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.
Wednesday, October 26, 2011
Tuesday, October 25, 2011
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
9 months old, fighting for her life
Tuesday, October 18, 2011
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.
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."
Sunday, October 16, 2011
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.
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.
Wednesday, October 5, 2011
We're back!
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| Life flight souvenir t-shirt. The is the most expensive shirt Livi will EVER own. |
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.
Monday, October 3, 2011
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.
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.
Sunday, September 25, 2011
Our latest staycation - week 3
This past week has been a lot different than the first couple of weeks we were down here. I think we've finally found a good balance for now. Monday, they added a new diuretic to her regimine. I think it is working. She has started getting rid of fluid on her own with this diuretic. Man does it make a difference in how she feels and acts when she is more comfortable. She has been full of smile and very chatty this past week. It has really been great to finally have some positive results from our stay down here. They have tweeked little stuff through the week, but they didnt do much because we don't want to rock the boat.
Her labs on Thursday did get us a few more PELD points so she is now up to 35. They also broadened tha age range of donor that she is able to accept. With these 2 things we are really hopeful that we will get a liver soon. All the doctors and nurses and of course I have been very pleased with how well she was doing this week. I even heard mention of possibly being able to go home this coming week. Last week, it was just the opposite. We were just resigned to being here until transplant happens so it is good to hear that they are reconsidering.
Her labs on Thursday did get us a few more PELD points so she is now up to 35. They also broadened tha age range of donor that she is able to accept. With these 2 things we are really hopeful that we will get a liver soon. All the doctors and nurses and of course I have been very pleased with how well she was doing this week. I even heard mention of possibly being able to go home this coming week. Last week, it was just the opposite. We were just resigned to being here until transplant happens so it is good to hear that they are reconsidering.
Our latest staycation - week 1 & 2
We are back down at PCMC again. So far this has been our longest stay and there is a possibility that we will remain here until we get a liver transplant.
The kids started school on the 6th, and then I got word from the Liver Clinic coordinator that they felt that I needed to bring Alivia down. She just was struggling with eating enough and her abdomin was growing quite quickly. I was sad to have to leave the kids on their 1st day of school, but we do what we gotta do.
Wednesday, they did a paracenticis to remove some fluid from her abdomin. They removed about 320 mls. She did pretty good for a couple of days, but then it started coming back on. They also decided that she just needed some additional help nutritionally so they placed a PICC line on Wednesday as well. They then put her on TPN, an IV nutrient. Since she had a paracenticis, they put her on a couple of antibiotics just in case there was any infection in the fluid. The cultures came back negative so they took her off the one antibiotic after a couple of days. That night she ended up getting a fever so there was something else going on. They put her back on that antibiotic and the fever went a way. Turns out there was infection in the PICC, which as long as she was on the antibiotic she was fine because it was treating the PICC line. On Tuesday, the pulled the PICC because there was a possible backup offer and they didn't want the infected PICC in place just in case the offer went through. It did not though.
During this time, we were on several different combination of fluid to try to find a good balance to try to keep the fluid off. It just was not working so they decided to do another paracenticis Tuesday evening. They did it right in the room and I was able to stay and watch. it was quite interesting. They drew almost 500 mls of fluid off this time. Unfortunately, it only lasted about a day before it started filling up again.
She had another fever again after they took her off the antibiotic again so they had to put her back on it. Saturday, the did one more paracenticis. I got to participate in this one. I was in charge of administering the sweeties (sugar water) during the procedure. Every time she started fussing, I got to squirt some in her mouth. It wasn't a big job, but hey, I got to participate.
My husband and kids were able to come down and visit over the weekend. Alivia was so happy to get to see them. I was too. It has been hard being away from them for so long.
The kids started school on the 6th, and then I got word from the Liver Clinic coordinator that they felt that I needed to bring Alivia down. She just was struggling with eating enough and her abdomin was growing quite quickly. I was sad to have to leave the kids on their 1st day of school, but we do what we gotta do.
Wednesday, they did a paracenticis to remove some fluid from her abdomin. They removed about 320 mls. She did pretty good for a couple of days, but then it started coming back on. They also decided that she just needed some additional help nutritionally so they placed a PICC line on Wednesday as well. They then put her on TPN, an IV nutrient. Since she had a paracenticis, they put her on a couple of antibiotics just in case there was any infection in the fluid. The cultures came back negative so they took her off the one antibiotic after a couple of days. That night she ended up getting a fever so there was something else going on. They put her back on that antibiotic and the fever went a way. Turns out there was infection in the PICC, which as long as she was on the antibiotic she was fine because it was treating the PICC line. On Tuesday, the pulled the PICC because there was a possible backup offer and they didn't want the infected PICC in place just in case the offer went through. It did not though.
