Livin for Livi Quilt Cause

My friend, Shalee Hansen Peterson, is putting together a quilt raffle in an effort to help raise some funds for Alivia's transplant. Tickets will be $5 each or 5 for $20 with no limit to the number of tickets purchased. The raffle deadline is November 16.

It will be a rag quilt, probably 52x64. After the quilt is made, she will ship (United States) to the winner. The quilt should be finished by around Christmas time. Pictures of the quilt will be posted as it starts being made.

Raffle tickets can be purchased by contacting Shalee Hansen Peterson at hansshal@gmail.com or via paypal at mapshap@msn.com. Be sure to give her your name and contact info (email and/or phone number).

She wants this fun idea to go BIG so pass this invitation on to friends, family, neighbors, anyone you can think of.

Standard Journal article about Alivia

The Standard Journal in Rexburg contacted Ryan last week to see if they could do an artical about Alivia. Not sure how they heard about her, but we were happy to do the story, if nothing else to say thank you to the community for all the support that we've had so far and also to promote organ donation.  Below is a link that should take you to the story.

9 months old, fighting for her life

PICU happenings

So we've been here in the PICU since Sunday afternoon and it has been crazy.  There have been so many things going on, its hard to know where to start.
There have been multiple chest xrays, a couple blood transfusions, a PICC placed, a PICC removed, many, many labs, ultrasounds, a paracentisis, oxygen, CPAP, BiPAP, breathing tube placed, hooked up to an oscillator, an ART line placed, plasma given, new meds given, others taken away, lots of adjustments to meds and other maintenence fluids, etc, etc, etc.

But the good news is that mostly everything is improving.  Her lungs look to be clearing up.  They determined a source of infection as her PICC line which they removed.  Her oxygen levels are getting better.  She has not had a fever for over 36 hours now.  Her nutrition is lacking a bit because they had to take her off TPN for now and her kidney function is very low right now.

She is sedated and medicinally paralyzed so she is very comfortable right now.  They do let her come off her sedated stated a couple times a day to see how her body reacts.  She starts fighting the ventillator, which is good. Shows she's still got some fight in her.  She is still reactive when they check her pupils as well.

Ultimately, there are improvements. It's just gonna be a slow, but steady process.  Dr. B wants her infections cleared up and then some days after it is cleared up before she would do her liver transplant.  She is so fragile right now that not only does she need to get a little better, but she'll have to get a little stronger as well.  We are on the right road though.  We'll get there.

Later this afternoon, they will be placing another catheter because they feel with her poor kidney function, she will require dialysis.  This is not a perrmanent thing.  It is pretty common with liver failure and when they are this sick.  Once a tranplant happens, the kidneys start working properly again.  It might take a little time, but they will kick back in.

For now, it is "just keep swimming, just keep swimming."

For those of you who are interested, we will be holding a special fast for Alivia.  It will be this Thursday, October 20 or Sunday, October 23.

We're here for the long run

Well, we've now been back here for almost 2 weeks. Over the last couple weeks, Alivia's condition has been all over the place.  They finally got her to a point within the first couple of days that they felt she was doing well.  But last weekend things started to change.  She was ok through the weekend, but by Monday morning, she sounded very congested and was just uncomfortible.  Her abdomine stared to enlarge so they did a paracentisis to remove some fluid.  the rest of the week was a lot of ups and downs.  She would be good for a day and then have an aweful night or vice versa.  We did a  lot of procedures this week including ultrasounds, chest xrays, echos, more xrays and lots and lots of labs.  and she received a blood transfusion because her blood count was down. 

Friday, we had a really good day. She was happy and smiling and playing much of the day.  She did receive some packed red blood cells that afternoon and she really perked up after that. Saturday was a complete 180 though. She was back to being way uncomfortible and not being able to breath very well due to congestion. She developed a fever.  As the day went on, she seemed to get worse and worse.  It is so hard to watch her go through that.  She just was so restless and couldn't be comforted. She only catnapped so she was so exhausted.  After shift change, our new nurse decided it was time to give her a dose of oxygen to see if that helped. It seemed to for a short while, but then she started declining again.  At midnight, we took her down for another chest x ray.  After that she finally settled down enough that she was able to sleep for a longer stretch of time.  I didn't hear much out of her during the night so she must have had an ok night.

This morning, they did another chest x ray.  There was quite a noticeable difference between the one at midnight and this mornings.  Her lungs are either showing some collapse or have some fluid in them. They have not determined which it is yet.  They decided it was time to be more aggressive with this so they moved her to PICU this afternoon so that she could have one-on-one nursing attention to stay on top of her condition and also so they could treat her respiratory problems more efficiently with higher oxygen and CPAP if needed.

