As much as we love the people on the 11th floor at Levines, we are incredibly glad to share the news that we are at home. It doesn’t mean that Miss Maddie is quite back to normal yet, but we just felt she needed to get out of there. She seems much happier and has been much more herself since we got to walk out of the hospital this morning at 8 am. We have already had a visit from the home health nurse to show me how to administer her IV antibiotics via her port here at home. She does still have her port accessed which means we cannot play quite as freely as we can when she is not having to receive IV meds. But we are thrilled to be home, and she really seems to be too. Two weeks is a long time to be inpatient.
We will restart seizure meds today too. The seizures are back but are milder than they have been in the past. We are not sure, but it seems like she may be having some different seizure activity than in the past. Her MRI was basically unchanged, so it does not appear that there was any new damage done by the septic shock and its treatment. So hopefully we will have some success with the seizure medication, and if we don’t we will just try another one. We will find a way to get some control over the seizures!
Right now we are just ecstatic to be home and that Maddie seems to be improving a little each day. We had an amazing view of the storm that came through Charlotte last night from our wall of windows on the 11th floor of LCH. Today is beautiful and we have already taken Maddie for a jog in her stroller. We are so thankful to have our precious girl back at home and getting better. Our lives have not been “normal” in a long time, and we don’t know how normal we can ever be again after going through all if this. But that lack of normalcy has made it possible (and maybe forced us) to learn to embrace the small wonders in life. The dogwoods look absolutely beautiful right now. And this recent crisis has meant I got to spend the last two weeks with my husband….what a concept! I wish it had been under better circumstances, but you have to look for the positives sometimes.
Happy Easter everyone!
Liz, Brandon, and Maddie, our miracle