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Fb1
| | Posted on Wednesday, January 16, 2013 - 07:10 pm: | 
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It's been quite a while since Miss Olivia's last update. Great news:
quote:With Heartfelt Love
Wednesday, January 16, 2013
"Long Overdue"
Brian took a vacation day yesterday to take Livvy back down to the hospital for a typical cardiac workup with the transplant team. Everything looked great both on sight and clinically. They've started to make additional med changes, weaning her off the prednisone entirely - I am going to miss those big full chipmunk cheeks. As they've started to make changes on the steroid, we have all noticed that her ravenous appetite is becoming more and more of a typical toddler instead of a lumberjack. Brian said that she didn't shed a tear during the entire appointment which in itself is a major milestone. Maybe it was the gelato I bought her the night before. :-)
Echo function looked excellent, BP is coming down as a result of the steroid wean and now we're also starting to wean her off of BP meds entirely. Her BNP (that pesky enzyme we all have indicating heart health) is also coming down to levels like you and I would have. ECG was perfect and the staff could not be happier with the way that things are currently going. Brian and I have noticed as of late she has a TON of bruises so on my laundry list of questions that I wrote up since I wouldn't be at the appointment that was one I really wanted to know the answer to. As it turns out, it's just normal toddler stuff since it's on her shins and knees and those are indicative of how much harder the little Energizer bunny is playing these days.
Olivia has always warranted extra attention to make sure that we weren't missing any key vitals or something amiss with her old half heart. Now the girl warrants attention because she's constantly on the move more than I have ever seen her before. She takes corners in the family room running around the couch so fast that you think she will tip over and smack her head into something EEEEK! Pre-transplant stay, she could easily sit and watch an episode of SuperWhy or Mickey Mouse Clubhouse and now I can proudly say that the TV is never on for Olivia's sake. She has absolutely no interest and spends all her time playing and being an active inquisitive little busy body.
Below is Miss Liv test driving her new big bed in what is shaping up to be her new Big Girl Room. A few finishing touches and she should be in it shortly!
Woot!! 
Prayers continuing... |
Prior
| | Posted on Wednesday, January 16, 2013 - 08:08 pm: |
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And I was just getting ready to post this when the phone buzzed with your post...
I was fortunate enough to have a business trip to Rockford last week and spent Saturday evening with the family. Olivia is doing awesome- running around, playing, just being a normal kid. And she's finally getting to know who uncle Prior is!
The past few months have been nothing short of a miracle, and Olivia has many great years and memories ahead of her.
As always thanks for the prayers and just being the great folks you are!
(Message edited by Prior on January 16, 2013) |
Kenm123t
| | Posted on Wednesday, January 16, 2013 - 08:11 pm: |
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great news now you can get about spoiling her ! |
Two_seasons
| | Posted on Wednesday, January 16, 2013 - 11:09 pm: |
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My wife and I are joyous for this news.
Olivia, some day you will be all that our good Lord has made for you to be. You've got a great start! |
Panhead_dan
| | Posted on Thursday, January 17, 2013 - 01:15 am: |
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"Olivia, some day you will be all that our good Lord has made for you to be."
She already is, my friend. |
Kyrocket
| | Posted on Thursday, January 17, 2013 - 08:52 am: |
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That's wonderful, thanks for the update. |
Prior
| | Posted on Sunday, January 27, 2013 - 07:10 pm: |
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Another update from earlier this week...
First things first, medical update:
Olivia is doing so well, we have to do vitals in the am and vitals in the evening and she's not a fan but not such a fuss either now that she's gotten used to the routine. Her fourth biopsy is set for 1/31, don't know what case yet but that's now on the calendar as of yesterday. They will do bloodwork in conjunction with the biopsy to check her pro-graph/hecoria levels and make sure they're at a happy medium, confirm that the rejection is being kept to a minimum even though she's being weaned from the prednisone and watch her magnesium which has always tended to run on the low side but we are supplementing with diet and vitamin.
Olivia-isms - this is what's been coming out of her mouth lately and they are funny:
Easy killer!
Easy peasy lemon squeezy
She often likes to tell stories of how she sees an event or day planning out, something like "First Livvy bath, then, THEN Livvy dressed, and then Daddy home, kiss cheek and forehead, then PLAY" - this is how she explains to me that she took bath while I was at work, Nonna made her get dressed and then Daddy comes home to love and play with her - it's cool Mommy wasn't good enough material to be in the story 
LIVVY DO - this means back off people and let her try it herself
Help you? - she still has you/me mixed up which is one of those things I'll miss when she outgrows it
Potty training depends on the given day, it seems like she has sort of lost interest right now and we're not really pushing it. She likes to do things on her own time frame. She has however taken a shine to dressing herself in as many patterns and layers as possible...the more they don't match I'm pretty sure the happier it makes her. Below she decided she wanted to hang out on her glider, seeing no need to move Raggedy Ann & Andy she just sat right on top of them because that made more sense.
So happy she's continuing to do well! |
Fb1
| | Posted on Sunday, January 27, 2013 - 10:46 pm: |
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Excellent!!!!!
Prayers continuing... |
M1combat
| | Posted on Monday, January 28, 2013 - 03:38 pm: |
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Two_seasons
| | Posted on Monday, January 28, 2013 - 05:26 pm: |
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Blessing to all. Prayers continue for our little sweetie. God bless you for loving your daughter like you do. |
Prior
| | Posted on Monday, January 28, 2013 - 08:51 pm: |
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Steve,
Olivia is the daughter of one of my best friends. He's not a rider, but some here know him and Badwebbers are always a great group to get some prayers going for those whom need them (like my buddy Matt, Ferris's mom, and many others). That's why you guys rock.
