Written Saturday:
Today we laid Addy to rest. The past two days have been exhausting but the outpouring of love has been amazing. To see friends and family that we haven't seen in a very long time to even our nurses and doctors that took care of Addy, it was once again obvious how much of an impact Addy had on so many. When we got home today, we got the mail and out mailbox was stuffed to the rim with cards. Pat and I sat and opened them all and were once again in awe of all the people who sent their sympathies.
Even after Addy was gone from Earth she has still found a way to brighten other's days. While we kept some of the flower arrangements, we decided to take some to the local nursing home so some of the residents could enjoy them as well, Addy's great-great grandmother included.
Today:
Pat and I decided that we needed to get away, just the two of us. We took a trip down to Gatlinburg and took some time for just us. We realized that for a while everything is going to remind us of Addy but that isn't a bad thing. We are home and are going to try to get back into the swing of things.
There is another shirt design being sold that is orange with blue writing that says " AddySTRONG forever." Some of the junior high students came up with the idea. If you are interested in ordering, send an email to Tammy Hardesty at tamsboys02@yahoo.com.
Saturday, March 30, 2013
Monday, March 25, 2013
One more night with our baby
As they were doing the tests to declare Addy brain dead, they found a trickle of blood in her brain stem. This doesn't change anything other than the fact that they cannot declare her brain dead today. They gave us three options, we could take her off the ventilator, which would not allow her to donate organs; we could do donation after cardiac death, which means that her heart would stop and then they could take organs below her diaphragm; or we could wait another night, do another brain scan and declare her tomorrow. We chose to have another night with Addy. The biggest deciding factor was the donation. We found out that her heart is needed in New York by a four month old and there are 7 other children waiting for a heart at the same center. There is also a chance her kidneys will be going to California. Our sister-in-law said that would be perfect because California is where we went on our honeymoon and New York was where we took our last vacation before we had Addy. It is really important for us to donate her organs if possible because if we can save another family from going through this heartbreak, then we will.
Donating
We just found out that someone in New York is interested in Addy's heart and someone in California is interested in the kidneys. Her ammonia still hasn't been low enough for the doctors to officially pronounce her brain dead, but she is having dialysis this morning and that should bring it down enough for them to evaluate her. The transplant people are trying to get a echo done sooner rather than later so they can make sure it is a match, but they usually have to wait. They are hoping to not prolong things for us. Regardless this will be our last day with Addy.
It seems fitting that she came to us on the hottest day of the year and she will leave us during a snow storm in the Spring. While we were here at the hospital, one of the movies we watched was The Extraordinary Life of Timothy Green. As Pat and I were talking last night we decided she was similar to Timothy Green only she was Addy Yellow. While Timothy had leaves, Addy brought some yellow from the sun and that is why she had such bright eyes and a beautiful smile (and her skin was yellow).
It has been overwhelming to get on Facebook and Twitter the past few days. So many have lifted us in their prayers and we will never be able to say how grateful we are.
It seems fitting that she came to us on the hottest day of the year and she will leave us during a snow storm in the Spring. While we were here at the hospital, one of the movies we watched was The Extraordinary Life of Timothy Green. As Pat and I were talking last night we decided she was similar to Timothy Green only she was Addy Yellow. While Timothy had leaves, Addy brought some yellow from the sun and that is why she had such bright eyes and a beautiful smile (and her skin was yellow).
It has been overwhelming to get on Facebook and Twitter the past few days. So many have lifted us in their prayers and we will never be able to say how grateful we are.
Sunday, March 24, 2013
That's it
Because of Addy's liver disease, her body isn't able to feet rid of some of the things it needs to. One of those is ammonia. The others are things that the doctors can't measure. The doctors had been doing everything they could to control Addy's ammonia levels but her body kept producing more. This among the other things they can't measure, caused her brain to swell. Yesterday the doctors did an MRI on her brain and found no blood flow. This means there is a possibility of her being brain dead. The doctor told us that she is almost certain this is the case. Per hospital protocol she needs to be put on and EEG again, have two neurological exams and other tests ran. However, the neuro doctors will not come exam her if her ammonia is high because it will not be a valid test. Today we were given the option of continuing treatment as we have been but little to no hope of it doing anything, waiting on the neuro exam or halting all care. Our first question was how we could donate her organs.
We met with the organ retrieval person and she had put Addy's organs out locally. Because the doctors were not able to diagnose Addy, no one was interested because there is a chance that whatever she has can be transferred to the recipient. This actually happened to us a while ago. A liver became available but there was a chance another disease could come along with it so the doctors denied it. Now her organs are being put on the national list to see if anything is interested. This takes several hours and if someone is interested, Addy has to be declared brain dead by the hospital. That puts us at waiting around 24 hours for all the necessary tests.
Today Addy was baptized with her family around her. Thank you Pastor Dairel and Cindy for coming on such short notice.
We want to thank everyone who has supported is in any way during all this. We always knew Addy was a special girl and we know that God just misses her and wants her back.
We met with the organ retrieval person and she had put Addy's organs out locally. Because the doctors were not able to diagnose Addy, no one was interested because there is a chance that whatever she has can be transferred to the recipient. This actually happened to us a while ago. A liver became available but there was a chance another disease could come along with it so the doctors denied it. Now her organs are being put on the national list to see if anything is interested. This takes several hours and if someone is interested, Addy has to be declared brain dead by the hospital. That puts us at waiting around 24 hours for all the necessary tests.
Today Addy was baptized with her family around her. Thank you Pastor Dairel and Cindy for coming on such short notice.
We want to thank everyone who has supported is in any way during all this. We always knew Addy was a special girl and we know that God just misses her and wants her back.
Friday, March 22, 2013
Had a bad day
This hasn't been our best day so far. All day yesterday Addy had a fever on and off. They tried to help it by keeping cool washcloths on her and putting ice packs around her. She also wasn't having very much urine output so they put a cathedar in. Once they did that she had a TON of output. The nurse said it was the equivalent of an adult have 2 liters in their bladder. They weren't positive why she wasn't peeing but they guessed that is was because her liver is getting bigger and blocking the bladder. The sites where her lines are continue to bleed which is an effect of her clotting level being so high. The plasmapheresis has helped that number a ton, but it is still not great and only helps so long.
The big concern is that she had a fever but no known cause. They had run blood and urine cultures and had found nothing. The doctors considered taking out her PICC line because there was a chance bacteria was getting into her body through that. The issue with that is, once again, the risk of her bleeding.
