We got the okay to go home from neurology and cardiology. We could have gone home a day sooner but Maci was having some weird heart arrhythmias that they wanted to monitor closely for a bit longer. We noticed that when she is sleeping she goes into 2nd degree type 1 heart block. So basically that means her heart would skip beats throughout the night. Her heart rate would also get very low- lowest it got was in the 40s- this rate is even low for adults and especially for an infant. Cardiology thinks it may have to do with how many anti arrhythmic meds she is on for her heart. They decreased the dose of the one med she is on that also lowers her heart rate. Since lowering it we haven’t seen much change in her low heart rate. So we will ride this out until we see Dr. Law on the 14th of this month. We hope it is nothing serious but also concerns us and we want answers as to what exactly is going on. 

As for neurology she is doing well. On Thursday she had a MRI of her brain to look for any brain damage that might be contributing or causing her seizures. With her history of a small brain bleed and several cardiac arrests they were concerned this would be the cause. Miraculously her MRI came back completely normal and no damage was seen! They did incidentally find an arachnoid cyst but at this time it is not causing any issues. We will recheck on it in a year. Only time it could cause an issue is if it grows and starts to push on her brain. Hopefully this doesn’t happen but if it does her neurologist says it is a pretty simple surgery to get rid of it. So since there is no damage to her brain and it is normal for her age (truly a miracle!) he is thinking something genetic might be happening. Since she has had so many issues already in her 8months of life (SVT, hydrops, and now seizures) he is thinking this might be what’s going on. Beginning of March we sent off a complete genetic panel for Maci to see if anything genetic may be causing these issues. These take a couple months to get back so it’ll be awhile before we will know if Maci possibly has a genetic disorder that could be causing these issues. 

We are still running the course of her prednisone steroid to hopefully get rid of her seizures. She will be on a high dose for two weeks and then after that we will gradually taper the dose for another two weeks. She isn’t too swollen yet but her doctor said she will retain some fluid over the next month or so. We will have to monitor her closely at home and make sure she isn’t having anymore spasms. If she keeps having them we may have to switch her medication from prednisone to ACTH. This is an intramuscular injection but the med is not readily available and is extremely expensive. Hopefully the prednisone does it’s job and puts her seizures in the past. We will have multiple follow ups with neurology for EEGs to make sure her seizure activity goes away and she continues to develop normally. Even though this round of steroids should hopefully take care of her infantile spasm seizures for good, she will be at a higher risk for other types of seizures as she gets older. Praying this isn’t the case for Maci! 

So now all we do is wait and see if her steroids work and get rid of the seizures. We will also get more answers to her heart issues on the 14th when we see Dr. Law. 

We want to thank you all again for all the thoughts, prayers, and support during yet another stressful and scary time. 

Love- Dani, Matt, and Maci