It is way past time to update the blog. Once again life has gotten in the way and time is passing before I can realize it. When I look back to where we were this time last year, I amazed at how much has changed. This time last year Audrey was being readmitted for the second time in a week for her motility testing. We didn't go home after that testing for 3 long weeks because she had test after test, procedure after procedure and finally surgery and recovery. She had so many procedures in radiology she had actually gone over her maximum radiation allotment by the time we went home. After that she had sepsis after sepsis until her big downfall in February. This year has definitely been an improvement in quality of life. Though from the outside looking in, it may seem that she is doing better health wise, it is really that we have become better at managing her at home. I have become a pro at giving multiple fluid boluses, dextrose infusions, IVIG, and an endless list of IV medications, all to keep her out of the hospital. This plan has worked, she has only had 2 hospital stays for the whole year (knock on a whole forest of wood!!) but it has definitely come with it's consequences.
Audrey is just too complicated for home health. This seems to be a concept that is completely foreign to most people. The general public assumes, the doctor orders nursing care, the nurse shows up, life goes on. This couldn't be farther from the truth for us. Audrey qualifies for 24 hour nursing care. She has all the waivers in place to fund it. But despite 18 months of recruitment and meetings and training 2 RN's myself, ultimately no one was qualified to take care of her. There is a huge discrepancy in RN's who work in the hospital and those who do home care. Not to say there are not a few little gems who have been scooped up like the treasures they are, but on the whole a home health RN does not go to work expecting to manage crashing BP's, hypoglycemia, steroid drips and IV med after IV med. This however, is exactly what Audrey needs. This is what we go through night after night, because of course, night time is the hardest time for her. So her nursing company gave up on her. They weren't willing to fund a RN who could actually take care of her so they discharged her from their service and said "Good luck!" I have tried hard to find someone else. I have called every single nursing agency who will service my area and not a single one is able to provide for her. So thanks to a couple of awesome nurses I work with, I have been able to work a few shifts here and there and take a much needed break from my 24 hour, 7 days a week nursing shift at home. I could debate the unfairness of it all, lobby for better paid nurses and more training for the home, after all with the rising costs of health care more and more, sicker patient swill be transferred to their home, but who has time for all of that?? I can barely manage hour to hour day to day.
Maybe some of you wonder why I do I do all this at home? Why don't I just take her in to the hospital and let them manage her? Last year she spent 72 days inpatient. This year, if I had taken her to the hospital everytime her BP was low or her glucose was wacky, she would not have been home at all. There's not a day that goes by that there isn't something wrong with her that she could be in the hospital for. But why would I do that to her? For some reason Audrey was given to me. After all my training and schooling and experience, I got this amazing, special girl, who I am completely qualified to care for at home. And because of my ability to keep her home she has experienced things this year we never thought possible. Audrey was able to dance. She was in a ballet recital! She has made a best friend. She has found a best friend in our puppy. She spent months this summer getting to know her grandma. She went to "the world" (Sea World) and she was dressed as a princess at Disneyland. She has had more QOL shoved into this year than she has in the past 4, that is why I keep her home. That is why I stay up late every night checking BP's, glucoses, and urine dips, emailing and texting doctors, because she would have missed this all if I was not able to do this for her.
Don't mistake me for some sort of angel though. One of the most upsetting sentences that I hear daily is, "I don't know how you do it." I don't either, but if it was your child would you chose not to do it? If you had this perfect healthy baby for 18 months who suddenly got ill and required so much care, would you decide not to give it to them? What would you do instead? Put them in an institution? Let them die? Those are the options I face with Audrey and I don't even see them as choices. So everyday I keep going, keep sacrificing. When I stop and think how much I, we have lost because of mito, I want to scream and cry. My marriage, my career, two homes, more friends then I would think was possible, my whole future. Everything has been erased and now boils down to taking care of the two people who depend on me. You never realize how casual relationships are, how fleeting friendships are, until you are tested with the ugly truth. Suddenly friends don't want to talk when they can only hear how sick you child is and how tired you are and husbands don't want to stick around when they have to hold your hand while hearing your child will be lucky to make it to 18. Even family members disappear. Then you are left as the only person responsible for more than you ever thought possible, completely alone in the world with only a few fellow moms who understand how hard you are trying everyday. The rest of the world moves on and passes you by with an occasional "I don't know how you do it" or "You're doing a good job." This is my reality every single day. So don't assign any virtues to me that don't exist. In the end I am just a mom doing the best I can to give my children the best life I can despite all that has been taken from us.