During this time, we were on several different combination of fluid to try to find a good balance to try to keep the fluid off. It just was not working so they decided to do another paracenticis Tuesday evening. They did it right in the room and I was able to stay and watch. it was quite interesting. They drew almost 500 mls of fluid off this time. Unfortunately, it only lasted about a day before it started filling up again.
She had another fever again after they took her off the antibiotic again so they had to put her back on it. Saturday, the did one more paracenticis. I got to participate in this one. I was in charge of administering the sweeties (sugar water) during the procedure. Every time she started fussing, I got to squirt some in her mouth. It wasn't a big job, but hey, I got to participate.
My husband and kids were able to come down and visit over the weekend. Alivia was so happy to get to see them. I was too. It has been hard being away from them for so long.
Tuesday, August 23, 2011
pictures
I decided there is just a whole lot of writing on this blog and not near enough pictures. I'll try to do better about adding pictures as well as writing. Here are a few from the recent past. Sorry about the picture quality, they are cell phone pictures.
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| with an ng tube at one of our stays in July. we were able to remove it before heading home because she was eating well. |
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| this was while waiting to see if Livi would be getting the liver |
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| she had a big smile about something |
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| Alivia's BYL (Bless Your Liver) onsie that we made |
Sunday, August 21, 2011
Dry run
So Friday night, we went to bed at about 11:30. At 12:30, my cell phone rang and it was the liver transplant coordinator. She said that they had a liver and wanted us to head to PCMC right away. She said that we were a backup recipient to a baby that was having some issues and might not be able to receive the transplant.
Talk about adrenaline kicking in. I needed a shower so I jumped in really quick and Ryan got the other kids up and ran them to his parents house. Then we threw our bags together and loaded the car and in less than an hour we were on the road. Can't say I've ever driven to SLC in the middle of the night before. They wanted us there as close to 5 am as we could. It was 5:10 when we pulled into the parking garage. We got admitted and went up to our room.
Right away, they started taking vitals and placed an IV for fluids and started drawing large amounts of blood for labs. Then it was just a waiting game. We were all exhausted so between people coming into the room, we tried to sneak in some naps. Poor Alivia had been without food since 130 am, the last bottle we gave her just as we were leaving. She could not have anything to eat at all.
We waited and waited and waited some more. It took until about noon before we heard that it was very likely the other baby would be getting the liver. The nurse told us that he has been really sick for a long time and that he has missed out 2 or 3 times because he's been too sick for surgery. They still weren't absolutely sure that it was going to work out so we just had to keep waiting. About 330, they said he was going to receive the liver, but wanted us to stick around until they got his liver out and were ready to put the new one in. So we waited some more. About 6 pm, we got another update that they were running behind a bit and it could be a couple more hours. At about 7, we were just getting back from eating dinner, when our nurse caught us in the hall and told us that they were discharging us. At that point, I just broke down and cried. I'm still trying to figure out why. I don't know if it was relief, disappointment, discouragement, or just a release of all the anticipation. Maybe a combination of everything, I don't know.
So we got our stuff put together and finally got to make a bottle for Livi. She scarfed it down. And we were on our way home by 815. It was almost 1230 when we got home. What a crazy 24 hours it was! It was such a roller coaster of a day.
I'm so glad the tranplant worked out for the other baby. Sounds like he needed it much more than Livi does right now. I hope that all continued to go well after we left and that he will recover well and go on to live a full life. May God bless and watch out for him and his family and also the donor family. What a blessing!
Next time, hopefully we will be the recipient instead of a backup. But I guess we learned a few things with this dry run. There are some things that we can do to be better prepared when we get that call again.
So for now we are back to the waiting game.
Talk about adrenaline kicking in. I needed a shower so I jumped in really quick and Ryan got the other kids up and ran them to his parents house. Then we threw our bags together and loaded the car and in less than an hour we were on the road. Can't say I've ever driven to SLC in the middle of the night before. They wanted us there as close to 5 am as we could. It was 5:10 when we pulled into the parking garage. We got admitted and went up to our room.
Right away, they started taking vitals and placed an IV for fluids and started drawing large amounts of blood for labs. Then it was just a waiting game. We were all exhausted so between people coming into the room, we tried to sneak in some naps. Poor Alivia had been without food since 130 am, the last bottle we gave her just as we were leaving. She could not have anything to eat at all.
