The idea of Hospice

I’m an emotional basket case and have been unable to write. I go through periods of crying and laughing and now want to be able to release my emotions tonight. Last week, Sleeping Beauty Maddie continued to sleep peacefully, and then on Wednesday-Friday, she had a fever and lots of congestion.  I gave her Motrin so she was not in pain and not fussing so she ended up being seizure free (at least clinically) on Thursday and Friday and was the most alert out of all the days she has been at home since leaving the hospital. We are blessed by her beauty and lots of kisses and smiles from our girl. On Saturday morning, she had a seizure that wiped her out until early this evening. Maddie has been really fussy and cries a lot when we try to wake her up to change her diaper or get her dressed. She loves to sleep. Most likely it may be a combination of her seizure meds, her diet or subclinical seizures that we can’t see.  I maybe repeating myself but this is what our life consist of on most days. Sometimes, I am extremely frustrated with others around me that think that since Maddie got to come home from the hospital that it means that she is getting better. What some may not realize is that the hospital could no longer treat our daughter effectively.  Our child has a terminal illness including severe seizures of unknown causes/etiology and there’s not much that any humans can really do to treat or cure her. She most likely is progressively getting worst. Her breathing is getting gurglier (issues that she never had before), she appears to being having new issues and she’s having more bad days than good days.  Her body appears to be slowing down. Her PCP recommended Hospice (not to say that she will die soon but so that we have better options to treat her, manage her care and more resources). We met with Hospice early this afternoon and per the RN case manager that came, she believes that Hospice would benefit Maddie and our family greatly because of her seemingly progressing conditions. It’s hard to take…knowing that Maddie is probably getting worst and that her quality of life is not as good as from before. She sleeps most of the days and physically is unable to hold her head and self up. Her head flops all over the place. I hate to see her in pain and with tears flowing down her sweet little face. We are not giving up on our faith and hope but are trying give her the best life possibly which will mean being able to let her go when God is ready to take her to be with him in heaven. The children’s hospice is a home away from home. It was just built in March of 2010 and the mission statement is: To provide respite and palliative care to children with life-threatening conditions and, as needed, end-of-life care. “Pediatric palliative care is both a philosophy of care and an organized program… focused on enhancing quality of life for child and family, minimizing suffering, optimizing functions, and providing opportunities for personal growth.” We could already tell how compassionate and loving the RN that came to the house today. Maddie will have access to 24 hours nursing visits if we are in need of anything with her nursing concerns. We just need to make a phone call and a nurse will come. The doctors also will do house calls. She also can be treated at the Children’s Hospice facility (which is a home-away from home instead of a regular hospital.) Hospice will help enable our family to have to the best treatment and pain management of Maddie for as long as God blesses our lives with her. We are going to tour the Hospice House on Sunday afternoon. We have prayed for some answers and God is sending us on this path. Please keep us in your hearts and prayers as we struggle to give our daughter the best of life for however long she is with us. As the Hospice RN said, “It’s not about giving days to life but about giving life to days.” Maddie and our family are so blessed by some encouraging words and love from a friend from GA, MO, and a visit to a sweet 81 year old brother in Christ an hour away from us. The Hospice RN suggested making a bucket list and we are going to have to come up with items for our list. Much love to all of our friends and family whom are reading our blog.