The doctors decided to take her off the morphine so that she could wake up and they could do a neural exam. When they took her off though she didn't wake up. They checked her ammonia level again and it was in the 400's the highest it has been. That could have been the cause of her not waking up because high levels of ammonia can effect brain function. To get rid of the ammonia they decided to do dialysis which would get rid of what is in Addy's body now, but not any more she may produce, so we may have to do it more than just today. They also did an EEG which shows brain activity. One more thing that was ordered was an ultrasound of her liver. This is where some good news comes. They determined she has Pancreatitis, which is the inflammation of the pancreas. That could be the cause of the fever and high ammonia levels. Of course there is bad news with this, there are no real treatments for it. All you can really do is let the pancreas rest. In order to do that, they have stopped the formula feeds (I don't think I shared they had put in a feeding tube) and she is strictly on fluids. More good news though, the doctors don't think that will keep her from getting a transplant.
They also decided to put an arterial line in, which is like an IV in one of the veins on her arm. This is so they can constantly measure her blood pressure. This is another thing that Addy would have had to have for the transplant anyway.
As far as donors go Addy is now in the 1B category on the donor list. That means she no longer only gets offers from our district but now this whole side of the country. We started testing for live donors but it is a long process and we are still waiting on that. We would still like to do a deceased donor if possible but at this point we just want Addy better.
The big concern is that she had a fever but no known cause. They had run blood and urine cultures and had found nothing. The doctors considered taking out her PICC line because there was a chance bacteria was getting into her body through that. The issue with that is, once again, the risk of her bleeding.
The doctors decided to take her off the morphine so that she could wake up and they could do a neural exam. When they took her off though she didn't wake up. They checked her ammonia level again and it was in the 400's the highest it has been. That could have been the cause of her not waking up because high levels of ammonia can effect brain function. To get rid of the ammonia they decided to do dialysis which would get rid of what is in Addy's body now, but not any more she may produce, so we may have to do it more than just today. They also did an EEG which shows brain activity. One more thing that was ordered was an ultrasound of her liver. This is where some good news comes. They determined she has Pancreatitis, which is the inflammation of the pancreas. That could be the cause of the fever and high ammonia levels. Of course there is bad news with this, there are no real treatments for it. All you can really do is let the pancreas rest. In order to do that, they have stopped the formula feeds (I don't think I shared they had put in a feeding tube) and she is strictly on fluids. More good news though, the doctors don't think that will keep her from getting a transplant.
They also decided to put an arterial line in, which is like an IV in one of the veins on her arm. This is so they can constantly measure her blood pressure. This is another thing that Addy would have had to have for the transplant anyway.
As far as donors go Addy is now in the 1B category on the donor list. That means she no longer only gets offers from our district but now this whole side of the country. We started testing for live donors but it is a long process and we are still waiting on that. We would still like to do a deceased donor if possible but at this point we just want Addy better.
Thursday, March 21, 2013
Definitely AddySTRONG
If there was ever any question if Addy was a fighter, she proved to everyone that she was. After her breathing tube was placed, the doctors decided to put and IJ line in as well. This line is similar to her PICC line but it goes into her jugular into her neck. The good part of them doing all this now is that they would have to do it before her transplant anyways, but now it is done. Once all that was done, they began the plasmapheresis. When I walked back into the room (we weren't allowed to stay while they put in the lines) the nurse said "She is a fighter." Even though Addy was sedated, she was still a wiggle worm and moving all over the bed. Of course that isn't what they want. She started grabbing at all of her lines as well, which really isn't good. They tried to restrain her but she was still moving like crazy. Our nurse was literally holding her down for 45 minutes during the plasmapheresis so that the lines weren't disturbed. The exchange takes about 2 hours total. The plasma that was going into her was a yellowish color which means it is healthy, the plasma coming out was a reddish brown. Hopefully hers will start to look better the more times they do it. Addy didn't seem to be in pain or discomfort, she just didn't want to sit still (She gets that from her dad). They eventually gave her a medicine that paralyzed her. She stayed on that medicine throughout the night but the doctors have decided to take her off of it today. She will get another plasma exchange today and they are hoping if they up the dosage of the sedative, Addy will stay still enough. They are also hoping to take her off the ventilator today. She has to be put on that because of when they were putting in all of the lines.
While it was scary when they told us she needed a breathing tube, we knew that was what was best for her and it was going to come sooner or later. This way we can get used to it before her surgery and we aren't completely taken off guard by what she will look like after her transplant.
While it was scary when they told us she needed a breathing tube, we knew that was what was best for her and it was going to come sooner or later. This way we can get used to it before her surgery and we aren't completely taken off guard by what she will look like after her transplant.
Wednesday, March 20, 2013
Movin' Down
Yesterday Addy started acting extremely tired and just not like herself. We asked the doctors to check her hemoglobin, and when they did, they found it was down to 5. They decided to do another transfusion. While she gets the transfusions, the nurses constantly check her vitals. After the second time of checking vitals, they found she had a temperature. Because of the risk of it being caused by the transfusion, they stopped. They did testing on the blood and found nothing was wrong with it so the fever was coming from something else. The doctors were not really wanting to check for a virus because that could take her off the transplant list because she wouldn't be considered healthy enough to go through the procedure. They drew blood cultures to check for infection and nothing has shown up yet, but they will continue to watch them. They also did a chest X-ray to make sure there was no fluid in her lungs and a head CT to make sure there was no bleeding. Both came back and looked good.
So that Addy could be watched more closely, it was decided we would move to the Pediatric Intensive Care Unit (PICU). Once down there is seemed like we had 10 nurses and doctors in our room as soon as we arrived. We found out that every nurse on the floor only takes care of 2 patients and they must come in at least every two hours. After the PICU doctors talked to the GI doctors and the transplant team, they came up with a plan of action. The doctors decided that the Vitamin K was no longer doing anything for Addy's clotting levels. To help that they have decided to do daily plasmapheresis. This means they will take all of the plasma out of Addy and replace it with new plasma. The doctor explained to us that if she was in kidney failure, she would be in dialysis but with liver failure, this is like dialysis. In order to do this, Addy has to be sedated and put on a breathing tube. The doctors told us this will probably be until the transplant. Right now they are putting the breathing tube in and we are waiting. It is a two hour surgery and they are an hour in.
There is good news to all this. Just moving to the PICU puts Addy into a new category on the transplant list. Having the breathing tube puts her even higher. The doctors have told us the transplant team will be getting calls for more offers hopefully. They still can't predict when one will become available but they all seem optimistic that it could happen even more quickly now.
We are really going to miss being on the 8th floor. We got to be really close to some of the nurses and PCTs. When we would walk through the hallways it was nice because just about everyone would say hi to Addy and when they came into our rooms it wasn't an unfamiliar face. They took great care of not only Addy but us as well.