We waited and waited and waited some more. It took until about noon before we heard that it was very likely the other baby would be getting the liver. The nurse told us that he has been really sick for a long time and that he has missed out 2 or 3 times because he's been too sick for surgery. They still weren't absolutely sure that it was going to work out so we just had to keep waiting. About 330, they said he was going to receive the liver, but wanted us to stick around until they got his liver out and were ready to put the new one in. So we waited some more. About 6 pm, we got another update that they were running behind a bit and it could be a couple more hours. At about 7, we were just getting back from eating dinner, when our nurse caught us in the hall and told us that they were discharging us. At that point, I just broke down and cried. I'm still trying to figure out why. I don't know if it was relief, disappointment, discouragement, or just a release of all the anticipation. Maybe a combination of everything, I don't know.
So we got our stuff put together and finally got to make a bottle for Livi. She scarfed it down. And we were on our way home by 815. It was almost 1230 when we got home. What a crazy 24 hours it was! It was such a roller coaster of a day.
I'm so glad the tranplant worked out for the other baby. Sounds like he needed it much more than Livi does right now. I hope that all continued to go well after we left and that he will recover well and go on to live a full life. May God bless and watch out for him and his family and also the donor family. What a blessing!
Next time, hopefully we will be the recipient instead of a backup. But I guess we learned a few things with this dry run. There are some things that we can do to be better prepared when we get that call again.
So for now we are back to the waiting game.
Monday, August 15, 2011
Alivia's Transplant Fund
Hi Everyone,
Last Saturday my husband lost his grandpa. The family decided to ask anyone that wanted to contribute money to the family, contribute to an account set up for Alivia's Transplant. We've already seen the generosity of many, which we are very grateful for.
So if anyone reading this blog would like to contribute to that account, I have given the contact information for the bank below and also on a sidebar here on the blog. The contributions are anonymous so please know that if you do contribute financially, we are very grateful.
The Bank of Commerce - Rexburg Branch
Alivia Ward Liver Transplant Fund
180 E 2nd N
PO Box 517
Rexburg, ID 83440
(208) 356-8080
We have a long road ahead of us and it is comforting to know that we have a little help with some of the expenses along the way.
Thank you!
The Ward Family
Last Saturday my husband lost his grandpa. The family decided to ask anyone that wanted to contribute money to the family, contribute to an account set up for Alivia's Transplant. We've already seen the generosity of many, which we are very grateful for.
So if anyone reading this blog would like to contribute to that account, I have given the contact information for the bank below and also on a sidebar here on the blog. The contributions are anonymous so please know that if you do contribute financially, we are very grateful.
The Bank of Commerce - Rexburg Branch
Alivia Ward Liver Transplant Fund
180 E 2nd N
PO Box 517
Rexburg, ID 83440
(208) 356-8080
We have a long road ahead of us and it is comforting to know that we have a little help with some of the expenses along the way.
Thank you!
The Ward Family
Sunday, August 14, 2011
Liver transplant program 15 year anniversary picnic
That is a mouthful!
We had clinic on Friday and stayed over so that we could attend the picnic on Saturday. I am so glad we did that. We met so many people who have been exactly where we are. They all were very friendly and more than willing to answer questions and give advice and encouragement. It was also very encouraging to see all they kids running around that have had transplants. They are just regular kids. There are hiccups every once in a while still, but for the most part, they are all healthy and growing and just being regular kids. I think we needed to see that.
They had lunch and face painting and balloon animals and scrapbook pages and games. We took the whole family with us so that the kids could participate. I think they will eventually become friends with the kids. It was good for them to see that these kids can be healthy and normal as well after a transplant.
They spotlighted the oldest transplanted child who is now 15 and also the most recently transplanted little girl, which was done 2 months ago, and also the most recently listed, which was Alivia and another little girl. Alivia is the youngest at this point.
It was so good to connect with all of these wonderful people. They are only going to add to our already awesome support system. I can't wait to get to know them better and form friendships with them. It is gonna be part of our life from now on.
We had clinic on Friday and stayed over so that we could attend the picnic on Saturday. I am so glad we did that. We met so many people who have been exactly where we are. They all were very friendly and more than willing to answer questions and give advice and encouragement. It was also very encouraging to see all they kids running around that have had transplants. They are just regular kids. There are hiccups every once in a while still, but for the most part, they are all healthy and growing and just being regular kids. I think we needed to see that.
They had lunch and face painting and balloon animals and scrapbook pages and games. We took the whole family with us so that the kids could participate. I think they will eventually become friends with the kids. It was good for them to see that these kids can be healthy and normal as well after a transplant.
They spotlighted the oldest transplanted child who is now 15 and also the most recently transplanted little girl, which was done 2 months ago, and also the most recently listed, which was Alivia and another little girl. Alivia is the youngest at this point.
It was so good to connect with all of these wonderful people. They are only going to add to our already awesome support system. I can't wait to get to know them better and form friendships with them. It is gonna be part of our life from now on.
