Let me start by telling you about the doctor. Friday we briefly met her as she was going to be the attending over the weekend. She was wearing her hooker boots with her fish nets as George would say. Saturday was the first day we had her as our doctor and when she rounded, I was too distracted by her spastic behavior to notice her clothes. George would swear she was "on something". Seriously. His words. Today, she came in wearing her jammies or something, acting just as she did the day before. Very spastic. And even though she had on her white coat, it was wide open for a nice view of her stomach which lacked coverage from her shirt.
Now I could have overlooked all of this had she had her ducks in the same row we put ours in with the previous team of doctors caring for Clayton. If you look back, I gave you a brief overview of the plan. Well, her plan and the one we had from the fellow that has been with us this whole time, but is off today, differed. Hers was slower, more cautious. Cautious is not bad, but her plan was unnecessarily cautious given Clayton's progress. She wasn't weaning him off the high flow canula or planning on putting him on the small one today. All things which had been previously agreed upon by other doctors given Clayton was doing good with everything. And he is doing great with everything!
She clearly did not want to compromise easily this morning, so she and I had what George called a "pissing match".
To those it may concern:
If there is ever a "pissing match" involving my child, I will win. I am competent, smart, a quick learner and most importantly, I am not so stubborn that I would ever put my child at risk. I am fully capable of listening to all the factors and making the decision that is best for my child. I know my child. I know his ups and downs and cues and I know when to question a doctor's judgement based on these things. I live with him around the clock. I know the things they can't.
Note to all parents:
Listen to the doctors, learn about the problem on your own and then pay attention to realize where the doctors advice may need to be customized for your child or loved one. At the end of the day doctors give advice and you get to choose whether you follow that or not. Sometimes their advice will work, but sometimes it doesn't cater to the specific patient. I am not suggesting fighting doctors on everything, but learn about your environment and realize that some doctors have more sense than others.
Doesn't matter if it's a fellow, resident, doctor or nurse, they don't know everything, even if they think they do. And if you want the best care for your child or loved one, then pay attention and learn. I am sure I am starting to sound like a broken record, but with the experience I've had over the past three and half years I have learned how important this all is.
In the end everyone agreed we would lose one of the nasal tubes and the additional IV he had left and we did (he still has his Hickman though). George and I told them we thought it was a better idea to give him a chance to eat on his own during the day rather than do continuous feeds, and that is what we are going to do. Then George and I said that he had proven that he is capable of supporting himself from a respiratory standpoint enough to downgrade to a normal canula, and after a bit of a heated discussion and doubt from the doctor, we have done that and just as I (and the previous doctors) suspected, Clayton is doing great! No problems!
This is my child's health, so we're not keeping score, but if we were it would be:
Rachel-1
spastic doctor-0
Clayton- exceeds expectations every time!
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