareness
	There are concerns about her getting enough fluids & nutrition Lexi does not seem to want to eat allot When she does eat well, she seems to spit up very well We are logging every single ML of intake (seems to be slightly behind daily recommended numbers) Hope that Thursday's weight in at Transplant Clinic goes well, that she gains 50 grams or so, then perhaps the concern will go away...hopefully.

12/06/04 - Lexi is home!!!  Still awaiting a heart though, more updates tomorrow

12/05/04 - Coming home Monday

	All is good at this point, no new problems to report
	Feeds are going better
	Blood drive on Dec 11, location in Castle Rock finalized

12/03/04 - Doing even better - nothing should get in the way of Monday home!!

She is resting and and recovering from her 9news gig

Only support she has now is the NG Tube to help get food in her She has had some spit up problems the last couple days Volume? Fortifier? Gut just not completely ready? We took the tube out, the thought is she may have too much refux, we will be trying different fortifiers, volumes and methods This should not prevent her from coming home, once we all figure it out (the tube is probably back in by time this was written)

12/01/04 - Doing real well, plan is to come home Monday!!!

	9News met Lexi today: Story from the 10p news cast
	She is gaining weight, slowly, but gaining She actually got below her birth weight at one point She is above birth weight now, and steadily gaining
	All of her labs seem to be back to normal ranges now, or real close if not
	Off all IV's - no PICC, no nothing
	EEG on Monday came back the same, sub-clinical seizures, so she will stay on  Phenobarbital for now, it is a small dose
	Her sore bottom is recovering nicely (nice that such small things are all we have to report on)
	Her A-Line sores are about all recovered
	She is looking so normal now...if we can just get her to take all of her feeds by bottle