I know I have mentioned Baby Paityn in pervious posts. She is a little gal from Olivia's Daycare with a SERIOUS liver disease. Basically her liver will not filter out the bad stuff, so her skin is very yellow, her eyes even yellower & she has been living between the Ronald McDonald house and Children's Hospital in Minneapolis for MONTHS. Her parents have both lost or quit their jobs due to her illness & last week they closed on their home in Fargo. So when they get out, they will be homeless & jobless!
The transplant team told the family that Memorial Weekend is one of the top weekends for transplants because of all the accidents & deaths around the country. So keep your family safe this weekend. It's scary to think of this fact for the rest of us & pray for a new liver for Paityn at the same time. She should have had the transplant months ago but she continues to fight infections & is not big enough according to the docs. They say it will be way to hard to find a liver 'her size' because she is so tiny (due to stunted growth because her body doesn't take in the nourishment she needs).
I wanted to share their last couple of updates with you. Please PLEASE keep this baby in your prayers. She needs a fighting chance, and the poor thing has been fighting so hard. We are sending off another shipment of toys to her today. I can't imagine my baby being cooped up with the same toys in a small room, so daycare and some people we know try to rally together toys & fun things for them to play with, and donate to the Ronald McDonald House when they are done.
Anyway...here are the posts from the past few days....
Sunday, May 17, 2009 11:45 AM, CDT
Well our hospital stay is not going at all like we thought it would. Paityn was doing so good the first night there that we thought we would be out in 48 hours when her blood cultures came back. However, that is not at all what happened. Yesterday morning when mommy showed up (mommy and daddy switch off nights at the hospital since she is such a bad sleeper) she found daddy holding Paityn and she was just in her diaper. Then was shocked and terrified at what she saw. When I looked at her bed it was covered in blood. Paityn threw up blood everywhere. It was the scariest thing I have ever seen. With Paityns liver failing it can cause varices in her esophagus which can break open and bleed into her stomach which is what the doctors think is happening. We got transferred over to the PICU yesterday and she got a blood transfusion and put on a med that will hopefully stop the bleeding. The doctors are really hoping this med does the trick because otherwise they have to scope her and they don't like to do that on kids under 1 yrs of age and they think she is too small for the procedure. She hasn't thrown up again but she has had some bloody stools so that is not a good sign. Lets just keep our fingers crossed that the bleeding stops and we get to get out of the ICU tomorrow. Thank you all so much for your continued love and support.
Well our hospital stay is not going at all like we thought it would. Paityn was doing so good the first night there that we thought we would be out in 48 hours when her blood cultures came back. However, that is not at all what happened. Yesterday morning when mommy showed up (mommy and daddy switch off nights at the hospital since she is such a bad sleeper) she found daddy holding Paityn and she was just in her diaper. Then was shocked and terrified at what she saw. When I looked at her bed it was covered in blood. Paityn threw up blood everywhere. It was the scariest thing I have ever seen. With Paityns liver failing it can cause varices in her esophagus which can break open and bleed into her stomach which is what the doctors think is happening. We got transferred over to the PICU yesterday and she got a blood transfusion and put on a med that will hopefully stop the bleeding. The doctors are really hoping this med does the trick because otherwise they have to scope her and they don't like to do that on kids under 1 yrs of age and they think she is too small for the procedure. She hasn't thrown up again but she has had some bloody stools so that is not a good sign. Lets just keep our fingers crossed that the bleeding stops and we get to get out of the ICU tomorrow. Thank you all so much for your continued love and support.
Tuesday, May 19, 2009 9:26 PM, CDT
We got out of the PICU yesterday and are back in 5B. Paityn is doing great! It looks like her bleeding has stopped. They started her NJ tube feedings back up today and she seems much more comfortable with her belly full. The doctors think that she is stable and as long as her night goes good that the will release us back over to the RMH tomorrow. We know that it is only a matter of time until she starts bleeding again we are just hoping and praying that we get the call before that happens. In fact Jason, Paityn, and I have all done a liver dance today in hopes that we will get the call!! You may all feel free to make up your own liver dance and do it for Paityn. Thank you all again so much for all of your kind words, thoughts, and prayers. You have no idea how much you all mean to us.
We got out of the PICU yesterday and are back in 5B. Paityn is doing great! It looks like her bleeding has stopped. They started her NJ tube feedings back up today and she seems much more comfortable with her belly full. The doctors think that she is stable and as long as her night goes good that the will release us back over to the RMH tomorrow. We know that it is only a matter of time until she starts bleeding again we are just hoping and praying that we get the call before that happens. In fact Jason, Paityn, and I have all done a liver dance today in hopes that we will get the call!! You may all feel free to make up your own liver dance and do it for Paityn. Thank you all again so much for all of your kind words, thoughts, and prayers. You have no idea how much you all mean to us.
Wednesday, May 20, 2009 5:10 PM, CDT
Looks like I spoke to soon last night. Paityn had another throwing up blood episode this morning an hour before we were going to be discharged. So it looks like she is still bleeding somewhere. There aren't too many options for us to prevent the bleeding and none of them are proven to work. Paityn is going to be scoped tomorrow afternoon to try and find out where she is bleeding from. She could be bleeding from her esophagus, her stomach, her intestines, or it could even have a bleeding ulcer. So we won't know what to do until tomorrow. Paityn has been surprisingly in a very good mood today despite what has happened. We are having a very hard time getting her to sit still in our little room. She also turned 10 months old today which is turning out to be very fun age. She truly is an amazing little girl and we are so proud to be her parents. Keep fighting my beautiful baby. We are so happy that you all have been supporting the liver dance. Keep on dancing your little hearts out. Its going to work!!! Also, thank you all so much for all of your continued love and support. You all are so amazing and we are blessed to have you in our lives. Looks like I spoke to soon last night. Paityn had another throwing up blood episode this morning an hour before we were going to be discharged. So it looks like she is still bleeding somewhere. There aren't too many options for us to prevent the bleeding and none of them are proven to work. Paityn is going to be scoped tomorrow afternoon to try and find out where she is bleeding from. She could be bleeding from her esophagus, her stomach, her intestines, or it could even have a bleeding ulcer. So we won't know what to do until tomorrow. Paityn has been surprisingly in a very good mood today despite what has happened. We are having a very hard time getting her to sit still in our little room. She also turned 10 months old today which is turning out to be very fun age. She truly is an amazing little girl and we are so proud to be her parents. Keep fighting my beautiful baby. We are so happy that you all have been supporting the liver dance. Keep on dancing your little hearts out. Its going to work!!! Also, thank you all so much for all of your continued love and support. You all are so amazing and we are blessed to have you in our lives.
1 comment:
dancing my pants off.
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