Day 3 Pre-op

It has been a cold dreary day here in Cincinnati, and as I just looked out the window of our hotel there is a blanket of snow on the grass and trees.  Our appointments today seemed easy and quick.  Kendra saw Dr Rutter with ENT (we are return patients of his), he is planning on replacing the tubes in Kendras ears during her surgery in April.  He was pleased that her tonsils and abnoids werent bothering her and her snoring is at a minimum at this point but wants to continue watching them.  The home health team called me between appointments as our oximeter was blank!!!!  So we are doing the sleep study again tonight and he turned the alarms out of sleep mode so that I can moniter them.  We were happy to get to see Laurie Bailey and Lisa Berry in Genetics today as it had been a long time and they enjoyed playing with Kendra and felt her interaction with them was marvelous, not the shy clingly child they saw over a year ago.  Dr Leslie was impressed and glowed with Kendras achievements.  She was shocked to Kendras eating habits, and the way she did not feel threatened by her (she wanted to tell Audrey and Terry to keep up the great work) school has done wonders with her interaction with other children and security issues we had dealt with in the past!!! Way to go team......
Over all Kendra's labs were good.......her liver profile was alittle elevated but in the same range as it has been running and no worries there.  Transplant on the other hand has dropped again unfortunately.  September when we did our last level she was 41% and today the reading was 37.5%.  At this point we are waiting to see her urine GAG levels but as long as she is within the scale all will still be good.  As Stella says we will continue to watch with an eagle eye....Hurler's children (although we hope for) does not require 100%, it all depends upon the amount of enzyme that the donor cells produce and how well they function.  We did discuss-as they want me to keep an open mind the options for the future as far as enzyme replacement and a second transplant--but those would all be down the road decisions but things that we keep somewhere in our minds daily.  All of the what-ifs!!
Kendra met a new friend today while we were in the waiting room, a little girl who was just beautiful.  She was four years old and half of Kendras size.  There were alot of resemblances but she had a different syndrome that us.  They walked around holding hands for over an hour.  I so wished I had taken pictures for my own memories because they were beautiful. 
We have to be at radiology at 7:00am for her sedated ct scan, and then return her monitor to home health tomorrow.  I will try to update before we head home depending upon how well she is functioning after we get back to the hotel. 

Day 1 and 2 pre-op

first of all it has been a long couple of days.  sorry that I didnot get this started earlier but we have been very busy.  Yesterday was Day 1 of Kendras tests for surgery and all went really well.  We started with labs drawn at A-5 Hemoc-onc.  We were able to see Anna and Rich from BMT!!  Dr Wallace is on his 10 days off but told them to hug Kendra for us!!  They had to stick Kendra twice because of an accident and the nurse spilled a whole tube.  We then went to Ortho where we had three new x-rays and met with Dr Jayne and Dr Crawford.  They seemed very confident about Kendras upcoming proceedure and look for "nothing less than the one they did last week" (due to hippa they didnt mention names but we know who they are talking about right Elizabeth??  LOL  Kendras current curvature is 55degrees (on the bolus) sorry for my spelling.  Kendra was aggitated and did not cooperate very well as they tried to do some measureing and weights but they were happy with what they had. Dr Jayne added an appointment for this week to have a sedated CT scan to measure for her rods and screws.   We finally proceeded to Cardio with Dr Kimball where we waited 3 hours before they even did her EKG.  When the Dr came in he was quick as he had just seen her in September and said everything still looks great and her micro-valve and PDA was unchanged and he felt we would never have issues with them from the earlier tests.  SOUNDS GREAT!! Finally we were able to make it back to the room about 6:30pm and Kendra and I was done.  She had only  had snacks since breakfast and had no nap, she was not friendly and very clingy!  Today Wednesday we started the day NPO after 6AM in anticipation of her CT AT 2:00, our first appointment was 8:30am with Pulmonology (a new field for us), they were pleased although they scheduled us with home health to do an overnight study on oxygen saturation.  They assured me that this is a precaution to give them a better idea of her breathing under sedation.  We then proceeded to anesthesia where we pre-registered and voiced past experiences Kendra has had with sedation, intubation, and pain management.  We proceeded to radiology where they informed me they were running behind and it would be approximately 4:00 before they could take us in and I made them resecedule for Friday at 7:00am.  After the long trip up on Monday and the very long day at the hospital Tuesday Kendra could not handle another day with all the stress, no rest or meals.  She was very agitated and needed to relax and rest (she was very glad to get back to the room and strip and eat the cabinets bare!!!)  I did get the chance to briefly talk with Elizabeth and Bella.  She looks marvelous and is a inspiration to me.  Tomorrow is a much shorter day and I plan on a visit.  Michelle was off today and I will have Kendras labs tomorrow and will post them with her update.  Please be patient I know the page is bare right now but I am learning to do this and have alot of stuff to add.  If anyone wants to help I would appreciate it.  Missing home, family and friends as I called home and Kiristen cried asking me to come home she missed me so :(   xooxooxoo