It was a restless night until Jack got some Tylenol at 4 am and settled down to quiet sleep in time for his lab draw. :) The lab tech was super sweet and felt really really bad about waking him up. He was really upset and that left eye very nearly came on out. Thank goodness I already had a lot of lubricant in it. I just slid his eyelid down around his eye and held it for a moment. It's not really a sight you want to see.
Jack is <SURPRISE!!!!> sick of laying in the bed. Fortunately, this morning Dr. Wellons told us that, sometimes on the usual neurology floor, the nurses let the kids ride in a wagon with the drain leveled out on an IV pole. It all depends on the nurses' comfort level. Our drain is already on an IV pole so we would just have to re-level Jack sitting up in the wagon. I am hoping that they will let us give it a try.
Jack has developed some troublesome respiratory symptoms. He's got this little weak ineffective cough and his usual crystal clear chest sounds a bit raspy. I've talked to the nurse and respiratory therapist. We're going to give him breathing treatments every 8 hours today and hopefully that will help things. I think getting him up will really make a difference so I am really going to kind of push for that.
Yesterday, Jack actually tried to draw on the little magnetic board Annie from CCA gave him after his last surgery in Dallas. That's a big deal because Jack is really not into drawing, coloring, sorting, or really any fine motor activities. Maybe he has started to realize you can have fun sitting still without watching a Baby Einstein or Signing Time DVD. He also really enjoyed looking at some books. There was, of course, "The Book" made by Jessica but he also has a new book that Michi (Michelle) bought him with Mommy and Baby Animals. It has these really easy to turn pages which is great but Jack really did look at the pictures and signed some of the animals. It's funny. If Jack can't remember the sign, it's a cat. :) Ms. Donna brought Jack a cool puzzle and a little airplane and wind up tractor and dog. We have not tried the wind up dog yet but the plane and tractor are definitely a hit. Of course, Jack's little snowman (a Christmas present from Uncle Noah) has remained hi!
s bed bud
dy and is handy for biting on and loving on and generally being pummelled but the snowman does not seem to mind. The snowman has been joined by a new friend, a soft cuddly Panda that our friends Cat, Don, and Teeter sent from South Carolina. This little panda is super soft and Jack had a ball alternating kisses on Panda and Snowman. Of course, we brought Jack's gears-you push a button, it lights up, plays music, and the gears spin. David brought a few more things from home that we are going to try today to shake things up. I'm kind of hoping that Jack might really learn to enjoy quiet activities more. David even brought the playdough and floam so maybe Jack will actually enjoy and not just tolerate playing with them. Oh yeah, we've also got a few of Jack's "roll a round" balls [the clear plastic balls with toys inside them]. He loves spinning those around and clacking them tohether. If you've got any other suggestions of things that can be played while lying in a level plane!
I'd love to hear them especially from those of you (HELLO THERAPISTS!!!) who know Jack's abilities and the kinds of things he needs to work on. Just drop me a line at firstname.lastname@example.org.
***Here's the latest news on our shunt status. The cultures from the shunt tap in the ER and the spinal fluid from the OR on Tuesday are growing staphylococcus aureus (the most common bacteria found in shunt infections). We are awaiting sensitivity studies to determine whether we are dealing with Methicillin Resistant (MRSA) strains. If the bacteria is sensitive to Penicillan (Methicillin) then Dr. Wellons will switch Jack's antibiotics to Penicillan. In the meantime , Jack continues to receive Vancomycin which is what he will stay on if the bacteria is MRSA. So far the culture taken from the OR on Wednesday and the culture taken from the drain in the room yesterday are negative. One of the residents will get a culture from the drain again tomorrow. Once two consecutive cultures are negative, Dr. Wellons will take Jack back to the OR and put in a new VP shunt. A final culture result takes 5 days so the Wednesday sample will be final Monday afternoon. Dr. Wellons said that he!
ve to wait until the second culture result is final. Once he gets one culture that is negative at its final 5 day point, he'll take the second culture remaining negative for a couple of days as an indication that the infection has cleared and it's time to replace the shunt. If the infection does not appear to be clearing up (so far that does not seem to be the case), Dr. Wellons will do some more extensive surgery to open up Jack's head and get the rest of that old subdural shunt out.
A few folks have asked whether the VP shunt has to be put back in. Unfortunately the answer to that question is an unequivocal absolutley! With the external drain currently in place, we know just how much extra cerebrospinal fluid Jack is making on a daily basis--it's a lot! If we don't put in a VP shunt, all this fluid will accumulate in his ventricles and they cannot drain or absorb the fluid fast enough, there will be pressure on his head causing who knows what damage and his head will continue to grow. As bad as this has been, it has definitely confirmed that we made the right decision regarding putting the VP shunt in in the first place.
We can feel your prayers and we still need them.
Also, thank you again to Edie, Dad (Opa), Steve (Pop), Michelle (Michi), Rob, Mandy and Andrew (The Mandy-Andy show), Donna, Nana, and Aunt Ninfa for coming to visit Jack here at the hospital (and bringing us food and stuff). It's so strange for us to be here at home where we have so much help and it's been awesome!
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