On Saturday, we had to take Eve to the ER. She had a really bad pain episode and the morphine wasn't touching it. She was in her wheelchair, getting ready for bed. Jim brushed her teeth and then suddenly, she got all stiff and was in pain. She gagged and then retched. I gave her the dose of morphine, but 15 minutes later she had no relief. So I called the neurologist to double check if I could give her the booster dose (she said yes). I then gave her the scheduled other meds (which included Valium) and watched her. If I even tried to move her legs, she cried out in pain and her arms shook. We got her out of her chair and laid her in her bed while I waited to hear from the pediatrician about whether or not we should go to the hospital. She was like a little statue frozen in fetal position and when we changed her diaper it was very painful for her.
By the time we got to the ER, she was doing a bit better. The staff there were wonderful. The doctor ordered bloodwork and a urine culture. He said he wanted to look for things that would make her go downhill fast. I warned them she was a "hard stick," and boy was I right. It took 5 tries to get enough blood to test. The urine showed bacteria, but they never sent out the sample for a culture (who knows what happened), so I don't know for sure. But I don't think this is a UTI. They had a hard time getting the catheter in, so maybe it wasn't the cleanest catch. All tests came back normal, so they sent us home.
Sunday, she was super super stiff. She seemed in pain, but her regular doses of Valium seemed to help. I also increased her Miralax because I suspected that she could be constipated which could be adding to what ever is going on. She did much better starting Monday, though still tight and stiff in the hips.
Yesterday (Wednesday), we went to Springfield for her scheduled neurology appt. I expressed my concerns: She has such incredible difficulty holding up her head, the increased gagging, the possible seizure last month, her pain and tightness (making it difficult to change her diaper and dress her), she's less responsive (not as quick to smile sometimes), she's sleepier (she fell asleep in her chair both Tuesday and Wednesday afternoon) etc. He can't do anything about her head hanging- that's a job for wheelchair equipment, but he acknowledged that the simplest fix (tilting back her wheelchair) wouldn't work because it would cause her to gag. The gagging is a reflex that is exaggerated, like many of her other reflexes (e.g., clonus) and is typical of kids like her or those with CP. He said some people think you can use medicines to target that, but he doesn't think they work. He's not worried about the seizures unless they become numerous or are convulsive. Up until now they have been absence seizures. He increased her Valium dosage to help with tightness and has referred us to a physiatrist at Shriner's Hospital. He thinks it's time for Botox injections to target specific muscles and relax them. So, we're waiting for an appointment for that. I left feeling good. He apologized for not having fixes for me, but I told him I was glad we at least had a direction to go in with this new doc. I didn't feel helpless.
Today, we had our well visit with our pediatrician (whom I adore). It was a great visit with laughter and tears (for both of us). Amazingly, Eve hasn't seen her in a year. That is testament to how healthy she's been lately. She gave Eve a flu and pneumonia vaccination. She also shared with me what the ER doc wrote in Eve's file. He said that Eve was "exceptionally cared for" by her family. I was touched. That's kind of incredible. I think of myself as just doing what anyone else would do for her. And I know I'm not perfect. I could always be a better mom to her. But, it was really nice to hear.
So....just as I was thinking we have restored balance to our life, she had a repeat episode tonight. Just like on Saturday. Jim brushed her teeth, and then all of a sudden, she had a pain spasm. Her legs got stiff and she pulled them up to her chest. Her arms got stiff and shook. She gagged. She was moaning in pain. I was just about to give her the night meds (which include the increased dose of Valium), so I went ahead and did that. I left her tube in, in case I needed to add a dose of morphine, and got her into bed. I tried venting her tube in case she had air in her stomach (there was none). As I changed her diaper and clothes, she seemed to get more comfortable. We put her to bed, and she is sleeping pretty comfortably, but her knees are still drawn up a bit. It was just pretty weird because it was so similar to Saturday night (even with the gagging). It makes me wonder if we should have gotten her out of her chair sooner on Saturday - but we were worried about the gagging and retching.
I don't know. I don't know what's going on with her. I'm worried (more that I was this morning), but I feel like this new direction of investigating injections is comforting. What a week.
2 comments:
"I could always be a better mom to her" - this is what you have said in your post. This is someething that all us parents think about on a daily, sometimes hourly, basis. Parenting is THE MOST difficult job that anyone will do in the entire frame of life on earth. There is no instruction manual and what works one day, may not work the next. Even when the kids become adults (like my big guys!) the parenting never stops. We worry, we worry, and then we worry more that they are happy, that their lives are going in the direction they want them to, that they are well. We think about things we've done in the past - did this, or that, have some undesired affect? - Did we give the wrong advice? etc, etc, etc. Any parent worth his or her salt will second guess and question themselves. Parenting is exhausting, brilliant, fabulous, marvelous, wonderful, saddening, frightening, frustrating.....you get the picture.
Therefore, knowing all this, you have the added colossal burden of caring for a dear little soul who cannot function in regular ways and who cannot communicate with you about what is troubling her, or even what makes her happy. You have to guess with every-increasing variables when deciding how to help her. The ER doc hit the nail on the head. Eve is so well-cared for, she is so loved by everyone in the Claffey household and many, many others outside of that household.
However, I think you need to know my lovely friend that I constantly tip my hat to you because of the phenomenal job you, Jim, and Seamus are doing in giving Eve as comfortable, happy and normal life as she can possibly have. You are an amazing lady Duchess, and an enormously fabulous Mum/Mom, with a capital M. I know you were not looking for a comment like this when you posted what you did, but I have to let you know. Not only are you caring for this special young lady, but you are also raising an incredibly funny and sweet young man, being the best possible wife you can to an amazing guy (you definitely selected a diamond) and being an effective and committed educator who is shining in a stunning career. You are doing all that with care, committment, love and more. Hang in there lady! We love you!
Thank you, Karen. With all my heart, thank you.
Post a Comment