Post-ENT Surgery

Well another surprise.  We arrived at CCHMC at 9:15am as scheduled and registered.  They took us to the back and started vitals, anesthesia came in and questioned why we would be spending the night inpatient.  I told them that I had been asking the same question.  Well to make it short the scheduling nurse had an error in the plans.  Dr. Rutter wanted us to come home today!!!!  I carried Kendra to the induction room, and held her as well as the mask which pushed her strawberry flavored gas to put her to sleep.  Needless to say she had not been real happy since our arrival this morning and continued to fight me and them.  Once she was asleep I laid her on the bed, kissed her cheek and they pushed her into the next room.  By the time I made it to the waiting room and sat down they called my name (SHE WAS DONE)!!!!  Dr Rutter came out gave me ear drops, and said he would see me between 2 and 8 weeks when ever Kendra had time with her upcoming schedule.  He assured me they wouldnt last even though he used the best ones because of her ear shape.  And when ever I was ready we would discuss her tonsils and abnoids but they were not pressing.  So we agreed to leave well enough alone for now since she was not having any real issues with them.  She was awake and screaming for mommy, home, and NO DOCTOR!  I could barely get her dressed and out of there quick enough.  We are now home, and she is playing as usual.  I will post some photos later tonight.....God Bless

Our Arrival

We have made it to Cincinnati with no issues.  And we do have cell service where the service has been out in Alderson since Friday at 9:00am.  So if you have been trying to call now my phone works.  We have to be at same day surgery at 9:15am for a OR SCHEDULE of 10:45.  Will update then  God Bless

One Week......

Today we have been home for one week and I need to catch up.  Things have changed since we got home.  But first the good stuff.  Kendra's GAG levels came back as "appropriate and stable" as labled by Dr. Leslie in genetics.  Her score was 17!!!  They want her to remain below 30.  Now surgery........ We are having Kendra's pre-op physical done Saturday here at home as the plans for putting her tubes in at the same time of her spine surgery in April have changed.  Dr C and Dr Jayne have ruled that combinding the surgeries would be to dangerous as a risk of spreading an infection from her ears to the spine and hardward.  But the ears have to be done 3 weeks prior to any spine surgery!!!  Yep you guessed it Cincy here we come.  We will leave Sunday for her surgery Monday morning.  Our time is 914am report to surgery and proceedure to begin by 1045.  She will remain inpatient over night and as long as all goes well we will come home Tuesday afternoon.  I promise to fix this page and get the other pages added as soon as I can.  God Bless :)

West Virginia

Kendra and I made it home about 4:30PM yesterday.  Sorry I was very tired and just tried to relax and catch up with Kiristen.  This trip was very hard on her as it had been a long time since she had been away from us for this long. (During Transplant Kiristen was only away from me one week).  Kendra tolerated the traveling alot better than usual,  and I was pleased with that.  I am still waiting on her GAG levels, but Dr. Davies did call me on the way home yesterday and had reminded me that as long as Kendras little boy cells remained in the area they are in we were ok, she would have to drop to 10% AND her GAGS be rising to initiate any ERT or a second transplant.  So we will continue to pray and moving forward with our other issues.  She did caution me as to not let Kendra get sick between now and April as it could delay her surgery and put us behind.  We will now be able to finally get the Chicken Pox vaccine and Michelle will contact Jill here at home for our Pre-Op physical and to get that vaccine taken care of.  Will update soon and check back periodically as I am working on changes to the blog and some photos too.  God Bless

Day 5

Well Kendra never ceases to amaze me, and as usual today was no exception.  We were scheduled for a sedated CT, I just assumed general anesthesia as we always do.  We arrived at radiology about 6:45AM and went straight in.  After all the routine stuff the nurse proceeded to ask me about where we were staying and how they could reach me tonight to check on Kendra........ I told her the number would be the same but we would be back in WV by tonight.  She said we had to stay here over night as they were not using general anesthesia but sedation!! No gas just IV and it takes 4-5 hours for them to wake up and no traveling for 24 hours.  She recommended that we try it with Kendra awake......We got a tinkerbell movie and illustrated the scanner on her monkey (lol) and she did it!!!! I held her arms up and she laid still as I have ever seen!!! thank you god!  We were back in the room by 8:30am, just finished breakfast and almost done packing.  Will be on our way to WV shortly......:)
Will update when we receive the rest of our labs and our pre surgery physical back home with Jill...

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