PCMC checkups
Since the last post, we've been back down for liver clinic checkups twice. Both times went well. Her bilirubin level is headed up with each set of labs and her albumin and INR levels are getting worse as well, so her PELD has now gone from 23 to 28 and now as of Friday 31. It was officially recertified at 31 so they should be receiving many more offers with such a high score.
She hasn't gained much weight, but they believe it is just due to additional fluid loss from her ascites. We are still on a high calorie diet and they told us to feed her however much she will eat. There was a ceiling on her intake for a couple of weeks, but they removed that since she seems to be doing and eating so well. She is filling out again so she is putting some weight on. Now that the fluid is gone, maybe it will translate into real weight gain before the next clinic checkup in 2 weeks.
BUT she is holding her own and doing as well as can be expected for now.
Milestones:
In the last couple of weeks, she got 2 teeth while at the hospital this last stay.
She has started eating some solids and is LOVING them. She gets so excited when she sees that spoon coming towards her.
She started rolling completely over. She's even figured out that she can get around a bit by rolling.
She hasn't gained much weight, but they believe it is just due to additional fluid loss from her ascites. We are still on a high calorie diet and they told us to feed her however much she will eat. There was a ceiling on her intake for a couple of weeks, but they removed that since she seems to be doing and eating so well. She is filling out again so she is putting some weight on. Now that the fluid is gone, maybe it will translate into real weight gain before the next clinic checkup in 2 weeks.
BUT she is holding her own and doing as well as can be expected for now.
Milestones:
In the last couple of weeks, she got 2 teeth while at the hospital this last stay.
She has started eating some solids and is LOVING them. She gets so excited when she sees that spoon coming towards her.
She started rolling completely over. She's even figured out that she can get around a bit by rolling.
Monday, July 25, 2011
We're down at PCMC again
We didn't make it long at home before we had to head back to Primary's. Alivia's ascites just wasn't improving. Her abdomin continued to grow and be hard. The diuretics didn't seem to be doing much of anything so on Friday, July 15, Alivia and I headed back down. They did a paracentisis again and drained a large amount of fluid off. Her abdomin went from 52 cm to 44 that night and eventually worked its way down to 41 cm where she consistenly has been measuring. The problem with losing all that fluid is that it was weight. She is now back down to less than 11 pounds, so a loss of about 2 1/2 pounds.
So now our focus is on her nutrition. To gain weight, they've put her on a formula called Pregestimil Lipil. She HATES it. I could trick her into drinking 1/2 - 1 oz of it before she realized what it was....but she had to be pretty hungry at the time. We were able to come up with a mix of 1/2 pregestimil and 1/2 similac 24 and add MCT oil to help it absorb better. She drinks this mixture much better. They placed a ng tube to help her take in more formula and calories. She did so well after 2 days, that we were able to remove it before discharge.
They did an ultrasound to check portal vein flow. It was low, but still good enough that no additional measures needed to be taken.
Things were going really good and then her IV went bad. They placed a new IV in the other hand and shortly after they did that, we noticed a rash on her original IV site. So infectious diseases checked it out and they had to run cultures on it. They ruled out all the infections and viruses they thought it possibly could be and determined that the bad IV had just infiltrated the tissue and caused the rash.
We were finally able to be discharged on Saturday, July 23. Boy were we anxious and excited to be back home.
On a good note, as of July 15, Alivia is officially listed for transplant. And they increased her PELD score to 23. YIKES!
So now our focus is on her nutrition. To gain weight, they've put her on a formula called Pregestimil Lipil. She HATES it. I could trick her into drinking 1/2 - 1 oz of it before she realized what it was....but she had to be pretty hungry at the time. We were able to come up with a mix of 1/2 pregestimil and 1/2 similac 24 and add MCT oil to help it absorb better. She drinks this mixture much better. They placed a ng tube to help her take in more formula and calories. She did so well after 2 days, that we were able to remove it before discharge.
They did an ultrasound to check portal vein flow. It was low, but still good enough that no additional measures needed to be taken.
Things were going really good and then her IV went bad. They placed a new IV in the other hand and shortly after they did that, we noticed a rash on her original IV site. So infectious diseases checked it out and they had to run cultures on it. They ruled out all the infections and viruses they thought it possibly could be and determined that the bad IV had just infiltrated the tissue and caused the rash.
We were finally able to be discharged on Saturday, July 23. Boy were we anxious and excited to be back home.
On a good note, as of July 15, Alivia is officially listed for transplant. And they increased her PELD score to 23. YIKES!
Saturday, July 9, 2011
Transplant list
So we just got home from Primary Children's today (Saturday). It was a long, stressful, emotional, intense few days while we were there.
