When Joe got home from work this morning he woke me up because James was running a fever. I looked into his bed and he was working SO hard to breathe. Even harder than yesterday. We gave him a neb treatment and I called the doctor to see what his x-ray showed from yesterday. No pneumonia, which is good news, but the radiologist said he could tell that his lungs were in bad shape, pneumonia or not. The doctor wanted James hospitalized to go through percussion therapy with a respiratory therapist IN the hospital. She said she wanted them to use a vibration vest (?) to help keep James' lungs clear. She told me they use these a lot in children and adults with cystic fibrosis. Fortunately James has tested negative for CF... She called the local hospital and they didn't want the responsibility, again, they are not really equipped for children and James truly scares all of the nurses at Delta Hospital... SOOO, quickly we packed ourselves up for another hospital stay. His doc spoke with a pediatrician from St. Mary's, she said to go through the ER, tell them what was going on, and then they could admit him for treatment from there. Well, that didn't happen. The ER doc treated us like we were over-reacting, which maybe I do once in awhile, but when it comes to a child with severe disabilities and illnesses, I think I have EVERY right to OVER react!!! On top of that, nobody in the Grand Junction area even had the vibration vest they needed in order to do the treatment the doctor had originally wanted, and since it was Friday afternoon, the chances of us getting one soon were pretty much nil. So he was ready to send us home. After Joe and I talked for a few, we decided we weren't really comfortable with this for a few reasons... One, we live about 45 minutes away. Two, it was snowing like CRAZY. Three, he was running a fever, having a hard time breathing and wheezing. I told the doctor my concerns and guess what he said to me.... "Insurance doesn't pay for mom's peace of mind." And that Joe and I don't need to bring James in for every cough or cold, that we should "learn to manage his care a little better."
WHAT?!?!?!?!?!?!
Let me just say this.... That dr is lucky he went home with all his teeth today...
So, we are at home with James. He seems to be doing a little better. Fever is gone. We are doing neb treatments every 3 hours instead of 4 and we have him in his little vibrating bouncer seat. They wanted vibration, right? We'll do it ourselves. I think we are managing just fine.
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I can not believe that doctor. If that was me, I would have knocked his teeth right out of his head too. If anyone ever had the nerve to tell me that about my son, I would freakin' kill them. I hope you spoke up to that man and said something like "just because you don't know how to care for my special needs son, doesn't mean that he is not sick and can't be well cared for somewhere else."
ReplyDeleteEnough of that rant. I am sooooo glad to hear James is feeling better. Did your Mom tell you that the 3 of us will be coming to Colorado in March? I can not wait for our boys to finally meet each other.
Before I end up writing a book on your blog, I just want to end by saying feel free to call me any time. If anyone knows what you are feeling and dealing with, it is me and I am always here for you to talk to.
Nichole, I just signed up on Google and it's calling me "ganyo", but this is Beth from TCH. I just read your Facebook update and I am so worried about you guys. I am praying for the whole family! I miss you a ton and wish that I could be there in Denver when you get there. Maybe you'll get room 817 again:) I am thinking of you all tonight and please keep me posted on what is going on. You and Joe are two of the strongest people I have ever met and I hope that you are starting to realize that! Big hugs to everyone!
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