I got a great phone call on Tuesday from someone at Hendrick telling me that YES Miles will be getting the Bair Hugger. For those that don't know what that is...it's a piece of medical equipment that he always uses at the hospital to warm his core body temperature. It's used for hypothermia...and for Miles. He uses it here and in Ft. Worth. He's basically the only kid that uses it. Most of the nurses don't even know how to set it up or use it. I usually am the one that gets it all ready for Miles. I've been saying for almost a year now that Miles needs this at home.
His insurance said NO.
It's just such an uncommon thing to have in one's home.
Still, we needed it. We keep him covered with fleece and an electric blanket, but it still doesn't warm him enough. Yesterday his legs were ice cold.
Anyway, as I've told some of you...In September Miles was in the hospital at Hendrick and his doctor agreed with me that Miles needs the Bair Hugger at home. There was a social worker talking to several people to see if we could get this machine. Like I said, insurance said no. Even the medical supply companies said they couldn't even order the machine. It had to be purchased and delivered to a hospital. Several months ago I tried to get a hold of the company myself so I could see if I could just save enough money to buy it. The company wouldn't even talk to me because it's not for individual use. That's so strange considering that Miles actually uses it more than anyone in our whole city. My hands were tied. Anyway, before we left the hospital that time the social worker came and told me YES he was going to get the Bair Hugger. She told me that CMN (child's miracle network) was going to buy it for us. I was so thrilled! We've never personally received anything from CMN so that was exciting. She told me that it would be ordered and delivered in about two weeks. That was going to be awesome because that was when I was going to return from having Miles g-button surgery. That would have been the end of September. It felt like it was all going so perfect.
THEN...I got a message on my phone from the same social worker saying that, "Sorry. We've changed our mind. We're not going to be able to get your son the Bair Hugger." Then she said something silly like, "I don't really know what else you can do, but maybe you can call the pastoral services and someone can help you there. I don't really know their number, but if you call the hospital..." You get the point. The run around.
I think I was so shocked by that message that I didn't know what to do. I wanted to call and say, "What the ______?"
I went a different route.
I told on her.
2 weeks ago I had to take Miles to see the doctor. I told Dr. Wiley what had happened and he was shocked. He left the room abruptly and called the social worker. He ended up leaving her a message and told her, "If you want me to admit Miles in the hospital every time he has a 90 degree temperature then that's just what I'll do." He came back to the room and said that she would be calling him back later. Dr. Wiley is so mild mannered, but he got rilled up. I told him it was good to have him on the team. I didn't hear back from him.
Then...I told on her again.
Miles' physical therapist is on the board of CMN. I told her what happened and she was so mad. She couldn't believe it. She told me that she was sure that Dr. Wiley was handling it, but just in case she would get to the bottom of it. That was on a Thursday.
Then on Tuesday I got a call from the same social worker and she was so pleasant. (She didn't say one thing about the possible ass chewing.) I was glad about that.She told me that she was pleased to tell me that CMN was going to buy it, and as a matter of fact she ordered it the week before and it should be delivered in one more week!
I got a letter in the mail yesterday that I wanted to share. Yes, I know in the letter it asked me not to share this info, but I had already soiled the name of CMN to a couple of you so I wanted to show you that they have come around and that they're sticking to their word. It made me realize that CMN doesn't usually work on individual basis so that made things a little more clear. Here's what it says:
Dear Ms. Wilson: (that's me)
Hendrick Medical Center Case Management Department has agreed to provide your son, Miles Wilson, with a Bair Hugger Warmer and 10 pedi blankets using Children's Miracle Network Funds. It is a rarity to have funds available to provide for individual children. However, considering the extreme circumstances surrounding the seriousness of Mile's chronic condition, we feel it is appropriate in this isolated instance to be able to make this contribution. As such, we would appreciate your discretion in receipt of the equipment.
We sincerely hope having a bair hugger warmer at your home will help keep Miles out of the hospital by maintaining a more normal core temperature.
Then it's signed by someone...Her name is then followed by all these initials: RN, MSN, CRRN, CCM, FACHE
That's a lot of initials.
I'm hoping this machine will help keep Miles out of the hospital! I'm thankful that CMN is buying the machine. I guess we need to keep that info to ourselves. Don't tell every little boy in a wheelchair with bluish feet that CMN will buy him a machine to warm him up. They would not appreciate that.
I'm so glad God is Miles' provider.