Alivia's belly has softened up a bit, but it actually is larger than it was before. I'm not quite understanding how that happened, but the doctor didn't seem too concerned about it. I think the diuretics must just be working, just very slowly. Hopefully, they do continue to work so that Alivia can be comfortable.
Thursday was a very intense day. We started the workup of getting her listed on the transplant list. It is a lot of meeting with doctors, surgeons, social workers, transplant coordinators, nutrition specialists, infectious disease people. Everytime we turned around there was someone else coming in to visit with us. We had an aweful lot of information given to us. It seriously has taken me a couple days for it to sink in enough to where I even want to look at all the papers and pamplets again. It was very overwhelming and emotional. Ryan said it all hit him last night and kept him awake much of the night.
It is so strange to be discussing transplant and know that very soon she be getting one and the rest of our lives will be turned upside down again for quite a while. We are so thankful to have such wonderful family and friends and church as our support system. We are going to have to make sure we use it...actually there is no way we could do it without them.
Some of the information that we learned is how the listing works. All these evaluations and labs and stuff that Alivia has been enduring these past few days will all contribute to her PELD score. She is given points based on lots of different criteria. The higher the sum of the points, the closer to the top of the list she gets. Right now, they figure she is at about 16. They said most kids are transplanted at 25-30, but there are kids that have also been transplanted at 18. It is a pretty complicated system. She will move up and down on the list based on her level of sickness and the urgentness of her situation. They said most kids wait less than a year for a liver once they are listed. Once all the workup is completed, they meet on Mondays as a committee and make a recommendation to be placed on the list. They have to get insurance approval and once that is done, they are on the list. They said that by the end of next week or beginning of the week after, we should be listed.
Our family has to do a few things in order to be ready. All the kids have to be caught up on the immunizations, Ryan and I have to get Hep A & B immunizations. We all have to get a Tuberculosis test done. These are all precautions against additional sickness. So that is stuff that we are going to work on getting done this week.
Once an organ has been offered and accepted by the tranplant team, we drop whatever we are doing and head down there. They said that there is usually about 8-12 hours to get the transplant done once the organ is procured. So we won't be traveling far from home for a long time. The transplant can take from 6-12 hours, just depending on the surgeon.
After the transplant she will be in the hospital for 2-3 weeks and then they want us to stay in the area for about a month after that just to make sure that all is well and so we can get labs frequently and checkups frequently.
That is just a piece of the iceburg of information that we have been given. I tried to write stuff down, but it is just too much. I'm gonna have to read through the paperwork multiple times before it will all sink in I'm sure.
Yesterday (Friday) she was to receive a PICC line. They tried first thing in the morning and couldn't get it in so they had to take her down and have radiology do it yesterday afternoon. So she was pretty out of it yesterday have been sedated both times. Poor little think would just sleep and whimper when she was awake. They did successfully get the PICC in that time so then I got to learn how to give her some meds through an IV. Luckily she will only be on that med until Tuesday night.
Today, we were discharged about 9:30. We had a good drive home....although very long. We had to stop in Idaho Falls at the home health place so they could give us the IV and the medicine and all the other stuff that goes with it and some more instruction. We also had to get a couple prescriptions while we were down there so it kindof stretched the drive to about 7 1/2 hours. But we are home and Alivia is noticibly happier. We were all ready to be home.
After we got home, the other kids came home from Grandma's house. Alivia was so happy to see them. She was all smiles and even was laughing so hard. I just cried. We've hardly had a smile let alone any laughs out of her for the last 3 days. It is bringing tears to my eyes as I sit hear typing this. It made me so happy to hear that laugh. She is now peacefully sleeping in her own bed. This is probably the best sleep she's had in 4 days.
Alivia's belly has softened up a bit, but it actually is larger than it was before. I'm not quite understanding how that happened, but the doctor didn't seem too concerned about it. I think the diuretics must just be working, just very slowly. Hopefully, they do continue to work so that Alivia can be comfortable.
Thursday was a very intense day. We started the workup of getting her listed on the transplant list. It is a lot of meeting with doctors, surgeons, social workers, transplant coordinators, nutrition specialists, infectious disease people. Everytime we turned around there was someone else coming in to visit with us. We had an aweful lot of information given to us. It seriously has taken me a couple days for it to sink in enough to where I even want to look at all the papers and pamplets again. It was very overwhelming and emotional. Ryan said it all hit him last night and kept him awake much of the night.
It is so strange to be discussing transplant and know that very soon she be getting one and the rest of our lives will be turned upside down again for quite a while. We are so thankful to have such wonderful family and friends and church as our support system. We are going to have to make sure we use it...actually there is no way we could do it without them.