Here is our new address:
Addy Snyder
Room 531, Unit 5a
Children's Hospitals of Pittsburgh of UPMC
one Children's Hospital Drive
4401 Penn Avenue
Pittsburgh, PA 15224
So that Addy could be watched more closely, it was decided we would move to the Pediatric Intensive Care Unit (PICU). Once down there is seemed like we had 10 nurses and doctors in our room as soon as we arrived. We found out that every nurse on the floor only takes care of 2 patients and they must come in at least every two hours. After the PICU doctors talked to the GI doctors and the transplant team, they came up with a plan of action. The doctors decided that the Vitamin K was no longer doing anything for Addy's clotting levels. To help that they have decided to do daily plasmapheresis. This means they will take all of the plasma out of Addy and replace it with new plasma. The doctor explained to us that if she was in kidney failure, she would be in dialysis but with liver failure, this is like dialysis. In order to do this, Addy has to be sedated and put on a breathing tube. The doctors told us this will probably be until the transplant. Right now they are putting the breathing tube in and we are waiting. It is a two hour surgery and they are an hour in.
There is good news to all this. Just moving to the PICU puts Addy into a new category on the transplant list. Having the breathing tube puts her even higher. The doctors have told us the transplant team will be getting calls for more offers hopefully. They still can't predict when one will become available but they all seem optimistic that it could happen even more quickly now.
We are really going to miss being on the 8th floor. We got to be really close to some of the nurses and PCTs. When we would walk through the hallways it was nice because just about everyone would say hi to Addy and when they came into our rooms it wasn't an unfamiliar face. They took great care of not only Addy but us as well.
Here is our new address:
Addy Snyder
Room 531, Unit 5a
Children's Hospitals of Pittsburgh of UPMC
one Children's Hospital Drive
4401 Penn Avenue
Pittsburgh, PA 15224
Monday, March 18, 2013
Movin' on Up
Not really up, just down the hall. On Saturday Pat was taking Addy down the hallway to look out the windows when he noticed an open room. He asked our nurse what it would take to get a room with a better view, just joking. Before we knew it, the nurse had asked her supervisor and we were moving our stuff. We now look out over the city instead of at the other side of the hospital and we can see the TV from the couch!
The new address for the hospital is
Addresses
We have had quite a few people ask us about sending cards and such, so here is the email to send an e-card
http://www.chp.edu/CHP/ecards
The address for the hospital is
Addy Snyder
Room 824, Unit 8 B
Children's Hospitals of Pittsburgh of UPMC
one Children's Hospital Drive
4401 Penn Avenue
Pittsburgh, PA 15224
The only thing that has changed is our room is now 833.
That's all the news for now!
The new address for the hospital is
Addresses
We have had quite a few people ask us about sending cards and such, so here is the email to send an e-card
http://www.chp.edu/CHP/ecards
The address for the hospital is
Addy Snyder
Room 824, Unit 8 B
Children's Hospitals of Pittsburgh of UPMC
one Children's Hospital Drive
4401 Penn Avenue
Pittsburgh, PA 15224
The only thing that has changed is our room is now 833.
That's all the news for now!
Saturday, March 16, 2013
Saturday Afternoon Update
On Wednesday Addy had to have another blood transfusion. Her hemoglobin was low again and she was acting pretty lethargic. The doctors thought it was because they had been taking so much blood from her to run tests. They decided that instead of taking blood everyday, they would back off and only check her ammonia every other day and quit checking her glucose. Both have been staying steady so they felt safe not checking as often. After the transfusion, she started acting more like herself and was back to smiling and playing.
Yesterday as the IV team was changing her PICC line dressing the line got pulled out a little bit. They took her back down and instead of pulling it completely back out, they just replaced it. She didn't bleed as bad this time so now she doesn't have to have her arm board on.
As far as the live donor goes, they are in the second step and are now checking the tissue type. We aren't sure how long that takes but they took a blood sample on Thursday from Addy.
Addy now has some clothes she can wear! Stephanie's mom took some onesies and put ribbon up the side so that Addy can wear them with her PICC line. Addy doesn't mind being naked, she actually loves it, but we have started taking her on more walks through the hospital, so she should probably have some clothes on!
We also got a pretty special package in the mail. Our friend Barb got an AddySTRONG onesie made and put it on a teddy bear for Addy. She really liked it!
We continue to get cards and have had to move to another wall to display them all. When a new nurse comes into our room that is almost always the first thing that they comment on. Thank you to everyone who has sent one. While Addy may not understand, Pat and I enjoy getting them everyday.
Other than that there is nothing to report. We are still just waiting!
Yesterday as the IV team was changing her PICC line dressing the line got pulled out a little bit. They took her back down and instead of pulling it completely back out, they just replaced it. She didn't bleed as bad this time so now she doesn't have to have her arm board on.
As far as the live donor goes, they are in the second step and are now checking the tissue type. We aren't sure how long that takes but they took a blood sample on Thursday from Addy.
Addy now has some clothes she can wear! Stephanie's mom took some onesies and put ribbon up the side so that Addy can wear them with her PICC line. Addy doesn't mind being naked, she actually loves it, but we have started taking her on more walks through the hospital, so she should probably have some clothes on!
We also got a pretty special package in the mail. Our friend Barb got an AddySTRONG onesie made and put it on a teddy bear for Addy. She really liked it!
We continue to get cards and have had to move to another wall to display them all. When a new nurse comes into our room that is almost always the first thing that they comment on. Thank you to everyone who has sent one. While Addy may not understand, Pat and I enjoy getting them everyday.
Other than that there is nothing to report. We are still just waiting!
Monday, March 11, 2013
Still waiting
Once again there isn't a whole lot to update. The doctors got a little concerned over the weekend that Addy's ammonia levels were climbing again but the past two days the number has come back down so that seems to be under control. Other than that we are still just waiting on a liver. We have had quite a few people ask for the number for the live donor coordinator so we wanted to put it on here if anyone was interested 412-647-5512. They are looking for someone smaller so that the liver will be a better fit but they are taking everyone's information and then sifting back through to test people.
In other news, we had some visitors this weekend. Brian, Andrea and Jenna came to see us Saturday and then a little on Sunday before they headed back to Lima. Stephanie's parents also came over on Sunday. We were able to take Addy outside both days so she could enjoy the sunlight a little. I think she is starting to get as antsy as we are about being stuck in the room all day. We have started going on walks around the hospital, but we are going to have to bring her stroller in or get a wagon because she is getting heavy! She also has at least 6 teeth coming in so she hasn't been the happiest thing. It is always stressful because we aren't sure if she is fussy/not feeling good because of her teeth, her liver or something else.
