As some of you may or may not know Charlotte had to come in to the hospital yesterday via ambulance for seizures we just couldn't manage at home. Three wonderful months at home, and now it is back to "that time of year" where we just can't seem to make it at home. I probably have been trying to manage them at home for too long as it was, but yesterday after three doses of rescue meds, and valium in her j-tube every hour, when she started requiring oxygen and was still dropping her sats, it was time to come in.
The ambulance part for us has become second nature (unfortunately) but that is reality. Sophie was the one who was most affected this time - and talk about tearing his momma's heart in two when your four year old is terrified and crying and wants you and your two year old is seizing and needing respiratory support and needs you. It never gets easier, and never doesn't feel like you are picking between your children. An exhausting and devastating choice that is made everyday by parents everywhere for simple things, but is on such a higher scale for us.
The EMS team was not able to get the seizure to stop, so the decision was that it was best to get her to the hospital as fast as possible. All things considering it was probably one of the best emergent ER visits I have ever had. It took no convincing of doctors of what was going on, they listened, they treated, and they treated aggressively. Per usual the IV access was an issue, and this time even more of an issue because she was was actively seizing. After one attempt at an IV the decision was made to put in a intraosseous IV which is an IV in the leg bone. This is one time when it was too much for this momma and as hard as it was to step out, I couldn't watch. In actuality it is relatively painless (so they say) but the thought of drills and needles sticking up from her leg was just too much. I had to step out. I had to accept that my heart couldn't watch that. I left her in the loving and caring hands of the ER staff who I knew would take care of her and hold her like I would. It doesn't feel good to admit that I couldn't watch something, but it is the truth and reality. I just couldn't do it.
Once that was in they gave her enough mades to put me in a coma if not kill me which eventually around 10pm eventually stopped the seizure (that means seven blasted hours of seizing that we know of and potentially an entire day of seizures if she continued to seize during the short nap she appeared to take in the afternoon).
Today has been a somewhat quiet day for Charlotte. She is having tons of myoclonic seizures (these are just short few second bursts that cause her limbs to move or twitch). Probably every 2-3 minutes she is having them, however she is maintaining her vitals and not going in to anything bigger so I guess it is what it is. We decided with neuro there is no point to an EEG - it doesn't change anything, we know she is seizing - and in my mind puts her through another procedure that is pointless right now and is a waste of money. Neurology is tweeking meds around - increasing some of them that we haven't increased in a while and considering adding another one. At this point they are thinking the effect of our miracle drug the mexilitine is no longer working, it has reached its peak. We will check another level next week but for the past two months increasing has brought no changes in her seizures.
Sad stuff to watch your child seize for hours and hours. Sad, sad stuff.
Overall plan is home tomorrow if all goes well tonight. Marathon is still a go for all parties including her. After the week she has had this week she needs this Joy now more than every! We ask that everyone please, please, please lift her up in prayer so that she can get out of here and do the marathon. Seizures cannot steal her Joy not now and not ever!