Post-op pictures

Spine Surgery

Sorry that it has taken me til now to update, but it has been a very rough couple of days.  We arrived at same day surgery yesterday morning at 530am, we were fortunate to meet with the entire team before surgery including Dr Crawford, Dr Jayne, and the entire anisthesia team, nursing team, and pain team.  I went with her into the enduction room and held her (she wanted to hold her own mask with strawberry air), I laid her on the bed as I kissed her cheek they were all very supportive and assuring me they had kids of their own and they would take care of my baby girl.  Her monkey stayed with her as always and I went out.  They called me at the waiting area and told me they were beginning surgery at 922am.  The proceedure lasted 4 hours and all went wonderful.  Dr Crawford and Dr Jayne met with me and was very impressed by how it all went. They were able to correct to a 0%..........She had no surgery issues as her heart, lungs, blood pressure and all went beautiful.  They did intibate but not the traditional type (used micro laser with a scope). Ortho was releasing her to go to the pac unit, but just to be on the safe side I agreed with anisthesia to keep her in nicu over night to be sure of the pain management.  By 230-300pm Kendra was sitting up trying to play with Kiristen.  She tolerated liquids jello and by 900pm was eating her vanilla wafers!!  She had a pretty good night as we increased her pain pump from 3meg to 4 just so that I could reposition her and control her spasms with alittle more ease.  Her and Kiristen are having it rough as they only allowed Kiristen to see her for a few minutes yesterday.  This morning has gone well, they have removed the continuious pain meds (now on orals), and only has one iv left (just in case).  She still does not want to be moved and tried to bite the nurse to let her know!!!  The blue gloves arent allowed they had to get white ones as she gets freaked out really bad when she sees them coming.  We just moved about an hour ago to A3, and they said Kiristen is welcome here to assist with kendra's rehab!!!!!  Dr Crawford has Kendra on a move at will order, so today we will be encourageing her to get in a chair and move what can be tolerated.  She is continueing antibiotics, and is still running a midgrade post surgery temp, but no issues.  She ate a couple bites of bacon this morning but not going to really work hard on solids til later this evening when the meds are alittle more out of her system.  They will be in anytime to cast her for her brace, and she gets to pick the color (I am sure pink will be her color of choice!).  I will update again as more comes up.  Here is a couple of pictures taken yesterday right after surgery when they let Kiristen in.  Thanks  God is good..  And Thank you Daddy as I knew that this day was your birthday and you would be with us all the way. 

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...