Olivia has great parents, and she'll have a great life I know. Plus, she's got Uncle Prior to spoil her from time to time... |
U4euh
| | Posted on Wednesday, January 30, 2013 - 04:11 pm: |
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This is just an awesome feel good thread! |
Prior
| | Posted on Friday, February 01, 2013 - 08:09 pm: |
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Biopsy #4 in the Bag
Two months down, four biopsies ago, Olivia received a new lease on life with a new heart. Tomorrow is February first and the beginning of Heart Awareness Month. We won't have pathology results until then and that seems fitting too. So far results are encouraging. BNP is still falling, she's gained weight and grown even more in height - whether or not there is still some slight rejection present; it is very clear that her body is better with the new heart than it was with her original post-Fontan heart.
For any CHD parent that may be reading this - please do not interpret my statement to mean that I blame the Fontan. I don't. Like any surgical procedure, most work - some don't and the Fontan didn't work for Olivia. She was ready for it, the tests all said that she was and I still have the utmost faith in her doctors at Hope always making the right decisions for her if she were ever to be in their care again. (They don't have a transplant team so that's unlikely right now).
Unfortunately... Olivias parents shared that This biopsy didn't come back as good as the others. She's showing more rejection and they brought her back to the transplant center for a few days of observation and med adjustments. So- minor setback, but she's got some great doctors. Please contne to keep Olivia and her folks in your thoughts and prayers, as well as all other children who face these challenges. |
Fb1
| | Posted on Friday, February 01, 2013 - 08:29 pm: |
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Thx Alex.
Prayers continuing... |
Ulyranger
| | Posted on Friday, February 01, 2013 - 09:26 pm: |
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Keep up the good fight Olivia. We're pulling for you |
Two_seasons
| | Posted on Saturday, February 02, 2013 - 12:08 am: |
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Little Olivia is loved and prayed for daily. My family and others have been praying for a miracle, for a normal, healthy life for her.
We too have been challenged lately. Our 12 year old daughter's friend from school, also 12, is on life support at Childrens Hospital of Wisconsin. She contracted the flu, then got staph. Her name is Makayla if you'd like to add her to your prayer list.
God bless to all. |
Denisea
| | Posted on Saturday, February 02, 2013 - 02:52 am: |
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Praying for you Miss Olivia.
Thanks for the update Alex.
Steve, very sorry to hear about Makayla. Hoping she is surrounded by family and friends too - it makes all the difference. Will keep her in our prayers. |
Two_seasons
| | Posted on Saturday, February 02, 2013 - 08:29 am: |
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Thanks Denise for the prayers.
Thanks BadWebbers for your prayers too. |
Prior
| | Posted on Saturday, February 02, 2013 - 08:40 am: |
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We'll add Makayla to our list as well. |
Brumbear
| | Posted on Saturday, February 02, 2013 - 09:47 am: |
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Prayers will continue for all!! |
Prior
| | Posted on Monday, February 04, 2013 - 08:56 pm: |
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Miss Olivia is home and her parents just posted the following update:
Monday, February 4, 2013Heart Awareness Month
I was all about coming up with my usual facts and helpful sites regarding heart awareness month and then enter the biopsy results of Friday. So here's where it gets real and it gets in your face. Congenital Heart Defects can range from something simple as a "hole in your heart" that closes up without any medical intervention at all or they can be completely fatal upon delivery for newborn babies because their hearts are so dependent on their mother's circulatory system that life on the outside is not sustainable. Or you could be an adult walking around with a heart defect without ever knowing it until you have a major health crisis - or the unsuspecting high school athlete that passes away suddenly without ever realizing something was ever wrong.
Olivia is the in-between best and worst outcomes. Her heart defect of Hypoplastic Left Heart Syndrome is treatable - not curable but definitely can be compatible with life with the right surgeons and medication regimen. Sometimes the surgeries aren't a success, the repairs too much to overcome or the heart muscle too far gone. Enter transplant. A transplant can have its own set of complications - case in point our weekend past in the hospital treating Liv for some moderate rejection. It also comes at a high price. One life exchanged for another and all that may entail mentally later in life.
So bottom line my friends and family - if you have a well working four chambered heart; let's not abuse it. If you're overweight try to lose some weight. If you know you don't eat as well as you should and your blood pressure or cholesterol are high; try to eat better and bring those numbers into range. If you have a crappy, stressful job and know that it's taking years off your life - maybe consider changing it. Mind you the previous statements are also being written by me who just indulged in a few junky meals while Liv was hospitalized because it was easy and comfort food; I have been stressed by work more than once and I don't exercise as much as I should.
All that being said, I just spent another weekend in the hospital with a bunch of kids that had no say in the hand that they were dealt and I bet they wish for a beautiful perfect four chamber heart as well as the luxury of spending their weekends outside playing with friends and family.
Do not worry - I am not as down as my post may come across, just tired and probably more than a little cranky.
Miss Livvy was a supreme crabby patty this weekend and is now happily sitting on my lap as I type this post very much into contributing her own random keystrike here and there.
Great news, and great advice... I really need to get back on the better diet, excercise and less stress deal. Working less and managing workplace stress are my big goal for the year, which really help out the above items too. And the pup and I are doing a Wounded Warrior 5k in a few weeks.
Keep up the prayers and good thoughts! |
Kyrocket
| | Posted on Thursday, February 14, 2013 - 02:36 pm: |
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I thought about Miss Olivia today as my own kids were opening up their Valentines gifts. You know, hearts and all, all over everything. I hope she's still doing well. |
86129squids
| | Posted on Thursday, February 14, 2013 - 03:08 pm: |
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Hope all is well with Livvy! |
Ulywife
| | Posted on Thursday, February 14, 2013 - 04:36 pm: |
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Continued prayers for Olivia and Makayla. |
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