Dear No Day Bottle Kids --

It is hard to believe that you both are just growing, eating, having fun, and do not miss your morning and afternoon bottles.  You continue to enjoy swinging and we are now spinning you around, William, in our arms (this is supposed to help with the vestibular stimulation).  Your sister loves this activity as well!

Nancy V visited with us Thursday night.  She looks great, even with a broken toe. Harry did a good job avoiding it as did Nancy with protecting it from you both crawling/walking around.  You both played very hard, laughed, and crashed quickly.  Off to bed and then Mommy, Dada and Nancy enjoyed dinner together.  It was very relaxing and we hope to see Nancy again soon.  

We learned that you, William, are positive for IgG beta2 glycoprotein which is part of a panel for anticardiolipin antibodies (from the thrombotic risk panel because of the Leiden).  Dr Rossi says that this positive test is strange as mostly adolescent girls are positive for this test. Dada did some online research and we learned that this test is very sensitive to a variety of factors.  You will be retested in eight weeks for confirmation.  At Dr Rossi's recommendation, we went ahead with the portacath surgery Friday.  We arrived at Maine Med before 8am to admitting and did paperwork, then we went to the Barbara Bush Children's Hospital (BBCH) on the sixth floor.  You had the room closest to the floor door (always a good sign that we would come home soon).  After getting your hand IV upon arrival, we went into your room.  We were able to give you one final bottle of mostly water and a little apple juice, then you received roughly 500 IU of Hexilate.  Then you napped and then unfortunately we had to wake you for a blood draw, to ensure that your Factor VIII was high enough before surgery.  It came back at 77%, pretty good for a normal Joe but they wanted it higher so you received another roughly 250 IU and off, with Dada on the gurney, to the room outside of the operating room and guess what -- we waited, waited, waited.  You were quite hungry and wanted to sleep, then the fun began -- we signed releases and you had a kiddie cocktail.  We loved hearing you laugh and giggle and then Dada walked you into the operating room.  We gobbled a bit of lunch and then up to the waiting room.  About 90 minutes later, Dr Curci came to get us, said you did very well (which meant he did very well too), and shortly, you woke up and announced you were hungry.  The post-OR nurse insisted on Pedialyte so you had that first, then apple juice and back up to your room.  Mommy gave you strawberries, blueberries, and milk for lunch and you kept it down,  You snoozed and Mommy went to the ninth floor, to visit with a couple of friends who were visiting a good friend who is sick.  

After Grace woke up from her nap at home, she came for a visit and you had dinner together.  You know, the good stuff from home, chicken fingers, strawberries, blueberries, sweet potatoes, milk, and of course, Puffs!  Both Elizabeth and  Natasha came by for a visit -- thank goodness Elizabeth brought your crib pads and sleeping CD and we are thankful Natasha could stay late and bring Grace by.  We think you two missed each other.  William, you did not seem to be having discomfort from the surgery site.  At bedtime and during the overnight, we gave you liquid Tylenol just in case you needed it.  At 10pm, Connie, your nurse, flushed your hand IV with heparin and then you received another roughly 500 IU of Hexilate.  You woke up then and a few other times because you received normal saline in your port for electrolytes so we changed your diaper a few times.  Mommy stayed in your room and we slept and awoke with every noise we could not block.  Finally about 3am, Mommy took you in her bed to snooze and all seemed well ... until 7am and guess what, no waiting but a blood draw.  Mommy forgot the Emla cream and the blood sucker (affectionately written) struggled with getting enough blood.  The Factor VIII draw needs to be 6ml and your veins did not want to give up so much so off we went, with Dr Craig's help (delaying the draw one hour), to have breakfast -- two scrambled eggs, a banana, berries, string cheese, and milk -- and enough time for the Emla cream to work.  Then Tori found a vein that gave almost what was needed and the lab accepted it -- yea!  With your level at 29% ten hours after the last factor infusion, Sherrill gave you one more infusion in the Step 2 car on loan from the atrium and off we went home to see Grace and Elizabeth who was here manning the fort.  

We all enjoyed lunch out and ran a few errands Saturday after naps and then Saturday night we forgot to give you, William, your bedtime bottle with all the activities.  Grace, you never forget your bottle!  All is good because now you both share a Step 2 car -- we drive you around the day nursery.  You bang on it for more, more, more.  Oh the fun when you can speak in complete words!

We met Amy, RN, who is your at-home IV therapy nurse, William.  She is teaching us how to infuse SASH -- saline, antigen (including mixing the Hexilate and saline to make "factor"), saline (to push the factor into your body), and heparin (to keep the clots away at the port entrance) into your port access -- and of course, lots of handwashing and alcohol wipes.  Saturday night was the first visit with Amy and you were tired (so was Grace) so we quickly infused and then off to bed (Grace said hello to Amy and she went to bed before the infusion was complete).  She came back Sunday morning and we learned more -- so much so that we did the Sunday night infusion by ourselves.  

We appreciate our friends and family who prayed for all of us and William's quick recovery!  In turn, we are praying for Mrs Rocha and RZ -- we want both of these woman to get as better as they can very soon.  Grace and William send their love and hugs!

To our sweeties,

Mommy and Dada

Plan of treatment for port placement per Glen Roy (Hemophilia RN):

• Helixate FS 500 units around 10:30 AM on day of surgery (Friday)
  
• fVIII level one hour post infusion of the 10:30 AM dose to make sure fVIII level is in a safe range for surgery( target for 100%)
  
• Helixate FS 500 units every 12 hours from the 10:30 AM dose for 72 hours /3 days and then daily for 4 more days.
  
• Nurses on the Barbara Bush Units will start to show you how to infuse port while William is in the hospital and then a nurse from Critical Care Systems will go to your home and help you with the infusions until you feel comfortable doing them on your own and they will return for the final dose and de-acess the needle known as a gripper huber needle from the port.     Remember the port will be accessed with the huber needle in the OR and left accessed till all the doses of factor have been infused.

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