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One of the things I found when having a child in the NICU is you have Hope. Hope is really the only thing you have to go on. You hope that everything works out and that your baby comes home. And for some like me that hope can get ripped right from you and it's hard to be hopeful after that. I have also said before that I'm not big into prayer anymore since I'm not so sure what prayer gets you after what happened with Scott. It's been a journey but my husband and I have reached a good place and have actually been happy lately and looking forward to things.
Well my mom has health issues and has had them for a good many years. She has Hepatitis C which she had been being treated for over the years. This has caused some other health issues and is also causing her liver to not function properly. We found out 2 years ago december of 2012 that they were going to put her on the liver transplant list. At the time there was no dire need for her to get a new liver but they wanted her on the list so when that day comes the process is done. ( It is quite a process you go through to be put on the list). She has been stable the past two years and then this past winter she has been having some fluid build up. It got so bad that this past Monday she went to the Er with severe back pain. this resulted in her getting transferred to John Hopkins were her team of doctors are that have been seeing her about her disease.
We found out today that her kidneys are not functioning as they should and that it cause her meld score to go up. ( the liver rating) We found out the the liver and kidneys work closely together and that one can affect the other. Therefore my mom is starting a heavy dose of kidney medication tomorrow to try and get her kidneys to function better and get her meld score to go down. if not...well she could be moved higher on the transplant list. We all knew this day was coming one day but it's still hard to hear. It's hard to hope really hard that things will work out and that if she ends up getting the transplant that it will take and she will do well. It's hard when you hoped so much, prayed so much just a short time ago and the hope was taken away.
My mom is such a great person. Always positive and upbeat. Never any negative comments about her health. She has always dealt with it and found a way to continue enjoying life. She has a strong faith. I always said that I hope I could be half as strong as her if something ever bad happened. I found out that I do possess that strength. I hate seeing her looking so frail in the hospital and trying so hard to keep up her strength.
I also worry that if something does happen that c will forget her. They are so close but he is so young and I want him to have those good grandma memories all of us deserve to have. I hate that I very well may be explaining to him about liver transplants. he already has has so much thrown at him and we have had so much to explain to him. I hate that he can't visit her in the hospital because he misses her and she misses him.
Just a pity party for one tonight and trying to find away to have a little hope that maybe everything will work out for the good this time.
I'm sorry that all this is happening. I'm hoping with you that things work out.
I am thinking of your family. Especially you and your mom. I know from previous posts that your parents have been very supportive for all of you after Scott's passing and I am sure that the fear of losing her is overwhelming. I will keep all of you in my thoughts and prayers.
March of Dimes fights for the health of all moms and babies. We're advocating for policies to protect them. We're working to radically improve the health care they receive. We're pioneering research to find solutions. We're empowering families with the knowledge and tools to have healthier pregnancies. By uniting communities, we're building a brighter future for us all.
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