My brief foray to Tahoe was great. It was relaxing and beautiful and a good opportunity to recharge my batteries. Good thing I did, too. We were about halfway through the 4 hour trip home when I received a phone call that Maggie had a fever. Hmmm. Maggie never gets fevers. She must really be sick.
As soon as I go home I could see that Maggie didn't feel well. The nurse had already given her Tylenol, so the fever was down, but Maggie was peaked and anxious. We couldn't get an accurate oxygen saturation reading because she was moving so much. I assumed that meant she needed oxygen so we turned it on and that helped a bit. She had an OK night, but I knew she needed to be seen by a doctor. When someone looks like this, they are pretty sick.
We went to the doctor, who talked about putting her in the hospital, then to the hospital for tests, then to the pharmacy for drugs etc. In between those trips there were at least 8 phone calls and emails to various doctors. She has some sort of respiratory issue that is not defined. Could be a slight pneumonia, could be atelectasis (partial lung collapse) and she also has a Urinary tract infection. Bad combo. Makes for an uncomfortable and unhappy Maggie. She needs oxygen and she is on antibiotics, so I am hoping things improve today.
I am happily out of practice caring for a sick Maggie. She has been so healthy over the past year or so that we have been maintaining her health, which is a ton of work, but pales in comparison to the runaround and concern when she is ill. It didn't help that the runaround yesterday was far more complicated than it needed to be. Getting the chest xray added insult to illness.
It is NEVER easy to get a chest xray on Maggie. (I've written about it several times in the past) Maggie cannot get her body into the necessary positions to get a good picture. Generally one stands in front of the screen or sits on a stool. Maggie can't do either of those things. We can do it in her chair, but only after I remove the tray and the pole and the dynavox, take off the sides of the chair, flip back the laterals and the headrest and take off the straps. Of course then she is fastened only at the hips and I cannot let go of her for a second or she will be dangling by the groin straps. It is labor intensive and very physical, but I know how to do it and can have it all done in about 3 minutes.
Of course one has to get OUT of the waiting room and into the xray room to accomplish all that. That can be more difficult than getting the xray. When they see Maggie arrive, they know it will be a lot more work for them (though really it's me) and there are immediately barricades in place. Yesterday they used the delay tactic, perhaps hoping we would give up and go home. But we all know that's never going to happen
When we checked in there was one person in front of us. I was relieved, because I needed to get Maggie home and into bed. That person was called and another family arrived. The other family was called as three others arrived. Now it's been 20 minutes. All three of those people went before us and I finally spoke up. There is always the fear that we weren't entered into the system or something.
I inquired very politely why all these people who arrived after us were going in while we were waiting 35 minutes. The woman asked my name and I said McDonald. She gave me some attitude and said, "don't worry, you're next." OK. Properly chastised I returned to my seat and gave a wan smile to another mom sitting there with her 12 year old daughter. I told her "it's the wheelchair. No one wants to deal with it so they put us to the bottom of the pile" Amazingly she said, "I know, my daughter used to be in one and it happened all the time." I said, "I do so hate to inconvenience health care workers with my daughter's medical needs." The mom laughed and so did the 12 year old. We all bonded at that moment.
Them someone called Maggie's name and when I stood up she looked at the wheelchair and said, "oh, you need to wait here we have two more people in front of her and if she doesn't need to change (which she did not) then you can wait here." OK. Progress, I guess. Then they called the 12 year old girl with whom I had just bonded. The mom looked at me sort of helplessly and I started to laugh. I said, "just go, you paid your dues. Besides, they have to take us sooner or later."
Finally a full 45 minutes after we arrived, they came to get Maggie. The mysterious people who were in front of us never materialized and we found ourselves talking to the nice mom again. Her daughter was just finishing up and we went in after her. There was absolutely no reason at all that Maggie had to wait. It was just a game of pass the buck until they couldn't pass it any longer.
The woman who had gently chastised me was the tech. I said nothing. It was time to just get this done. Maggie was getting hotter by the minute. She asked if I was going to remain in the room, and I said, simply. "You will need me to hold her." I removed all of the supporting pieces of the chair, put foam behind Maggie's head and held her arms above her head so they could get their picture. I donned one of those lead aprons that weigh about 20 pounds and the xrays were completed.
As I started to put things back together the tech said nicely, "Please take your time. And thank you for your help."Again, I said nothing. It just seemed wiser. She was offering an apology of sorts because she knows I saw through the subterfuge.
It's called xray vision.