Some of the information that we learned is how the listing works. All these evaluations and labs and stuff that Alivia has been enduring these past few days will all contribute to her PELD score. She is given points based on lots of different criteria. The higher the sum of the points, the closer to the top of the list she gets. Right now, they figure she is at about 16. They said most kids are transplanted at 25-30, but there are kids that have also been transplanted at 18. It is a pretty complicated system. She will move up and down on the list based on her level of sickness and the urgentness of her situation. They said most kids wait less than a year for a liver once they are listed. Once all the workup is completed, they meet on Mondays as a committee and make a recommendation to be placed on the list. They have to get insurance approval and once that is done, they are on the list. They said that by the end of next week or beginning of the week after, we should be listed.
Our family has to do a few things in order to be ready. All the kids have to be caught up on the immunizations, Ryan and I have to get Hep A & B immunizations. We all have to get a Tuberculosis test done. These are all precautions against additional sickness. So that is stuff that we are going to work on getting done this week.
Once an organ has been offered and accepted by the tranplant team, we drop whatever we are doing and head down there. They said that there is usually about 8-12 hours to get the transplant done once the organ is procured. So we won't be traveling far from home for a long time. The transplant can take from 6-12 hours, just depending on the surgeon.
After the transplant she will be in the hospital for 2-3 weeks and then they want us to stay in the area for about a month after that just to make sure that all is well and so we can get labs frequently and checkups frequently.
That is just a piece of the iceburg of information that we have been given. I tried to write stuff down, but it is just too much. I'm gonna have to read through the paperwork multiple times before it will all sink in I'm sure.
Yesterday (Friday) she was to receive a PICC line. They tried first thing in the morning and couldn't get it in so they had to take her down and have radiology do it yesterday afternoon. So she was pretty out of it yesterday have been sedated both times. Poor little think would just sleep and whimper when she was awake. They did successfully get the PICC in that time so then I got to learn how to give her some meds through an IV. Luckily she will only be on that med until Tuesday night.
Today, we were discharged about 9:30. We had a good drive home....although very long. We had to stop in Idaho Falls at the home health place so they could give us the IV and the medicine and all the other stuff that goes with it and some more instruction. We also had to get a couple prescriptions while we were down there so it kindof stretched the drive to about 7 1/2 hours. But we are home and Alivia is noticibly happier. We were all ready to be home.
After we got home, the other kids came home from Grandma's house. Alivia was so happy to see them. She was all smiles and even was laughing so hard. I just cried. We've hardly had a smile let alone any laughs out of her for the last 3 days. It is bringing tears to my eyes as I sit hear typing this. It made me so happy to hear that laugh. She is now peacefully sleeping in her own bed. This is probably the best sleep she's had in 4 days.
Wednesday, July 6, 2011
July 5
Today, Alivia was experiencing a lot of abdominal pain when she woke up. I was quite concerned because she just was not herself. So I called the Liver Clinic and told them what was going on. They called me back a while later and said that they felt they needed to see her, which meant a trip to Salt Lake. BUT the real kicker is that they wanted us to go the ER at Rexburg because they didn't know if she was stable enough for me to drive her down. They were thinking a possible ambulance ride. That really scared me. So I called Ryan, threw a bag together for myself and Alivia and we headed into the ER. Luckily Primarys had called them and told them I was coming and told them what they wanted them to do. They drew blood and ran some labs, did some x-rays, and just checked her out in general. We were there for an hour and half or so and it was determined that she was not a "toxic baby" and would be ok with us driving her down there, BUT we were not to take our time. So I took Ryan back home, did a couple of things and then we headed out for Salt Lake.
We had a safe trip down here and arrived about 8:30 pm. They admitted us and sent us right up to the room. By 9:00, they had a procedure called a paracentesis scheduled for 9:30. What this procedure does is drain the peritoneal fluid from her abdomin. They use an ultrasound to find the best placement, then a local anesthesia. They make a small incision and insert a catheter in to drain the fluid. Takes about 20 minutes. They drained about 280 ml. Not sure how much that is without a conversion, but I think it is right around 11 ounces. Her abdomin went from 46 cm to 41 and it made it much softer. Right away I could tell she was feeling better.
She had a good night considering the interruptions. Her abdomin was enlarged again this morning so they have put her on a diuretic to remove some more fluid through her pee. They also sent some of the fluid to the lab to be tested to make sure there was no infection. So far things are looking good and she is feeling really good. We went for a nice walk just before lunch and now she is peacefully napping. I'm just waiting to meet with someone from the Liver Clinic to find out what our next move is.
