What day of the week is it again?

You can really loose track of time when everything you need to do revolves around someone else's schedule.  This afternoon Lucy’s nap was not as long as I hoped it would be, who was I kidding, nobody sleeps when they are in the hospital.  We met with the infectious disease team this afternoon.  They took a look at her site and even commented on how “oozy” it looked.  They are concerned that the strep bacteria could stick to her current PEG tube, and despite giving her antibiotics the strep could return because it is on the tube.  Just when I was celebrating yesterdays victory we are again faced with the possibility that this tube may need to go.  I am going to take the wait and see approach with this one, the infectious disease folks are not so much the optimistic types.  I understand, being realistic just goes with their territory.  They were also leaning towards staying on IV antibiotics for 48 hours vs. 24  hours.  This means possibly having to stay another night, ughh.  Speaking of IVs, we had to place a second one tonight because when we administered the first does of antibiotics her IV quite on her, big surprise.  Right away Lucy made it know what had happened by screaming out in pain.  Apparently the medicine has a burning feeling when it touches the skin, and after the silver nitrate experience today lets just say she has had her fair share of burning sensations for one day.

We had a visit from our neurologist today.  She came up to see us and discuss briefly Dr. Shoffner’s report.  We were able to discuss some thoughts on what to do next.  She is going to look into getting Lucy started on the mito cocktail.  We discussed starting each medication individually to see how she responds, if all goes well than we will be able to compound all the meds into a “cocktail” of sorts.  She has seen great  improvement in some patients who have been on some of the supplements in the cocktail, specifically CoQ10 and carnitor.  She is also onboard with starting the Leucovorin for treatment of the cerebral folate deficiency. We will see her in clinic on Monday to discuss further what Lucy’s needs might be in the future.  As for her immediate future she has ordered a EEG of Lucy’s brain tomorrow to see if we can detect any changes from her last EEG in September.  Lucy appears to be having a type of seizure known as petit mal seizures, brief staring spells.  Drew and I think that she has been having these types of seizures her entire life but now that she is older they are becoming more obvious to us.  Dr. Shoffner commented to us that it is very difficult to detect these types of seizures on an EEG or even a 24 hour EEG ,but just because you can’t detect them does not mean they are not happening.  Our nero agrees with Dr. S but does feel that doing an EEG could still yield valuable information when you compare her two results.

Drew and the kids came and had dinner with us tonight and boy were they a sight for sore eyes!  I know they feel so much better seeing where Lucy and I are staying.  They are always full of questions when they come and when they leave.  They picked out balloons for Lucy in the gift shop as well as a stuffed doggie because they know that Lucy loves balloons (Sara,if you are reading this she signed the word bubble for balloon;) a doggies. 

Well that about sums up the rest of our day, time for me to go to sleep.  I’ll update again tomorrow.