Pat and I have been reading the Duck Commander book that Willie Robertson and his wife wrote about how the company came to be. Many times throughout the book it is mentioned how God always has the best timing whether we think it is or not. Pat and I have said that a lot of times over the past few months and when one of us starts to question it, it is nice to have the other to remind us.
I think that is all to tell for now! Enjoy the pictures!
In other news, we had some visitors this weekend. Brian, Andrea and Jenna came to see us Saturday and then a little on Sunday before they headed back to Lima. Stephanie's parents also came over on Sunday. We were able to take Addy outside both days so she could enjoy the sunlight a little. I think she is starting to get as antsy as we are about being stuck in the room all day. We have started going on walks around the hospital, but we are going to have to bring her stroller in or get a wagon because she is getting heavy! She also has at least 6 teeth coming in so she hasn't been the happiest thing. It is always stressful because we aren't sure if she is fussy/not feeling good because of her teeth, her liver or something else.
Pat and I have been reading the Duck Commander book that Willie Robertson and his wife wrote about how the company came to be. Many times throughout the book it is mentioned how God always has the best timing whether we think it is or not. Pat and I have said that a lot of times over the past few months and when one of us starts to question it, it is nice to have the other to remind us.
I think that is all to tell for now! Enjoy the pictures!
Wednesday, March 6, 2013
How Can We Help?
That is something Pat and I have heard a lot over the past few months and we have never been able to really answer with anything but prayers. Thanks to our amazing family and friends there are now two benefit dinners going to be held in Addy's honor. We wanted to share the details with everyone in case anyone was interested.
March 16th Walhonding Valley Fire Station, 5:00
The WVFD firefighters soup supper will be in support of Addy Snyder, Daughter of Firefighter Pat Snyder and Teacher Stephanie Lapp Snyder. Addy is in the Hospital requiring a Liver transplant. We would like to ask for your support for one of our WVFD family members. The soup supper is donation based and all money will go to help the Snyder family. Bingo to follow the supper! If you have any questions, please call 740-824-3100!
March 22, River View High School
The AddySTRONG Benefit will be held at RVHS on March 22nd from 5-8. We will be serving spaghetti, salad, bread, and dessert. Cost is $10. Children ages 5-10 are $5 and children under 5 are free. We will be pre selling tickets. We will also have a Chinese raffle and 50/50 drawing. Contact Sharon Wachtel at ftwach@roadrunner.com if you would like to order tickets.
There are also still AddySTRONG shirts for sale until Friday.
Thank you again for everyone's love and support. Our nurses keep making fun that Addy has her own wallpaper with all of the cards that have been sent to her
In Addy news, nothing has changed, other then she is now 8 months old! After her blood transfusion yesterday, she was much perkier and acting more like herself. Other than that we are still just waiting!
March 16th Walhonding Valley Fire Station, 5:00
The WVFD firefighters soup supper will be in support of Addy Snyder, Daughter of Firefighter Pat Snyder and Teacher Stephanie Lapp Snyder. Addy is in the Hospital requiring a Liver transplant. We would like to ask for your support for one of our WVFD family members. The soup supper is donation based and all money will go to help the Snyder family. Bingo to follow the supper! If you have any questions, please call 740-824-3100!
March 22, River View High School
The AddySTRONG Benefit will be held at RVHS on March 22nd from 5-8. We will be serving spaghetti, salad, bread, and dessert. Cost is $10. Children ages 5-10 are $5 and children under 5 are free. We will be pre selling tickets. We will also have a Chinese raffle and 50/50 drawing. Contact Sharon Wachtel at ftwach@roadrunner.com if you would like to order tickets.
There are also still AddySTRONG shirts for sale until Friday.
Thank you again for everyone's love and support. Our nurses keep making fun that Addy has her own wallpaper with all of the cards that have been sent to her
In Addy news, nothing has changed, other then she is now 8 months old! After her blood transfusion yesterday, she was much perkier and acting more like herself. Other than that we are still just waiting!
Tuesday, March 5, 2013
Keeping Everyone Updated
Not a whole lot to update again today. Addy had to get a blood transfusion today because her hemoglobin was so low from all of the lab draws. It was over a 4 hour period so she got it pretty slow. The nice thing is that she gets it through her PICC line so we can still hold her and move her around. She enjoys sitting on the couch with us and just hanging out.
Pat and I have been able to be somewhat productive while we have been here. I have read The City of Bones and watched the first two episodes of The Amazing Race that I missed. Plus I have beaten all the puzzles on What's the Word. I have also gotten some of my Master's work done so that I can try to stay ahead. Pat has read almost all of The Hunger Games and started reading Willie Robertson's book. We also watched Mr. Popper's Penguins. Something else we discovered is that our floor has a Wii on wheels. You can take the console to your room and play games so that is what we did last night.
Pat and I have been able to be somewhat productive while we have been here. I have read The City of Bones and watched the first two episodes of The Amazing Race that I missed. Plus I have beaten all the puzzles on What's the Word. I have also gotten some of my Master's work done so that I can try to stay ahead. Pat has read almost all of The Hunger Games and started reading Willie Robertson's book. We also watched Mr. Popper's Penguins. Something else we discovered is that our floor has a Wii on wheels. You can take the console to your room and play games so that is what we did last night.
Pat and Addy taking a nap today
Playtime!
Addy's new trick! The rails now have to go all the way up on her bed when we aren't right there.
Saturday, March 2, 2013
Addresses
We have had quite a few people ask us about sending cards and such, so here is the email to send an e-card
http://www.chp.edu/CHP/ecards
The address for the hospital is
Addy Snyder
Room 824, Unit 8 B
Children's Hospitals of Pittsburgh of UPMC
one Children's Hospital Drive
4401 Penn Avenue
Pittsburgh, PA 15224
http://www.chp.edu/CHP/ecards
The address for the hospital is
Addy Snyder
Room 824, Unit 8 B
Children's Hospitals of Pittsburgh of UPMC
one Children's Hospital Drive
4401 Penn Avenue
Pittsburgh, PA 15224
Weekend Update
Not a whole lot to report today. Yesterday her ammonia levels were up so that was a little concerning, but after giving her a dose of Lactelose (a medicine she was already on) and re-running the lab, it was back to normal. The doctors told us that it is a very picky lab so it could have just been how it was ran or the amount of time it took to run the lab.
Addy is still happy and playing. For some reason she has decided sleeping at night is no longer necessary. Yesterday we tried to keep her up for most of the day but she still fought the sleep at night. She will sleep in our arms but as soon as we go to put her in her bed, she is back awake. I am guessing she is missing home just as much as we are.