It has been a very emotional morning for me and very emotional weekend for Ryan.  He saw such a huge decline in her condition since last weekend. It was very hard for him. This morning was the hardest for me. I was ok until we went to church. I think the spirit just touched me and started the tears flowing and I've had a hard time getting them to stop since then.  It was after church when they decided to move her over to PICU so that was just one more blow for us.  She was really struggling to breath and was quite non-responsive to us.  That just kills me.  I have not seen a smile out of her since first thing Saturday morning and she just seems to not see us at all when we are talking to her or trying to get her attention.  It is like she doesn't recognize us. It is just breaking my heart to watch her going through this. 

I guess the bright spot in all of this is that it puts her in better position on the list and gives her more priority. Since she had a fever, we are uneligible for a liver for the next 48 hours. But once she's been without fever for 48 hours, the liver game is on.  And we're gonna win this game!

Please keep Alivia in your prayers.  This has been hard all along, but right now I think is the hardest point we've had in a long time.  I feel like our baby is fighting for he life and it is breaking my heart.  We need all the prayers we can get so that we can have our baby back.

We're back!

Life flight souvenir t-shirt.  The is the most expensive shirt Livi will EVER own.

Well, I guess I jinxed us by writing the last post saying how well Livi was doing.  Monday evening Livi developed a fever. It happened so fast. she had been fine all day Monday, but by that night, things weren't going so good.  At 630 her temperature was up to 100.0 so I called the liver doctor and told him what was going on.  As a precaution, he had us go to the hospital in rexburg and have them check her out.  By 700 when I got up there and the nurse took vitals, her temperature had reached 100.7.  They started her on IV and ran labs.  She had had labs done earlier that day that the home health nurse had run.  The results from the night time labs were noticeably worse than just a few hours earlier.  After the ER doctor consulted with the liver doctor and the local pediatrician, they decided that it would be best to just get us back down the Primary's.  They arranged for air transport for us to go down.  I ran home and got my suitcase and stuff and got back just in time to meet the ambulance that was taking us to the airport to catch the plane.  This was about midnight.  We got to SLC about 130 and were transported via ambulance to the hospital.  Luckily we were able to just go right to the room.  We got settled and by about 3 am, I was finally able to get a few hours of sleep.  Ryan drove down and got here about 530 am.

After doing a few more labs, they said that her levels were all out of whack.  This was good and bad. Good because it increased her PELD score to 39. Bad because she was a very sick little girl.  They weren't sure if there was infection or what exactly was causing the fever.  They did an ultrasound so that they could locate a pocket of fluid so they could pull some out to see if there was infection in it.  There was not.  They cultured her blood, which didn't show any signs of infection either.  They think it is just her liver that is causing the fever.  After getting her on some fluids, they have gotten the numbers headed in the right directions.  As of this morning, they said that she is in much better shape then she was yesterday.  They increased what she could take orally so that should help her keep hydrated.

pictures

Here are a few of our pictures we had taken just before this last long hospital stay.  I think they are beautiful!  I will post more pictures after I get them off my phone.

We made it home!

We were able to "check out" of Primary's on Thursday afternoon, September 29.  I didn't dare tell anyone that we were probaby going home.  Didn't want to jinx it.  I got home about 8 pm.  It was a little overwhelming at first because I had to get Alivia's meds done and it was time for the other kids to go to bed for school the next day.  But  man was it great to sleep in my own bed that night.

It is so good to be home.  We've had a very relaxing weekend.  We just stuck pretty close to home. We listened or watched several of the sessions of general conference. There were some very powerful messages given.

The kids are out for potatoe harvest for the next 2 weeks.  Hopefully, we've got a little time and can do some fun stuff while they are out.  Usually we try to take off and go camping or something fun like that, but with Livi's condition these days, we won't be going too far from home.  We're still hopeful that we'll get a liver very soon.

So far Alivia is doing really well since we got home.  She is so excited to see the kids.  They can make her smile and laugh more than anyone else.  And they just love to entertain her.  I think they really missed her while we were down at PCMC.  She took a day or so to decide she wanted to eat anything through the bottle, but I did get her to start eating orally again...as little as amount that they will allow her to eat at a time.  Right now she only can have 15 mls every 3 hours with a max of 100 mls over 24 hours.  For those who don't now, that is 1/2 oz at a time, with a max of about 3 1/2 oz every 24 hours.  That is not much, but hopefully it is enough to keep her satisfied.  she also gets to eat solids as she feels up to it.  That ought to help as well.

Friday and Saturday were busy with home health and trying to get educated on how to do her TPN and her pump feedings at night.  I picked it up pretty quickly and was able to do both on my own after just 1 day of them showing me how to change everything.  I am seriously amazed at what we can learn to do to take care of our kids at home.

I laid her on a blanket on the floor and she just rolled and rolled.  It is hard for her to do that in a hospital bed.  She was really having a good time with the freedom she had.  I think she just loves being home and getting back to a normal routine.  Hopefully we'll get to be home for a while, or atleast until they get a liver for her.