Saturday, November 20, 2010

back in the hospital

We are back in the hospital. At least we made it home for two days before we had to come back. This stay will not be as long as the two month stay we had before and after transplant.
The reason we are back is that Paige was throwing up at home. once we got into the hospital she had fevers of 104.7 degrees f and they did not know what was causing all of the fevers. They gave her three different antibiotic's and took out her pick-line.They think it was an infection somewhere in her body.
Once we get her feeds figured out hopefully we will be able to go home. We have spent every holiday from mothers day until now so I hope we can make it home for Thanksgiving.

Saturday, November 13, 2010

we are home

It has been a long two months....but we are so happy to be home. It was so hard to get her to sleep when we got home. All she wanted to do was look around. Paige feels the best she has ever felt. she does not cry anymore and always has a smile on her face. the only struggle with Paige is getting her to eat. will not eat anything. Her little tummy has been sick for such a long time that it will take about six months for it to get back to normal.But Paige not eating is not a big deal. It will all come back with time. Paige is alive that is all that matters now. I am so glad to be home.

Wednesday, October 27, 2010

Paige has been doing good but has had a few bumps along the way. We have been in the ICU for a 1 1/2 weeks and counting.
Paige looks like a whole new baby.She has pink baby skin and her belly is going down with each day. Her belly is completely closed and now we are waiting for her to get her breathing tube out. The breathing tube has been a struggle to get out with the fluid balance in her belly. These fluids have made her lungs very angry and sick which postponed getting the breathing tube out.
It is crazy to think that before transplant Paige's liver was in failure, her kidneys were failing, her brain waves were slowing, she was throwing up blood and was blood dependent. Now all of that has magically disappeared. Her kidney's are still trying to recover but now life has become a lot less stressful.I feel a weight has been lifted for now. Dr. Book never gave up on Paige and found Paige a liver like she said she would.I owe a lot to Dr Book and her team for saving my baby. I am so grateful that I get to keep Paige. She make life more enjoyable with each day and she has taught me a lot. I look at how strong she is and how much she has endured. Even when Paige was at her worst she would still have a big smile on her face.I cannot imagine how much Paige has pain she has suffered just so I could keep her.I know that the only reason Paige held on so long was she knew how much I needed her.
I love her with all my HEART.

Wednesday, October 20, 2010

paige's new liver!!!!

I am so grateful to the 2 month old donor that gave Paige a second chance at life.I am also grateful to that amazing family that made the choice to give up there child's organs.I will always have a special place in my heart for that selfless family.
The liver was a blessing at a need time. As soon as they connected the liver it intently came to life. Paige's surgery went very well which surprised the surgeons and doctors, because Paige was very sick beforehand.
Each day her color gets better and better. They have not had to give her any blood products of any kind.Her liver is on fire. But we take it a day at a time. I hope and pray that she continues to do well. It is scary to think of what the future holds. For now all things look good.

Sunday, October 17, 2010

Paige got a liver! The liver she is getting is a baby liver of a child that is younger than Paige.I am so thankful to the family that donated. Paige was sick for so long so it will be hard to think of Paige as a healthy baby. It will be a long road for Paige but we are just so happy that there is hope for Paige.

Friday, October 1, 2010

Livers are important

Life at the hospital is crazy. Each day has something new happens. I get so sad seeing Paige get more and more sick. Watching Paige throwing up blood because her clotting factors are not what they use to be. watching Paige have moments were she does not even know who I am. I have been very grateful to have a home at the hospital. I cannot even think about going home. Even if we were sent home we would be back that night or in the morning. It is sad when all of the nurses know who you means you have been in the hospital too many times. I am thankful that all of the nurses love Paige and take great care of her. I also love Dr. Book. Dr. Book is an amazing woman who truly cares about her liver kids. She has taken time to hold Paige in her arms. She is always showing how much she loves Paige and how much she cares. I know that if anyone where to save Paige it would be Book. I hope Dr. Book keeps loving what she is doing and never quits. There are so many kids who could benefit from her care.