Other than that we are still just waiting for a phone call!
Addy is still happy and playing. For some reason she has decided sleeping at night is no longer necessary. Yesterday we tried to keep her up for most of the day but she still fought the sleep at night. She will sleep in our arms but as soon as we go to put her in her bed, she is back awake. I am guessing she is missing home just as much as we are.
Other than that we are still just waiting for a phone call!
Thursday, February 28, 2013
Blessed
Pat and I have been absolutely overwhelmed with all of the love and support we have received through Addy's journey but probably not as much as we have been the last week.
Addy's wall is covered in cards that have been sent, out blog posts have been read constantly, and our transplant coordinator said her phone has been ringing off the hook with people asking about what they can do for Addy. On top of that the students at River View donated 105 units of blood in Addy's honor yesterday, and they have organized a shirt selling fundraiser and are having a bake sale next week! I have always cherished living at River View because it seems that our motto is "It takes a village to raise a child" and that is so obvious. I hope that everyone who has done anything for us knows how much we appreciate everything. We have had numerous people tell us that they can't believe how we are dealing with everything. It is because God has put so many amazing people around us! Thank you to everyone!
If you are interested in buying a shirt, they are $10 and are blue with orange writing that say Addystrong on them (picture below). You can email your orders to Darcy Miller at darcy.miller@omeresa.net.
Addy's wall is covered in cards that have been sent, out blog posts have been read constantly, and our transplant coordinator said her phone has been ringing off the hook with people asking about what they can do for Addy. On top of that the students at River View donated 105 units of blood in Addy's honor yesterday, and they have organized a shirt selling fundraiser and are having a bake sale next week! I have always cherished living at River View because it seems that our motto is "It takes a village to raise a child" and that is so obvious. I hope that everyone who has done anything for us knows how much we appreciate everything. We have had numerous people tell us that they can't believe how we are dealing with everything. It is because God has put so many amazing people around us! Thank you to everyone!
If you are interested in buying a shirt, they are $10 and are blue with orange writing that say Addystrong on them (picture below). You can email your orders to Darcy Miller at darcy.miller@omeresa.net.
Tuesday, February 26, 2013
Tuesday
Not whole lot of new information to present today. The D10 fluid overnight helped stabilize Addy's glucose so that is good. We are also allowed to give her baby food again. Starting tomorrow, they are going to decrease the medicine she was put on for the fluid in her belly because her stomach is back down to her normal size and it isn't hard anymore.
Addy has the nursing staff wrapped around her finger! Last night she didn't really want to sleep so the nurse asked Pat if she could take her for a walk. She ended up spending quite a bit of time at the nurses' station. Then today when Pat and I went to get lunch Addy was crying so our nurse took her out to show to everyone. The nurse told us she just watched everyone and was very interested in what everyone had. She is quite curious!
We also took Addy down to the playroom today so she could get out of the room a little bit. It is nice because every wing has a playroom for the kids. We didn't stay for too awful long because she got tired and was ready for her afternoon nap, but it was nice to get her out of the room for a little while.
When we came back from lunch, the transplant surgeons were in the room. There are quite a few here at the hospital and the doctor on call we had never met so he came to talk to us. He told us a lot of what we already knew, he can't predict when a liver will become available, Addy is high on the list, and it is very frustrating to wait. He did talk to us about a domino transplant (Here is an article about the first one they did). For a Cliff Notes version, what they would do is someone with the disease called Maple Syrup Urine Disease (MSUD) would get a new liver and then Addy would receive the MSUD liver. The MSUD would not get transferred to Addy.
The infectious disease doctor was just in as well and he says there is no reason, that he can tell, that she can't get the transplant. The reason he had to come was because of her rhinovirus. With the transplant and the anti-rejection medication, Addy's immune system will be very low after the surgery. If she were to have the transplant and have a virus, that could cause extra complications. However now that the rhinovirus is gone, he thinks it should be ok.
Thank you so much for all the thoughts, prayers and support! We can't believe how many of you are reading the blog and we are glad that we can keep you all informed. Please keep the prayers coming and hopefully we will get good news soon!
Addy has the nursing staff wrapped around her finger! Last night she didn't really want to sleep so the nurse asked Pat if she could take her for a walk. She ended up spending quite a bit of time at the nurses' station. Then today when Pat and I went to get lunch Addy was crying so our nurse took her out to show to everyone. The nurse told us she just watched everyone and was very interested in what everyone had. She is quite curious!
We also took Addy down to the playroom today so she could get out of the room a little bit. It is nice because every wing has a playroom for the kids. We didn't stay for too awful long because she got tired and was ready for her afternoon nap, but it was nice to get her out of the room for a little while.
When we came back from lunch, the transplant surgeons were in the room. There are quite a few here at the hospital and the doctor on call we had never met so he came to talk to us. He told us a lot of what we already knew, he can't predict when a liver will become available, Addy is high on the list, and it is very frustrating to wait. He did talk to us about a domino transplant (Here is an article about the first one they did). For a Cliff Notes version, what they would do is someone with the disease called Maple Syrup Urine Disease (MSUD) would get a new liver and then Addy would receive the MSUD liver. The MSUD would not get transferred to Addy.
The infectious disease doctor was just in as well and he says there is no reason, that he can tell, that she can't get the transplant. The reason he had to come was because of her rhinovirus. With the transplant and the anti-rejection medication, Addy's immune system will be very low after the surgery. If she were to have the transplant and have a virus, that could cause extra complications. However now that the rhinovirus is gone, he thinks it should be ok.
Thank you so much for all the thoughts, prayers and support! We can't believe how many of you are reading the blog and we are glad that we can keep you all informed. Please keep the prayers coming and hopefully we will get good news soon!
Monday, February 25, 2013
Monday
The GI doctors came in today and said that Addy's bilirubin has gone up and is now at 29. Her INR is staying steady and is at 7.5 but that is still very high. Her blood sugar is also dropping overnight even when we are feeding her every three hours, so tonight they will give her D 10 through her IV to help that. They scored her again on UNOS and her score is up to 54. Our transplant coordinator said that is very high and the phone should ring soon with a donor. However because there are no gurantees, they suggested we start seeing if anyone is interested in being a live donor. We realize that we have a lot of people willing to donate but we hate to ask anyone to go through it. In others minds, it may not seem like a big favor, but to us it is. We appreciate all of the offers but we are having a hard time with it. Everyone has other people depending on them and we don't want to compromise that or take them away from their families. We hope everyone understands that. Our transplant coordinator has given us the number for the live donor coordinator for people to call and get the process underway. It would start with a blood draw to make sure the blood type matches. Addy is O, so either O+ or O- will work, or if you have A there is something called A2 (what they tested Pat and I for) that will also work. If the blood type matches, the next thing would be a 2 1/2 - 3 day evaluation and more testing here in Pittsburgh. Another stipulation is the donor cannot be over 55 years old.
