X Ray Vision

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.

Lucy and Ethel

Maggie had a chest x-ray this morning, which is always an adventure. Inevitably, the x-ray techs are NOT happy when they see Maggie. They always ask if she can sit up on her own. When I say no, they realize they have to get creative. Today was no exception. I have to stay in the room, wear a lead apron and hold Maggie still in these wild positions so they can get the shot they need. It is like playing twister, only it is not a game.

Maggie is not sick, but some symptoms are starting. I know the drill well enough by now that this will continue for a few days and then she will be sick. I cannot let that happen. I have to go pick up #2 son from school on Monday and will be gone for 36 hours. The routine is carefully set, but a sick Maggie is not part of the plan. For once in her life she did this mid week instead of 5:00PM on Friday. Today is clinic day at Pulmonology and we scooted right in there. Sweet.

The doc ordered a chest x-ray just in case that rubber syringe tip she swallowed a month or so ago was the cause of the problem. My heart dropped at that thought. I presume she swallowed it and it’s stuck in her system somewhere; it never crossed my mind that it could be in her LUNGS. She just wanted to be sure, so off we went to radiology.

We were met by two techs I named Lucy and Ethel.

They frowned at Maggie, then looked at each other and frowned again. Lucy asked if Maggie had ever had a chest x-ray before. (Keep in mind Maggie has a trach, and generally they do not put those in without at least a couple of pictures of her chest to show it’s necessary). I just smiled and said, “About 10,000 times.” They looked at the chair to see how they would do it, clucked back and forth and seemed lost. I said, “Look, the way we can do this is put some foam behind her, scoot her forward in the chair, flip the lateral supports back out of the way and I will hold her so you can get the shot. It’s worked before.”

They said that would not work. Ok. I just pushed her into the room. Ethel was VERY concerned about Maggie’s Hannah Montana shirt because it had sparklies on it that are metallic and can show up on x-ray. “That’s ok,” I said, “let’s just take it off.” Lucy then went on for five minutes about how they need a plain t-shirt. I should never have put this shirt on her. “Weeeelllll,” I said “I had no idea we were getting a chest x-ray and don’t generally dress with radiology on my mind and we can always take it off.” That fell flat; my sarcasm was lost on these two. They were buzzing around knocking into each other. She started again with the shirt and losing my patience I said, “Let’s just do this, I’ll take it off her.” (for the 3rd time) “Ok mom* but next time….. “ I stopped her. “Let’s just deal with this time.”

They unhooked all of Maggie’s buckles and supports as I was putting on my lead apron.
‘Wait a minute”, I said, “she’ll fall!” Ethel says” No Mom”* she looks pretty stable to me. I said, “Well she’s not.” I lurched forward to catch Maggie as she started slumping over to the side. Neither even noticed. It was like watching C3PO buzz around; they were smart but oblivious to what was right in front of them. After conferring, they told me a chest x-ray was not going to be possible, and I told them she has done it before and we do not have a choice. More clucking and scurrying back and forth. I said, “Why don’t we try the foam and moving the chair parts like I suggested, it’s worked before.”

They started tossing foam behind Maggie and had me hold her hand above her head, but for some reason only gave me her right hand. I asked her to give me the left hand because I could not reach down and get it without letting go of something important. Not listening, Lucy kept putting the left one on the armrest of the chair. Maggie would move it, of course. I told her again that Maggie could not keep her other hand still and finally made a quick grab for it. I was like a magician pulling the tablecloth out. Now I am standing behind the chair trying to support Maggie in the chair, with no straps as she is pushed forward in the seat with her hands over her head. In addition, I have to make sure my arms are not in the field for the shot. It was very precarious. Lucy and Ethel thought this was a good time to move the entire chair back a few inches and then discuss it. I thought I was going to scream.

We got the shots. The lungs are clear. No foreign bodies. Yay.She needs antibiotics, but that's it.

Lucy and Ethel were high fiving each other. One of them came up to me and said “Try to remember next time she needs an x-ray, tell the tech that pushing her forward in the chair with foam behind her, moving the side things and you holding her hands up really works.”

Really? I will try to remember that.

Oh, and I am not your mom.