God is Good...

Friends, it has now been three weeks since we came home from our nearly month long stay and ordeal in the hospital.  While it is great to be home we certainly are not immune from challenges.  Trying to balance work life, home life, and Princess' physical limitations has been quite the chore to juggle.  While things have been manageable, it has truly been an adjustment to balance multiple weekly and sometime daily nurse visits.  Recurrent doctor appointments and transitioning into "life."  Princess is continuing to improve, and while it is slower than what we really would prefer, we are excited to see that she is progressing. 


Our biggest praise for the update is that since Princess' last recorded seizure in the ICU, she has only recorded 2 seizures total.  Yes!!!  Miraculously, things have been well in this regard and the two seizures she did record were both on this past Saturday.  Having been through what we have just experienced we did make a quick trip to the ER to check labs.  Thankfully, her labs, namely her sodium levels, were fine and she has not recorded any seizures since then.  Praise the Lord!


Therefore, in nearly 30 days, Princess has only recorded 2 seizures.  In our 11 year journey, this has actually never happened.  Praise the Lord for His mighty work. We also have stumbled upon another potential cause of her seizures that I will discuss later through another post.  More importantly, through this discovery that we have literally stumbled upon, we are looking forward to continuing to test our theory and continue to look towards a favorable outcome for Princess.


We did have a follow-up with the ENT today and Princess' voice is probably around 90% of full strength.  It is fun to hear more of her voice and see her improvement.  From the trauma that she sustained from the dual intubations, the ENT sees dramatic improvement with still some swelling and expects that in a few more weeks that Princess will not have any complications.  Her pneumonia also seems to be treated and not pose any issues. 


It does seem that Princess' shingles has improved and she is now just experiencing some residual nerve pain that should clear in the coming months.  Along with another autoimmune condition, Princess has experienced a little bit of alopecia.  This has truly been interesting as she has lost a significant amount of hair just prior to the ICU and then after removal of the EEG when we left the ICU. 


Lastly, it is truly amazing the toll that the ICU and the seizures took on Princess' body.  Her musculoskeletal system is pretty sore and it is very apparent that it will still take some time for her to fully heal.  Currently, we are dealing with sore muscles and knots in her back and neck and extremely sore leg muscles.   Her walking is continuing to improve and we are not needing the walker nearly as much around the home.  We are still dependent upon the wheel chair for most things outside of the home and are working with physical therapy to increase Princess' strength. 


Thank you for all those that are continuing to pray and check in.  Princess is getting better and we are cautiously optimistic with each day.  Sodium levels seems to be holding steady.  We are monitoring her potassium levels closely as this has also been a challenge to maintain.  Above all, it is encouraging to see Princess getting better!


I look forward to posting more soon!