On top of all this as well Pat woke up this morning with extreme back pain. Two weeks ago he had this as well and we went to the emergency room and found he had a kidney stone. He never thought he passed it but the pain subsided so he thought maybe it had gotten small enough, he didn't realize it was passed. That wasn't the case. After getting sick from the pain, he drove himself to the hospital where they confirmed he still had the kidney stone. They pumped him full of IV fluids until it was in his bladder. They sent him back with pain medicine and hopefully it will pass and he will feel better.
On top of all this as well Pat woke up this morning with extreme back pain. Two weeks ago he had this as well and we went to the emergency room and found he had a kidney stone. He never thought he passed it but the pain subsided so he thought maybe it had gotten small enough, he didn't realize it was passed. That wasn't the case. After getting sick from the pain, he drove himself to the hospital where they confirmed he still had the kidney stone. They pumped him full of IV fluids until it was in his bladder. They sent him back with pain medicine and hopefully it will pass and he will feel better.
Sunday, February 24, 2013
Morning Update
We just met with the GI doctors this morning. Dr. Schieder (hepatology doctor) doesn't feel safe sending Addy home with such a high INR. Her number has gone down a little-to7.6- but that is still not good.
Today she will need to get a blood transfusion because they have taken so much blood for all of her tests. She is going to get 10/ kilo over 4 hours. After tomorrow morning, they won't draw blood everyday. They also agreed to not do as many glucose tests since her numbers have been pretty steady.
She is almost completely off the IV fluids. She is only getting 5 cc's an hour and that is just to keep the PICC line open since she is getting medicine every 6 hours. The doctor thought we could decrease her Albumin since her numbers are getting better. That means she will get that medicine every 12 hours rather than every 6.
In other news, Pat and I visited the library yesterday. It was a pretty nice library and had movies as well. The set up in this room makes it a little hard for parents to watch TV do we got a movie to watch on the computer. I had already started Jodi Picoult's Between the Lines so I didn't get a new book, but found plenty I will check out if we are here longer. Pat decided to start the Hunger Game series. Bob and Denise (Pat's parents) came to visit but Denise wasn't able to come back and see Addy since she is still getting over a sinus infection. The doctors don't want anyone with cold like symptoms around Addy right now. Darcy and Chad also came and visited for a little bit.
* UPDATE * Our nurse just came in and said Addy's respiratory panel came back and it was negative so that means no more rhinovirus and we can take her to the playroom so she can move around a little bit!
Today she will need to get a blood transfusion because they have taken so much blood for all of her tests. She is going to get 10/ kilo over 4 hours. After tomorrow morning, they won't draw blood everyday. They also agreed to not do as many glucose tests since her numbers have been pretty steady.
She is almost completely off the IV fluids. She is only getting 5 cc's an hour and that is just to keep the PICC line open since she is getting medicine every 6 hours. The doctor thought we could decrease her Albumin since her numbers are getting better. That means she will get that medicine every 12 hours rather than every 6.
In other news, Pat and I visited the library yesterday. It was a pretty nice library and had movies as well. The set up in this room makes it a little hard for parents to watch TV do we got a movie to watch on the computer. I had already started Jodi Picoult's Between the Lines so I didn't get a new book, but found plenty I will check out if we are here longer. Pat decided to start the Hunger Game series. Bob and Denise (Pat's parents) came to visit but Denise wasn't able to come back and see Addy since she is still getting over a sinus infection. The doctors don't want anyone with cold like symptoms around Addy right now. Darcy and Chad also came and visited for a little bit.
* UPDATE * Our nurse just came in and said Addy's respiratory panel came back and it was negative so that means no more rhinovirus and we can take her to the playroom so she can move around a little bit!
Saturday, February 23, 2013
A little good with the bad
Let's start with the bad news...
Last night our nurse woke Pat and I up to let us know they wanted to do an x-ray of Addy's chest. Her heart rhythms were showing PVC's and they were worried this was caused by the PICC line that was put in. When the doctors came in today they believe it is just because the PICC line is resting on the wrong area so the IV team will be here later to pull it out just a little and see if that resolves the problem.When the attending doctor, Dr. Kahn (our third Dr. Kahn along our journey) came in for the morning report she told us that Addy's INR (blood clotting) score was up to 8. It had been 7 when we first arrived but then dropped down to 6 yesterday. A normal INR is 0.9-1.3.
Another concern had been her glucose. It was extremely low when we got here (around the 20's) so they have been giving her glucose every 4 hours. This morning it was 80, which is a pretty good level.
There is still some ammonia in her body but the doctors think that is just from her previous GI bleed she had. They are going to put her on Lactulose to help that.
The biggest concern is getting her over the rhinovirus. If a liver would become available, it is a major risk to do the surgery while she has the infection. The anti-rejection drugs that she would be on would cause her immune system to go way down so any infection is detrimental to her.
On to the good news....
They have finally agreed to let her eat! Pat was giving Addy some Pedialite when the doctor was in and she watched how mad Addy got when she was done. She agreed that if Addy kept down the three ounces she took in the morning, the next time she got hungry she could have Pergestamil. So far that has gone really well. She is only taking 4 ounces at a time for now and they have decreased her IV fluid to almost nothing.Some more good news was that the blood cultures they took yesterday haven't shown anything, so while the bacterial infection may not be completely gone, they are on the right track. We are still waiting on the nasal swab they took to check for the rhinovirus.
We also found out yesterday that Pat and I could be donors for Addy. There is a blood type called A2, which most people don't know because it takes a special screening to find it. Pat and I both got tested yesterday but have not heard the results yet.
Per some requests here are some pictures of Addy from today.
Her PICC line
Cuddling with Piglet
Piglet has an IV just like her
Her favorite sleeping position
Friday, February 22, 2013
Fever
On February 6th I took Addy for her bi-weekly check up at Columbus. She had started having a runny nose the weekend before and Wednesday morning developed a fever. When we got to Columbus she was up to 101 degrees. After seeing Dr. Kahn and Dr. Potter, they thought it would be best if they admitted Addy so they could determine what was causing the fever. They gave Addy a dose of Motrin to help with the fever and by the time we were in our room, her fever was gone. They still ran blood tests and we had to wait 24 hours for the blood cultures to grow something. They found that it was rhinovirus, the common cold. Since it is a virus, there was nothing to do for it other than let it run its course. The good news was we only had to stay in the hospital one night.
