Scared

I am feeling very overwhelmed right now.  A lot of changes have happened in the last few months that have me feeling very overwhelmed.  Rosie was diagnosed with antibody mediated rejection in late June.  She was treated in St Louis for almost 3 weeks. The treatment wiped out all her her b-cells and antibodies.  My husband took a job transfer to New Mexico in July. He moved, we stayed behind to sell the house. Rosie and I were home for a week before he left.  A week later I was taking Rosie to the ER at Riley where she was admitted to the PICU for pneumonia. We were there for three days before she had to be transferred to St Louis Children’s Hospital. The nurses on the pulmonary floor at Riley are not allowed to give Rosie her anti-rejection medication.  I know! It’s a really dumb reason.  Rosie and I have been home for 2 weeks but she is still not feeling well.  I’m so frustrated. I didn’t expect her to still be so ill.  We are used to being in the hospital for a few weeks and then coming home and going back to normal.  That has not been the case this time.  All she does is sleep, watch TV and watch videos on her iPad.  She hasn’t felt well enough to go to voice lesson or dance or sing.  She was so looking forward to being in  the Lion King Jr musical but hasn’t felt well enough to go to rehearsals. It’s breaking my heart to see her this way.  She had life given to her and was able to live like she had never lived before.  Now that has been taken away from her and I don’t know if or when it will be given back.  Is the pneumonia back? How will they treat her if it is?  We will have to go back to St Louis for treatment, but there is only one antibiotic that will treat her bacteria and it is really hard on her kidneys. She is scared and I am scared.

I feel alone.  People ask what they can do to help and I don’t know what to tell them. I don’t know how they can help so I just ask them to pray. I feel like I have a huge list of things to do but I can’t really get them done because I need to take care of Rosie. I feel pressured to get the house in order and ready to sell (which I’m not emotionally ready to do but maybe I’ll be closer when I get the projects done). I want to get school work set up and ready for Rosie to start in September. I finally have the hang of mowing the grass but the weed eater won’t work right.  This morning I actually used a pair of scissors to weed eat! I am thankful for the help my son has been.  And I’m worried about how he is handling all of this. We are all still dealing with the loss of Melanie. There is no way we can handle loosing Rosie too and I know that is in the back of all our minds. We all knew transplant wasn’t a cure but I don’t think any of us thought she would struggle this soon. It’s so hard to see her feeling so badly.  I just want her to feel well again and go back to being healthy and living her life again.

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