We had a safe trip down here and arrived about 8:30 pm. They admitted us and sent us right up to the room. By 9:00, they had a procedure called a paracentesis scheduled for 9:30. What this procedure does is drain the peritoneal fluid from her abdomin. They use an ultrasound to find the best placement, then a local anesthesia. They make a small incision and insert a catheter in to drain the fluid. Takes about 20 minutes. They drained about 280 ml. Not sure how much that is without a conversion, but I think it is right around 11 ounces. Her abdomin went from 46 cm to 41 and it made it much softer. Right away I could tell she was feeling better.
She had a good night considering the interruptions. Her abdomin was enlarged again this morning so they have put her on a diuretic to remove some more fluid through her pee. They also sent some of the fluid to the lab to be tested to make sure there was no infection. So far things are looking good and she is feeling really good. We went for a nice walk just before lunch and now she is peacefully napping. I'm just waiting to meet with someone from the Liver Clinic to find out what our next move is.
Things are changing
Friday, June 24, we got labs done for Alivia. I waited and waited all day for PCMC to call me with the results. Finally I called them and they had not received all the results yet, but the ones they had received were clotted so they were kindof inconclusive. I never received a call back that day with the rest of the results. I was a little antsy all weekend wondering where things were after our last hospital stay 2 weeks ago. Sunday, her belly measured 2 cm larger than it had the last two weeks and then Monday it was another cm larger. This means that she is probably developing ascities. Her belly is really looking large and is pretty hard.
Yesterday afternoon I finally got a call from them and now wish I hadn't of. The news was not good, not what we wanted to hear. Her bilirubin level was higher than 2 weeks ago when we went down to the hospital last. It was at an 11. I talked with Christa, the nurse practitioner, and she said that they are fairly certain that the Kasai is failing. They won't know for sure until we come down next week for her next appointment, but they are pretty sure. So we are now scheduling an extra day for this appointment so that they can start doing whatever has to get done to get Alivia listed on the transplant list. They said a transplant will likely have to happen within a couple of months. I don't know much about the whole process yet, but I've got some research to do and we will become very educated while we are down there next weekend.
Meanwhile, she still is a happy little girl. Although I could tell yesterday that her enlarge tummy is not very comfortable for her. I will have to make sure Christa knows about this new development and see if we need to get her down there sooner than next week to see about treating this. It is so hard to watch her go through this. I know it is only going to get harder the further along we get. She is going to become much sicker between now and when she can have a transplant. It is so hard knowing that. It breaks my heart. I'm sitting here at 5:30 in the morning typing this because I can't shut my brain off and I'm just crying my eyes out.
I know there is a reason why this is happening. I know our Heavenly Father has a plan for Alivia. It still just breaks my heart that my 5 month old baby is going to become so sick. I also know that we are not alone in this. There are hundreds of other families that are going through this too. I just hope and pray that we will have the strength to endure what lies ahead of us.
Yesterday afternoon I finally got a call from them and now wish I hadn't of. The news was not good, not what we wanted to hear. Her bilirubin level was higher than 2 weeks ago when we went down to the hospital last. It was at an 11. I talked with Christa, the nurse practitioner, and she said that they are fairly certain that the Kasai is failing. They won't know for sure until we come down next week for her next appointment, but they are pretty sure. So we are now scheduling an extra day for this appointment so that they can start doing whatever has to get done to get Alivia listed on the transplant list. They said a transplant will likely have to happen within a couple of months. I don't know much about the whole process yet, but I've got some research to do and we will become very educated while we are down there next weekend.
Meanwhile, she still is a happy little girl. Although I could tell yesterday that her enlarge tummy is not very comfortable for her. I will have to make sure Christa knows about this new development and see if we need to get her down there sooner than next week to see about treating this. It is so hard to watch her go through this. I know it is only going to get harder the further along we get. She is going to become much sicker between now and when she can have a transplant. It is so hard knowing that. It breaks my heart. I'm sitting here at 5:30 in the morning typing this because I can't shut my brain off and I'm just crying my eyes out.
I know there is a reason why this is happening. I know our Heavenly Father has a plan for Alivia. It still just breaks my heart that my 5 month old baby is going to become so sick. I also know that we are not alone in this. There are hundreds of other families that are going through this too. I just hope and pray that we will have the strength to endure what lies ahead of us.
Saturday, June 11, 2011
9 weeks later
After 9 weeks, we are back down at PCMC. On Thursday, Alivia really started looking yellow to me. I was concerned. She had thrown up her first bottle that morning, which she doesn't usually do. And she was sleeping a lot more than she usually does. She wouldn't eat more than 3-3 1/2 oz at a feeding which is really unusual for her. So after expressing my concerns to my mom and a couple of friends and their encouraging words, I decided to call the Liver clinic Friday morning. I told them my concerns and her unusual behavior the day before.
