Updates from last few days.

All updates below via Rachel on Ryker's facebook page.

9/15/12 Today marks exactly 6 months since Ryker was admitted to Boston Children's Hospital at only 8 days old....
After 4 open chest heart surgeries (2 of which open heart), 1 intestinal surgery, 3 caths, 3 days of ECMO, Numerous surgical/sterile procedures, 6 Cardioversions, 8 CICU Rooms, 6 Recovery Floor Rooms, Hundreds of Echoes, EKG'S, X-Rays, IV's, & Blood Draws & countless consent forms signed........

Our Beautiful baby boy is still here & tougher than ever!! He has learned loud & clear how to get the nurse's attention (he does this SO well & he loves every minute of it:) & we all have learned so much more than I could even begin to describe!!!
That day (March 15th) was one of the many top stressful days of my life, yet such a great day to finally get our baby boy clear across the country & into the hospital that was going to truly help him! I LOVE BCH & all the staff & we are SO grateful for every one of them! They are all like Family!! ♥ One day it will no longer be our "Home" & it will be our favorite visiting place to come & show off our cute thriving Ryker too!! Can't wait for that day!! :)

9/15/12 Ryker had a pretty good night. He seems to be recovering well. His Temp is gone!! :) & all his numbers look really good! His labs are all good except that his white blood cell count went up a little, (that one always makes me so nervous!) so we are having the picc team get involved to see if he may need a new picc line or if we can remove some of his other lines that could have any chance of infection. But none of his blood cultures have come back positive so far....Thank goodness! He is still paralyzed & sedated to let him get some good rest & probably will stay that way for most of today. Thank you so much for all your positive thoughts & prayers! We know they help so much!

9/14/12 Sweet little Buddy is so tough!! This is right after he got cardioverted around 6pm today. He didn't even cry....dont worry they gave him good sedation for it. Absolutely breaks my heart!!

9/14/12 So...Ryker has had another rough 24 hours :( He was dealing with a lot of withdrawals & then he spiked a fever late last night. From there they did the normal- start antibiotics, run cultures, & around the clock tylenol, but even after all that the fever never went away it just went down a little. Then today at about 3pm he spiked another fever of 39.8 (approx 103.6 F) & everyone was pretty worried! So while they were in the process of changing some things I mentioned that while looking at his monitor it looked like he may be in flutter (it is EXTREMELY HARD to tell if he is in flutter because of his pacemaker settings) So we got EP (The Electro Physiologists) in here & sure enough he was in flutter. So my poor baby boy had to get cardioverted (using the defibrillator paddles on him) again to get him out of it....I HATE SO BAD that this is becoming a semi-normal thing for him!!! It breaks my heart! :( :( & now He is stable & looks much better! His fever was still a little high so they have decided to give him a night of full rest after him having two rough days, so they have put him onto a cooling pad, paralyzed & sedated him. Now we are praying for a very quiet & un-eventful night!

9/13/12 Sweet little Ryker's day today was a little rougher than we would like...:( We have had to wean him down on his Morphine & Versaid drips (that were started while he was on ECMO) so that he can get closer to extubation & he is now struggling with symptoms of withdrawal..:( My poor baby is dealing with way too much! Please send him positive thoughts & prayers that he might be able to feel more happy, rest comfortably & have a better night tonight!