Yesterday I was having a horrible day. It started with Dillon having a pretty violent seizure and continuing to be jumpy all day. I was unable to do his school because he wouldn’t calm down. I know he is teething and I think it may be due to pain in his mouth. Before when he got teeth he was so doped up on drugs he was unable to react to the pain. I decided to take the day and make all the phone calls I needed to make. I had to call and find out why Jay’s birth certificate I ordered 45 days ago never came. Bottom line, they don’t know so they are resending it. I need it because the social security office lost his SSN card when he was born. I can’t file taxes without his SSN, I can’t get his SSN without his birth certificate. It seems silly, but please pray I can get both of these in time to file taxes!
Then I had to call a company about getting Dillon his equipment (wheel chair, stander, bath seat, supported chair, and crawler). The vice president of the company I was using had has my order since Nov 7 and still not even placed a request for approval to my primary insurance! In other words he has done absolutely nothing to get Dillon this equipment in 6 months! I ask my attorney to help me with this matter as I want to be sure he does not ignore other kids in the future. I have called tons of companies my insurance gave me but none of them deal with the pediatric equipment I need. I thought I had one that would but then they said Oops, never mind we can’t do it since you aren’t ordering power equipment. My social worker was able to get me the name of another company. They are supposed to be coming next Tuesday to measure Dillon for all the equipment. Please pray for this as well as we need to get this stuff as soon as possible and it normally takes minimum 2 months.
I have never heard from my insurance about some things the doctor requested such as a better bed for Dillon that the nurses can rise and lower to help take care of him. I have left a message with my insurance case manager and still have not heard back from her as of now. I will have to call her again tomorrow. I am learning to make a pest of myself!
I then had to call my insurance and find out why the lady in the office (different lady than above) kept putting off getting the request in for Dillon’s day nurses. Her manager assured me that she reviewed this lady’s computer and that she did not have any of the paperwork until she personally asked the doctor for it on Friday (she was trying to stress how this lady went above and beyond the call of duty). My questions were: 1. Then why is she asking me for paper work that I sent her about 2 weeks ago? And more importantly, 2. Then how did she read me the letter the doctor sent her the Friday before? I got no answer. However, I did get a call from someone else who went over everything with me and called me a few hours later saying “you are approved; your nursing care will start as soon as your agencies find you a nurse!”
Meanwhile, Dillon is still jumping nonstop. I called the naturopathic doctor that has been helping me and she told me what to give Dillon and it did stop the jumps. Now he keeps getting it but when he does I give him some of the homeopathic remedy and it usually stops pretty quickly. Today I had a meeting with my nursing agency and two nurses. One is a night nurse, they are trying to take away the nurse I have now, and like a lot, to give me a different one, who also seems very nice, because they want my nurse to take on a case closer to her home. I told them it is up to her, I like her and will not take her off unless that is what she wants. Long story here as to how they went about trying to make this happen that I won’t go into all I will say is there was some serious manipulation going on and the nurse and I are not happy. I have written a letter about it all and will be sending that to the agency tomorrow just to inform them of what I have seen going on so they will know. The second nurse is the day nurse that is going to start. She stayed for a few hours today, she is very nice. This is where I need prayer! It is so hard to have someone in your house from 9am-6pm 5 days a week. I also have great concern about being consistent with training JayDonn with people in the house all the time. Please really pray for me as I learn to accept this. It was hard enough to accept night nursing care, but I knew I had to as I wasn't sleeping and it wasn't fair to Dillon to struggle all night. This is different, this is during my time with Dillon. I know I need help so I can cook, clean, and do laundry, but it doesn't make it any easier. I am sure any Mom reading this can stop and picture what it would be like if you had to have someone in your house caring for your child! It is really, really hard! I need your prayers! I am thinking of what has become my life verse again even in a situation like this... Luke 22:42 "Saying, Father, if thou be willing, remove this cup from me: nevertheless not my will, but thine, be done." There are some decisions being prayed about that may be God's way to remove this from me, but if it isn't God's will then I need to be ready to say "Not my will, but thine, be done." Thank you!