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
Subscribe to:
Posts (Atom)