A couple weeks ago Rett Syndrome decided that it didn't have enough power over our little Annie and came back for more in the form of seizures. Our day was eerily similar to what happened in October - Annie had an incredibly lethargic day that lagged on into the evening. I got very worried about her behavior, going back and forth wondering weather to call 911, take her right into the ER or wait it out and see if I was overreacting. And then of course during my hesitation she started seizing which I was semi prepared for, what I wasn't so prepared for though was the blue lips - that has only happened to her when she has choked (which happens all too often) or when her autonomic apraxia stops her wind pipe from opening and she is not able to take a breath. The first thing that came to my mind was "She needs oxygen and we don't have any!!" So of course we called 911 - thankfully Annie's color returned and we asked them not to dispatch trying to lessen the trauma to James and Grace.
When we got to the ER we were given a "room" where Annie seized again, and again. Ativan was given and we were blessed to have the same ER doctor we had in October so we didn't need to reexplain our situation. Of course meningitis wasn't even a thought this time but labs were still drawn since Annie seemed to be sick again this time (throwing up and lethargic even prior to the seizures). We of course were admitted but this time just to the regular peds floor not the PICU (oh how we missed the PICU!)
That night was very eventful, after getting into the room at about midnight it wasn't long before Annie's blood pressure became a concern and we had doctors and nurses in every few minutes to check and recheck on her. Her blood pressure was dropping into the 60's/30's which was more alarming then the seizures. They started to push IV fluids which seemed to bring it up slightly but we were kept for another night to observe the BP's and determine if anything else needed to be done. Of course we had x-rays and EEG's and EKG's and saw a large team of doctors and residents. We got put on keppra for seizure control and we slowly started to see our Annie come back to her typical self. We were discharged on Sat. night, ready to get home but reluctant to be without the piece of mind of an automatic BP cuff, monitors and the wonderful nurses that took such great care of all of us.
Annie is now on seizure meds for at least 2 years as long as their no more seizure activity which, unfortunately is very unlikely. Scott and I are still adjusting to this new symptom. The first thing that came to mind when I realized that this was going to be a long term thing was the fear of never seeing our Annie again. I feared that seizure meds would cause her to be extremely lethargic and almost catatonic. Of course I was fearing the worst. We are still adjusting to the meds and there have been a couple dose changes so it's still hard to tell but for the majority of the day we are seeing our Annie which is a blessing.
I'm so angry at Rett Syndrome. I wonder when it will ever back off but in reality I know that it never will, it will keep taking and taking until it has taken all of our sweet Annie and we will need to say goodbye. I'm not ready to do that. I feel as though I am literally in a race against time. She deserves to be saved, all of the girls with rett syndrome do. I have promised Annie that I will continue to fight with all I have until the scientists and researchers come up with something to help her.
I have been fighting with God about all of this. Hasn't she suffered enough? What on earth are the seizures going to prove that couldn't already be proven. We have come to terms for the most part on most days about our sweet Annie battling daily with Rett why is she, why are we, being tested again? I don't know the answers and I never will, another lesson I am forever learning. I do know that there are a couple ways that I can handle this, become cold and hard and bitter and resentful which will almost certainly carry down to my children. Or rise up, fight, pray, stay in faith, press on and do it with grace, dignity and a smile on my face.
I'd like to be the person that does the latter but my heart is still very angry - angry because of the pain, the craziness it has brought to already fragile hearts, the extra stress this puts on us, angry about the people who aren't there for us, the ones who would rather look away and pretend they don't see, angry at all that has been lost. Although as time ticks on I am hoping to see the joy in this, the compassion and strength it brings our family, the blessings of my family and our friends that are constant in their love and support, and the amazing joy we will feel when God releases our cure and we can say goodbye to this season of our life realizing that it was all a perfect plan. I'm trying to get there, slowly, slowly, I'm trying to stay patient with my self and with others but it is a very trying process.
"The only ones who rest in God are those who have wrestled with God... There is no tighter embrace than the grip of the wrestle."
Voskamp, One Thousand Gifts
