Sorry for all who have been waiting to hear how things went. I actually started this post last night and fell asleep before I finished the first paragraph. And today has just been crazy, so I am finally taking a few moments to complete the post. I am going to backdate it for yesterday.
It seemed like such a busy day with appointments. And I only made it to one of them. Maia had blood work this morning to check her seizure medication levels. Since Maia's veins are so difficult, we take her to the lab early to get numbing cream applied. This sets for about 30 minutes before the lab techs attempt to draw any blood. Depending on how the blood draw goes, this can take some time, too. Mark had planned to take Maia to school after the lab appointment, but it got too late so he and the kids came home instead.
I met them at the clinic for the afternoon Neurology appointment, prepared with my list of questions. I didn't recognize the name of the person that we were seeing which had been a bit concerning to me. And when I met the physician, I didn't recognize her either. However, she is one of the residents who had seen Maia in the ICU and once or twice afterwards. So, she did have some knowledge of what has happened in the past 10 weeks. And after talking a bit, I did remember her. (Isolation gowns/masks make a difference in a person's appearance - lol!).
Initially, she asked how Maia was doing. I was pretty blunt. It depends on how you look at it. If I compare with three months ago, she's doing rotten. If I compare with two months ago, well... she's doing all right. I spent a fair amount of time describing what she is able to do physically right now. Dr. B just listened. Then, I asked my questions. Recently, we've noticed that Maia has a fair amount of anxiety and nervousness when she is lying down. There's been a change in her sleep habits, she's sleeping less and fighting sleep more. Could any of her medications be causing that? Is it necessary to do any further investigation in to where this infection came from? Is it possible that there was contamination at the time of her initial shunt revision in February? How do we prevent something like this from happening again? Why did she lose her speech after the subdural drains were removed? There were others, too. But, that's what I can remember right now.
Few of the questions were fully answered. Maia will be having a Sleep Clinic consult including overnight sleep study. If this is normal, it may be her tonsils causing the sleep problem by dropping backwards and giving her a sense of fullness in her throat which may cause anxiety. Unlikely to be medication related. Because many of the bacteria in her shunt infection are "normal" bacteria in her body, there is no way to eradicate them. No answers as to how to prevent something similar from happening in the future. No answers about her speech. Dr. B did review MRI and CT scans of the head before and after the drains were removed. She said that there was no evidence of increasing fluid after the drains were taken out which would account for the loss of speech. That was her only idea for what might have caused this. She did suggest that we consider trying to taper and discontinue one of the seizure medications if Mark and I are comfortable with that. If we have peace of mind because Maia is not having seizures right now, it would be ok to continue. But, all meds have side effects and if she can get by with only one med, that would be better for her. I'm inclined to agree. Worst case scenario, Maia will have another seizure. I certainly don't want that. But, if discontinuing one of them would help her cognitively, that would be wonderful.
At one point, Dr. B did say, "I'm so sorry that this has happened to Maia and to you. It makes me cry thinking about it." For that, I was appreciative. She is the first medical person who has truly acknowledged what we (and most importantly, Maia) has lost.
So all in all, it was a pretty anti-climactic visit. The blood work results were still pending so we are waiting to hear whether her medication levels are therapeutic or not. We will see Dr. B in two months. And that's about it.
I'm not sure whether to be happy, sad, or in between. Dr. B was kind. I'm not sure if she didn't have answers or didn't feel comfortable giving answers. That is one of the hardest things. If she didn't give answers because there is blame to be placed, well... I want to be angry at someone/something. Because then there would be a cause, a means of stopping this from happening again - either to Maia or someone else. But if there are no answers, that's almost more difficult. Because then, we don't know if this will be a recurrent problem. It's scary to me. I would not want any one to experience what Maia has been through in the past ten weeks. I don't want her to live through another infection like this one. She doesn't deserve that.
I am glad that God knows Maia's future. I'm thankful that He loves her and holds her in the palm of His hand. I am thankful that He allowed me the privilege of being mom to her and Matthew. And I am thankful that He has the answers to the questions even when I don't.