They had me take her in to get labs at the hospital that morning. At about 2:30, the clinic called me back and told me that the labs were concerning. Her bilirubin level had more than doubled since her last checkup just 2 weeks prior. They suspected that it was a bacterial infection called Cholangitis. This is fairly common in kids who have had the Kasai procedure. What happens is bacterial gets into the small intestine that is now attached directly to the liver and the bacteria eventually works its way up into the liver causing it to swell or become blocked. It can be very serious if not treated.
They treat cholangitis with an antibiotic administered through an IV. They wanted us to head down right away so they could get it started. So I called Ryan and told him what was going on and then packed our bags and headed down. Ryan stayed home with the other kids.
Alivia and I got down here about 8 pm and they had us get checked right into a room. We have our own room this time, which is nice. They did the usual vitals and then we just hung out until bed time around 10 pm. I had just gotten Alivia to sleep when doctors started coming in wanting to check her out, so she got woke up. I just got her back to sleep from that when they came in to draw more blood for new labs. And then there was the urine sample that they tried 4 times to collect. She was very unhappy about that. Then later they came back in to put an IV in to get her antibiotics going. Finally about 4:30, they stopped coming in so we were able to get 3 1/2 hours of good sleep....or as good as you can get in a hospital. Then at 8 am they started coming around again. It was a long night, but hopefully things will be better tonight.
So far it has been a pretty quiet day. We've just beening hanging out in the room...Alivia sleeping and I've been reading, watching tv, responding to texts. I'm thinking a nap is sounding really good.
After observing her and reviewing the labs, the doctor said her bili actually started going back down a little last night on its own before the antibiotic. They aren't 100 percent sure it is the cholangitis, but unless something else shows up on the labs, that is how they are treating it. She doesn't display any sort of pain and she hasn't had fevers so that is why they aren't 100 percent. They talked of maybe doing an ultrasound of the liver too.
I guess for now, we'll just hold tight and see what happens next. Keep Alivia in your prayers. We don't want this to be her Kasai failing. I'll keep ya posted as time permits.
They had me take her in to get labs at the hospital that morning. At about 2:30, the clinic called me back and told me that the labs were concerning. Her bilirubin level had more than doubled since her last checkup just 2 weeks prior. They suspected that it was a bacterial infection called Cholangitis. This is fairly common in kids who have had the Kasai procedure. What happens is bacterial gets into the small intestine that is now attached directly to the liver and the bacteria eventually works its way up into the liver causing it to swell or become blocked. It can be very serious if not treated.
They treat cholangitis with an antibiotic administered through an IV. They wanted us to head down right away so they could get it started. So I called Ryan and told him what was going on and then packed our bags and headed down. Ryan stayed home with the other kids.
Alivia and I got down here about 8 pm and they had us get checked right into a room. We have our own room this time, which is nice. They did the usual vitals and then we just hung out until bed time around 10 pm. I had just gotten Alivia to sleep when doctors started coming in wanting to check her out, so she got woke up. I just got her back to sleep from that when they came in to draw more blood for new labs. And then there was the urine sample that they tried 4 times to collect. She was very unhappy about that. Then later they came back in to put an IV in to get her antibiotics going. Finally about 4:30, they stopped coming in so we were able to get 3 1/2 hours of good sleep....or as good as you can get in a hospital. Then at 8 am they started coming around again. It was a long night, but hopefully things will be better tonight.
So far it has been a pretty quiet day. We've just beening hanging out in the room...Alivia sleeping and I've been reading, watching tv, responding to texts. I'm thinking a nap is sounding really good.
After observing her and reviewing the labs, the doctor said her bili actually started going back down a little last night on its own before the antibiotic. They aren't 100 percent sure it is the cholangitis, but unless something else shows up on the labs, that is how they are treating it. She doesn't display any sort of pain and she hasn't had fevers so that is why they aren't 100 percent. They talked of maybe doing an ultrasound of the liver too.
I guess for now, we'll just hold tight and see what happens next. Keep Alivia in your prayers. We don't want this to be her Kasai failing. I'll keep ya posted as time permits.
Sunday, April 17, 2011
pictures
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| Alivia March 30, 2 days before the surgery. This would have been the 2nd day in the hospital...the day we got the diagnosis of Biliary Atresia. |
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| April 3, 2 days AFTER surgery. This is when she got out of PICU and back into a regular baby room. |
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| Wednesday, April 6. The day before she got released from the hospital. 5 days post surgery |
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| This is also on the 6th. This is for everyone to see her battle wound. |
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| Today, Sunday, April 17. Look how happy she is. She looks and obviously feels much better. |
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| 17 days after the surgery, this is what her scar is looking like. It is healing really well and someday might not hardly show up. |
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| Kindof hard to see in the picture, but she is much less yellow that she was 3 weeks ago. |
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