QiuLu has strabismus. Some websites indicate this may be related to Bartter's Syndrome. In any case, we came to the point where surgery was the only option. It was scheduled before the diagnosis of Bartter's Syndrome was made.
Because the medical community has very little answers about Bartter's Syndrome, I prefer to use Google. That gets me in trouble most times. It is my only option and I am unable to get guidance from her physicians. I am tired of being asked to spell the name of Bartter's Syndrome and all her medications. Shouldn't they know???
Anyway, Google has a lot of information that may be difficult to manage a patient with Bartter Syndrome under anesthesia. I tried for several weeks to make sure those taking care of her on the day of surgery would receive the information so they would be prepared. I was assured the anesthesiologist would have the details three days before surgery.
The day before surgery we had not received the pre-surgery call. So I called. When I was able to talk to someone, I tried to explain the Bartter Syndrome again. It was clear she was hearing the words but not the message. She continued to respond to my concerns by telling me that they were all mothers in pre-procedure planning and they understood. She clearly does not understand that dehydration is of higher concern with this child than a child who does not have Bartter Syndrome. She also does not understand that I am scared. This is a new diagnosis for us and no one, not one person, can share information with us. I become overwhelmed and begin crying that no one cares that no one cares if something happens to this child. No one that is except for me. That gets her attention. She offers to page the anesthesiologist.
The surgeon told us the pre-procedure planning nurse would advise us on QiuLu's medications for the day of surgery. She receives them every 12 hours and they help me to maintain electrolytes which are important every day but especially during surgery. Well, the nurse refused. The surgeon's office refused. What was I going to do? I do not have medical background.
They tell me she can have clear liquids until 5:00 a.m. Because she must take her medications with food, I decide to alter medication schedule instead of skipping it. I wake her up at 4:00 a.m. and ask her to drink a Pedialyte Clear and give her the medication. Hopefully this will help her maintain her electrolytes during surgery. This would be so much easier if someone who knew something about medicine were guiding me.
The next day we arrive for surgery and while I am going through the motions, I retain the right to not go through with surgery unless I feel comfortable with the answers. The anesthesiologist arrives and begins by saying he does not have answers to my questions about Bartter's Syndrome. Strangely that comforts me. He is the first person that outright admits he. I explain that I do not expect him to have all the answers. I know this is rare. It is estimated to affect 1 in 1.2 million. Yes, QiuLu you are truly one in a million, baby.
He does listen to me. He hears my concerns. He pulls his stool over to the computer and asks me to take him to the abstracts I read. He reads them. He explains what he will do if she has those complications. He makes no promises but he does provide me comfort, assurance and confidence.
You, doctor, are one a million too.
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