She continued to have the cold symptoms for two weeks and then a little a week over on the 16th, she started a fever. The hospital doesn't consider it a fever until it reaches 100.4 and she was only at 99. She also had teeth coming in so we just thought that was the culprit. Monday the 18th though Addy ran a fever throughout the night and at one time it reached 102. After talking to Dr. Kahn, she asked us to come to the ER at Children's. At 4:00 we left for the hospital. They drew blood cultures right away and then decided to admit us once again. They went ahead and put her on antibiotics in case it was a bacterial infection. I headed home Monday night so that I could go to work and Pat and Addy stayed at the hospital. It was the first night I had ever spent a night away from Addy and I was heartbroken, but I knew Pat would take good care of her.
Wednesday they did a CT scan of her stomach because it had become very hard. It showed that there was fluid in her belly and also her intestinal walls were swollen. They stopped feeding her and she was only hooked up to IV fluid. They hoped this would help push out the fluid quickly.
When Addy was not responding to what Columbus was trying, they transported her to Pittsburgh by ambulance Thursday night. She was not a happy camper because she was so hungry. Friday morning the doctors came in to talk to us and wanted to do an ultrasound of her abdomen and also put in a PICC line so that her antibiotics and blood draws could be done through that rather than her hand IV's.
She continued to have the cold symptoms for two weeks and then a little a week over on the 16th, she started a fever. The hospital doesn't consider it a fever until it reaches 100.4 and she was only at 99. She also had teeth coming in so we just thought that was the culprit. Monday the 18th though Addy ran a fever throughout the night and at one time it reached 102. After talking to Dr. Kahn, she asked us to come to the ER at Children's. At 4:00 we left for the hospital. They drew blood cultures right away and then decided to admit us once again. They went ahead and put her on antibiotics in case it was a bacterial infection. I headed home Monday night so that I could go to work and Pat and Addy stayed at the hospital. It was the first night I had ever spent a night away from Addy and I was heartbroken, but I knew Pat would take good care of her.
Wednesday they did a CT scan of her stomach because it had become very hard. It showed that there was fluid in her belly and also her intestinal walls were swollen. They stopped feeding her and she was only hooked up to IV fluid. They hoped this would help push out the fluid quickly.
When Addy was not responding to what Columbus was trying, they transported her to Pittsburgh by ambulance Thursday night. She was not a happy camper because she was so hungry. Friday morning the doctors came in to talk to us and wanted to do an ultrasound of her abdomen and also put in a PICC line so that her antibiotics and blood draws could be done through that rather than her hand IV's.
Back to Where it All Started
I am starting this blog for a couple reasons. First, we are hoping this is a way that everyone can stay informed. We have been absolutely overwhelmed with the love, support and concern everyone has shown through out Addy's life. She is one blessed little girl! Second, this will be a way for us to hopefully remember everything. Pat and I have learned more medical jargon than either of us ever cared to learn but there are still some things the doctors say that we aren't sure about, so it is nice to have it all recorded. Third, we hope that this may help another family going through this someday. When we first found out Addy had to have a transplant, a friend that I went to high school with send me a link to a blog or someone she knew. While it was a little scary to read, it was also comforting to know what to expect.
For those that don't know all that Addy has gone through, I am going to give you a Cliff Notes version (or what we have to tell the doctors every time we have been admitted). I had a pretty easy pregnancy. I wasn't sick very much and wasn't overly uncomfortable. Delivery was normal and pretty fast (thankfully!). Her Apgar score was normal and her bilirubin was a little high, but nothing to be concerned about. We got to go home after two nights in the hospital. At her one week appointment her bilirubin still was a little elevated, but the doctors didn't feel that she needed the photo-therapy. We were told since she was nursing, she may be jaundiced a little more than a formula fed baby. At seven weeks I took her back to the doctor, concerned about her color. He ordered blood work and we went home. Soon I got a call from Pat that scared me more than I had ever been scared before. He told me the doctor called him and we needed to get to Children's as soon as we could. When we got there we waited in the ER as they decided what needed to be done. Her veins were so small that they had a hard time getting an IV in and had to poke her three times before they finally called someone else, who was able to get it on the first try. It was awful to watch her go through that. Next they wanted an ultrasound of her stomach. They did one but said it wasn't clear enough because she had just eaten. We had to wait until she hadn't eaten for four hours before we could do another one. If you know Addy, you know this wasn't easy. She was furious! Pat and I took turns walking around this tiny room trying to console her. Finally she fell asleep in Pat's arms. When we went to get the ultrasound Addy squirmed all over the table and just screamed, she was so hungry. This of course made the whole process a lot longer, but they finally got what they needed. After that we went back to the ER room and were told shortly after that we were going to be admitted. From the ultrasound and the blood work there was something wrong with her liver but they needed to do more testing.
The biggest concern that the doctors had at the beginning was that Addy had biliary atresia. Pretty much this is a blockage or disconnect from the liver to other organs. To check for this we had to do a hydascan but she had to be on special medicine for five days. They also started her on other medicine, which she is still currently on. She take Ursidiol, to help with the bile caused by the jaundice, AquaADEKS, a multi-vitamin, extra Vitamin D, and extra Vitamin K. They also started her on Pergestimil formula to supplement with nursing. Pat went home after the 4th day to go back to work and on the 5th day we did the hydascan and found it wasn't biliary atresia. However, they didn't know what it was. They allowed us to go home and we scheduled follow up appointments.
A little over a month later at an appointment, the doctors were concerned that she was not gaining any weight. They hospitalized us again so they could monitor her feeding and weight gain. They adjusted her calorie intake with the formula and told me I could no longer nurse. I was absolutely heart broken and had a really hard time with that. Again after 5 days, they were comfortable releasing us and letting us go home.
Another month passed and we were back at the doctor's office. They now wanted to do a liver biopsy because they told us that would be the most sure fire way to diagnose Addy. The doctors also wanted to do it now because, at the time, there was a world class hematologist (blood doctor) on service at the hospital. This was such a big deal because Addy's blood clotting numbers were really high, which means she was more prone to bleeding and he could monitor her to make sure she didn't bleed during or after the procedure. We decided to go ahead with it even though we had put it off because we didn't want her to have surgery if there were other ways to figuring out what was wrong. We were in the hospital 2 days before the actual biospy because the hematologist wanted to give her Vitamin K through an IV before the procedure to help with the bleeding. Finally they did the liver biopsy. She had to be put under so that was unnerving for Pat and I. When she was in the operating room, Pat and I spent our time playing Sonic the Hedgehog on the waiting room's Game Cube. The procedure didn't take longer than 20 minutes and when we went back to see Addy she was smiling. Once the doctors were happy with her levels we were released which was a day or two later.
