Whew! Just writing the title of this post wears me out. It’s been one of those weeks where it seems there is something around every corner ready to smack me in the face.
Monday I received a letter from Molina Healthcare denying our request for a bed for Jackson, for the second time. For those of you who know Jackson you know he is a pretty big kid. He is turning 3 in a couple of weeks and he is still sleeping in his crib. He continually gets his arms and legs stuck in the rails/slats and hits his head on them too. Also getting him in and out of the crib is killing my back. So a few months ago I started researching beds for special needs kids and came across the SleepSafe bed. I looked at a few others but this bed seemed to fit Jackson and his needs perfectly. It has 4 solid sides with no rails/slats, we can get padding around the sides so when Jackson has a seizure he won’t hit any body parts against a hard side, a fold down side so I can easily lift him out of the bed, and it is twin sized so Jackson will have room to grow. Jackson would be safe in this bed when he sleeps. I showed it to his physical therapist and she started the process of ordering it. Then Molina denied it and suggested he would be better off in a hospital bed with side rails. What a joke! They might as well send us a box of poison to feed Jackson, he would easily be strangled to death in that bed. So after two days of desperation and thoughts of “What are we going to do?” I decided to appeal their decision. I have 90 days to get letters from his doctors (which is going to be a feat), write my appeal letter and provide documentation on why a hospital bed is not a better choice than the SleepSafe bed. I’m also supposed to provide another option than the SleepSafe bed that is more cost effective. It pisses me off that I have to fight to get my son a bed, but it pisses me off more that I have to go through so much work to do so. It’s bad enough that our son has this rare brain malformation, seizures and delayed development. For insurance companies to make us go through this lengthy process and essentially beg for a bed for our son is humiliating. How I would love to be able to walk into a bed store and buy Jackson a bed and not worry that he wouldn’t be safe while he slept. It’s something most parents just take for granted.
Tuesday our IPad crashed. I loved our IPad but it often wouldn’t let me download Apps and it didn’t perform certain actions that it was supposed to. Then Tuesday I was trying to download a game for Jackson and it just froze up. This dilemma of my crazy week actually ended up being a highlight. After freaking out and imagining our money down the drain, I made an appointment at the Apple Store downtown. I had never been to the store before and had no idea what to expect. I was pleasantly surprised! After listening to my description of the various problems we have had with the IPad and them not being able to run diagnostics on it, the technician told me not to worry, they would just give me a new one. What?! A new IPad? I wondered to myself “Great, how much is this going to cost me?” It ended up being nothing, nada, zip. The guy handed me a new IPad, had me sign a piece of a paper and the crises was over. Thank you Apple! Turns out our IPad was bad, the new one runs beautifully and I can do more than I ever imagined on it. Our broken IPad was great, our new IPad is fantastical!
Tuesday also just happened to be the day of my nervous breakdown. Ok maybe “nervous breakdown” is a little over the top but it was definitely some kind of breakdown. As most of you know Jackson was over at Seattle Children’s Hospital for 3 days back in March for some tests. The tests were to determine if Jackson was a candidate for surgery to reduce or stop his seizures. After we left, the doctors and specialists were supposed to meet to discuss the results of the test and to determine if he was a candidate. They were either going to meet the week after we left or the week after that. Well two weeks went by and I still hadn’t heard anything so I called the nurse coordinator. She informed me they hadn’t met yet but were going to meet on Monday, April 11th and she would call me first thing Tuesday. By this time I was going crazy. Waiting to hear whether or not Jackson may have a chance to have surgery to stop the seizures and give him a better quality of life weighed heavily on me. More than I realized. Monday I woke up and the first thing I thought of was “They are meeting today.” I thought about it all day long. Tuesday I woke up a nervous wreck. I couldn’t eat, I carried my phone with me everywhere and turned the volume up so high so I could hear it all over the house. By 10 a.m. I was so edgy I called the nurse coordinator, who didn’t answer, so I left her a message to call me. Between 10 a.m. and 2 p.m. I probably called her about 15 times without leaving messages. Around 2 p.m. I left her another message. By 4 p.m. I was frantic. Why wasn’t she calling me? I called her again and left her a not very nice message. I won’t go into details but I will say that I cried off and on and let her know that it was unprofessional, disrespectful and cruel to leave parents waiting and not call them when she had told them she would. Then I began calling every number at the hospital I had. Voice mails and automated systems was all I could get. I finally got a hold of the neuropsychologist we met with who told me the meeting on Monday had been canceled. I again started crying on the phone. She was very understanding and got me calmed down. She told me they were meeting on Friday the 15th and would make sure I was called after the meeting. I hung up the phone, sank to the floor and cried for a long time. The stress of waiting had apparently taken a toll on me that I didn’t realize. After crying my eyes out I called the nurse coordinator back and told her I was sorry for leaving a mean message but that I was also not sorry. I explained that they need to know how important this is to parents and that there should be better communication, among other things. Since then I have gotten about 3 calls from different people at Seattle Children’s wanting to talk to me about the lack of communication and what they could do to better serve parents. They are supposedly going to have a meeting about it and come up with some solutions. If something good comes out of my “breakdown” it will be worth it.
Dealing with greedy insurance companies and oblivious doctors and hospitals is not the life I thought I was going to have. There are definitely days where it is not the life I want. But here I am, and if my fate is to spend my life fighting for my son then I will do it. With tears in my eyes, a knot in my stomach, and my heart overflowing with love for my son, I will do it.