Wednesday, September 29, 2010

A long stay at the hospital

Paige came into the hospital on Wednesday which was the day after her check up. When I called Dr. Book I felt like the same crazy mom that called in for my weekly stressed out call. I felt so dumb calling the day after we had our checkup but Paige was not acting like her happy playful self. The nurse called us back and told us to bring her in. As soon as we got to the hospital she crashed. She would not open her eyes even when they caused her pain. she was screaming and arching her back so when Dr. Book saw her she was very worried. we got sent down to the ICU and once we got there Paige was acting like their was nothing wrong.
The next day we were moved to the IMCU for a week long stay on stat 1b. Paige had brain test that show that the toxins in her body were starting to slow her brain waves a problem that of course could be fixed by a liver. Even being on stat 1b we had no offers.
The day before Paige was supposed to be re-certified Dr book told me that for Paige would have to fell a yell test to be back on the stat 1b. Paige must have taken that to heart because the next morning she woke up after 7 hour sleep and was happy for 30 minutes....that was when she crashed again. She was screaming and arching her back. she would not open her eyes even when they caused her pain. she was twitching in her leg and arm that would happen randomly. When she open her eyes there was nothing there but a blank stare. She closed her eyes again and was screaming and arching her back. More blank stares every few minutes.Dr book joked and asked if I hit her with a baseball bat so I could keep her on stat 1b.
It is so hard to see your baby getting so sick but the positive is we have another week on stat 1b. We will not be able to leave the hospital until Paige gets her liver. So the hospital will be my new home for a long time.
Paige is a strong baby that I know I can make it. Keep Paige in your prayers.....pray for a liver for Paige.

Tuesday, September 7, 2010

Paige has been pretty good about staying out of the hospital.she is a very strong baby for what she has had to endure. When we got are first liver offer I felt a weight lifted off of my shoulders and when it did not happen the weight was back. It took two months to get an offer and then when it did not work out I got really scared. Paige is getting so sick so fast and there is nothing I can do.
It makes me so sad to see Paige in so much pain. I wish that I could be the one to take all of the pain. i cannot wait until she can get her liver and get her second chance.

Sunday, September 5, 2010

no liver for paige

Paige got an offer on thursday for a liver. The liver looked great on paper but when they looked at it the liver it was too sick. Paige has stayed out of the hospital but is getting more sick.We hope for a liver to come and save Paiges life.we keep praying that paige will get her second chance.

Monday, August 2, 2010

more hospital stays

Paige is in the hospital again. We came last week with an infection of some kind. Five days later we were back in the hospital. Last week her peld score was 17 five days later it is 26. It is so hard to wait. I can see Paige getting sicker and there is not anything I can do. I think for here on out we will be in the hospital more. I thought I would never get to the point that I would rather be in the hospital than home….but I am there now. It is scary when you wake up to your child struggling to breathe. I hope that we can get offers. No offers yet.

Saturday, July 17, 2010

We had more then 20 people call in to be living donors. I did not think that anyone would want to be a living donor. I am lucky to be blessed with such amazing friends and family. They did not waste any time calling in to donate.
Paige is getting more and more yellow. Her belly looks like a pregnant belly at nine months. I am thinking she will be on a feeding tube pretty soon.
When I think of Paige I am grateful for all of the advances in medicine. If Paige was not born in these times she would not have made it past the age of two. I cannot help being thankful that I still get to have her. I am amazed at how strong she is and how mellow. If i had to go through what she has I would be so grumpy and miserable. Even when she is in pain she still makes time to smile. I hope that we can find a liver that will be the perfect fit, so that she can get better.

Monday, July 12, 2010

Joe is not a match for now. Paige would have to be two to be able to fit his liver. Paige will not be able to make it until two. Now we wait for a deceased liver. The hardest part is the waiting. I know that things will work out. I just hope she can get a liver before she is too sick.

Sunday, June 20, 2010

Paige's doctor told us that she will need a liver transplant in a few months. I am glad that now I know what is happening. now we hope that my husband Joe will be a match so that he can donate. I would donate if I could but they will not let me. Now we wait and hope for the best. doctor book says that Paige will need a transplant in the next seven months.
It has been such a blessing to be out of the hospital for the last month. I always get nervous when we see the doctor, because I am always afraid that we will not allow us to leave.
I am so grateful that Paige has such amazing doctors and that they watch her so close. she is a very special girl. We hope that she gets better soon.

Saturday, May 29, 2010

I just found out a few weeks ago that my daughter has Biliary Atresia. She has had a Kasia procedure done and now we wait to see if the Kasia will work. I think that the hardest part is the waiting. I never know what to expect or if she doing ok.