Two week later we went back to the clinic to find out the results of the biopsy. We met with Dr. Potter who is the liver specialist at Children's in Columbus. She told us that there was scarred tissue in her liver but they didn't know why or what caused it, but it looked like she would need a transplant. I was shocked and didn't know what to say or do. Thankfully my dad had gone to the appointment with me because Pat had to work. After the initial shock wore off we realized that whatever we needed to do to get Addy healthy was what we were going to do.
To start the transplant process we were sent to Children's Hospital in Pittsburgh. The screening process was a three day long process where we met with a variety of doctors and other specialists. The worst of these was an education session where we were told all that Addy would go through if she had the transplant. It was terrifying. Looking back it is nice to know everything, but at the time we were both completely against doing the transplant. We didn't stay in the hospital for the screening process so we were able to explore Pittsburgh a little. While the traffic makes no sense, we found plenty to take up our time. Once we were done, we were told the whole team would meet on Friday and we may know something right after that or with it being right before the holidays it may not be till after the New Year.
We didn't have to wait long because they called us that Friday. Dr. Schnieder, the hepatologist at Pittsburgh, called while I was at our school Christmas Dinner. He told me that she was a candidate for transplant and that we should consider putting her on the UNOS (United Network for Organ Sharing) list. We would have her blood drawn periodically and that would determine her PELD (Pediatric End Stage Liver Disease) score.
This was all very overwhelming but like I have said, if it wasn't for the amazing support from our family, friends, co-workers and everyone else we would never have been able to make it through.
For those that don't know all that Addy has gone through, I am going to give you a Cliff Notes version (or what we have to tell the doctors every time we have been admitted). I had a pretty easy pregnancy. I wasn't sick very much and wasn't overly uncomfortable. Delivery was normal and pretty fast (thankfully!). Her Apgar score was normal and her bilirubin was a little high, but nothing to be concerned about. We got to go home after two nights in the hospital. At her one week appointment her bilirubin still was a little elevated, but the doctors didn't feel that she needed the photo-therapy. We were told since she was nursing, she may be jaundiced a little more than a formula fed baby. At seven weeks I took her back to the doctor, concerned about her color. He ordered blood work and we went home. Soon I got a call from Pat that scared me more than I had ever been scared before. He told me the doctor called him and we needed to get to Children's as soon as we could. When we got there we waited in the ER as they decided what needed to be done. Her veins were so small that they had a hard time getting an IV in and had to poke her three times before they finally called someone else, who was able to get it on the first try. It was awful to watch her go through that. Next they wanted an ultrasound of her stomach. They did one but said it wasn't clear enough because she had just eaten. We had to wait until she hadn't eaten for four hours before we could do another one. If you know Addy, you know this wasn't easy. She was furious! Pat and I took turns walking around this tiny room trying to console her. Finally she fell asleep in Pat's arms. When we went to get the ultrasound Addy squirmed all over the table and just screamed, she was so hungry. This of course made the whole process a lot longer, but they finally got what they needed. After that we went back to the ER room and were told shortly after that we were going to be admitted. From the ultrasound and the blood work there was something wrong with her liver but they needed to do more testing.
The biggest concern that the doctors had at the beginning was that Addy had biliary atresia. Pretty much this is a blockage or disconnect from the liver to other organs. To check for this we had to do a hydascan but she had to be on special medicine for five days. They also started her on other medicine, which she is still currently on. She take Ursidiol, to help with the bile caused by the jaundice, AquaADEKS, a multi-vitamin, extra Vitamin D, and extra Vitamin K. They also started her on Pergestimil formula to supplement with nursing. Pat went home after the 4th day to go back to work and on the 5th day we did the hydascan and found it wasn't biliary atresia. However, they didn't know what it was. They allowed us to go home and we scheduled follow up appointments.
A little over a month later at an appointment, the doctors were concerned that she was not gaining any weight. They hospitalized us again so they could monitor her feeding and weight gain. They adjusted her calorie intake with the formula and told me I could no longer nurse. I was absolutely heart broken and had a really hard time with that. Again after 5 days, they were comfortable releasing us and letting us go home.
Another month passed and we were back at the doctor's office. They now wanted to do a liver biopsy because they told us that would be the most sure fire way to diagnose Addy. The doctors also wanted to do it now because, at the time, there was a world class hematologist (blood doctor) on service at the hospital. This was such a big deal because Addy's blood clotting numbers were really high, which means she was more prone to bleeding and he could monitor her to make sure she didn't bleed during or after the procedure. We decided to go ahead with it even though we had put it off because we didn't want her to have surgery if there were other ways to figuring out what was wrong. We were in the hospital 2 days before the actual biospy because the hematologist wanted to give her Vitamin K through an IV before the procedure to help with the bleeding. Finally they did the liver biopsy. She had to be put under so that was unnerving for Pat and I. When she was in the operating room, Pat and I spent our time playing Sonic the Hedgehog on the waiting room's Game Cube. The procedure didn't take longer than 20 minutes and when we went back to see Addy she was smiling. Once the doctors were happy with her levels we were released which was a day or two later.
Two week later we went back to the clinic to find out the results of the biopsy. We met with Dr. Potter who is the liver specialist at Children's in Columbus. She told us that there was scarred tissue in her liver but they didn't know why or what caused it, but it looked like she would need a transplant. I was shocked and didn't know what to say or do. Thankfully my dad had gone to the appointment with me because Pat had to work. After the initial shock wore off we realized that whatever we needed to do to get Addy healthy was what we were going to do.
To start the transplant process we were sent to Children's Hospital in Pittsburgh. The screening process was a three day long process where we met with a variety of doctors and other specialists. The worst of these was an education session where we were told all that Addy would go through if she had the transplant. It was terrifying. Looking back it is nice to know everything, but at the time we were both completely against doing the transplant. We didn't stay in the hospital for the screening process so we were able to explore Pittsburgh a little. While the traffic makes no sense, we found plenty to take up our time. Once we were done, we were told the whole team would meet on Friday and we may know something right after that or with it being right before the holidays it may not be till after the New Year.
We didn't have to wait long because they called us that Friday. Dr. Schnieder, the hepatologist at Pittsburgh, called while I was at our school Christmas Dinner. He told me that she was a candidate for transplant and that we should consider putting her on the UNOS (United Network for Organ Sharing) list. We would have her blood drawn periodically and that would determine her PELD (Pediatric End Stage Liver Disease) score.
This was all very overwhelming but like I have said, if it wasn't for the amazing support from our family, friends, co-workers and everyone else we would never have been able to make it through.
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