*Wednesday the 22nd of April 2015* Sabrina was able to pass her swallow study, She was able to take a drink of water and have ice chips for the first time in months, It was a huge goal she achieved and an amazing day for her and all of us.
*Monday the 18th of May 2015* Sabrina has surgery scheduled for her Stoma take down (Stoma Reversal) Her stoma is looking healthy and she has put on 18lbs since leaving the hospital in March, We got there early registered with surgery and had to wait 4 hours before Sabrina was taken back due to the surgery team running behind, Sabrina was in surgery for over 3 hours, They made an incision vertically on her abdomen following the same incision line as before when they operated on her,
There was a lot of scar tissue to cut through for the surgeons to reach her stoma,
They re-attached her intestines stitched her muscle and skin back together at the stoma site and abdomen, They for some reason changed her gastric tube out but when they pulled out the G-tube cannula they didn't put the new one in immediately like your suppose to do, They had to re-dialate the entry way to her stomach which makes the site very painful for Sabrina,
Sabrina was taken to the recovery room at around 8:30pm, Her parents were able to see her and be with her, She was in a lot of pain but doing well considering,
After she was stabilized she was taken to her room in the surgical unit of Primary Children's Hospital, She was in extreme pain and very exhausted.
*Tuesday the 19th of May 2015* Sabrina is in so much pain she is having trouble moving at all, All of her mid section,abdomen from her right side where her stoma was to the center where the long incision is to her left side where they changed out her G-tube cannula is so very sore and tender, They have her on a some what low dose PCA (patient controlled analgesia) of morphine and she can push the button every 10 minutes but its not nearly enough to control her pain, Very concerned about this her father talks with the nurse and eventually the surgical anesthesiologist about doing something for Sabrina, They agreed that she needed to have bolus (an extra dose) available every 2 hours as needed for her pain, this seemed to be working a bit better as Sabrina rested.
*Wednesday the 20th of May* Sabrina is still quite sore but she walks a couple times as well as getting out of bed to use the bathroom which she had been doing all along, She is so brave and strong willed, She is swollen in her face (edema) due to all the IV fluids they are giving her which has her parent's concerned and watching closely, Overall she does a bit better today.
*Thursday the 21st of May 2015* Sabrina is feeling a bit better and walks a few times although still very sore, Her edema has gotten better and she is not quite as swollen as before, We have been worried and waiting for her intestines to wake up to see if the surgery is a success and right before bedtime when Sabrina is using the bathroom for the last time tonight her intestine are awake , She has a bowel movement and it is such a wonderful moment as we all now know the success of this major surgery, There were tears and laughter and much happiness tonight.
*Friday the 22nd of May 2015* Sabrina is getting better and feeling better she is having normal bowel movements and her pain is better controlled as we are able to give her oxycodone through her G-tube (oral meds work and last longer) We have been talking to the Doctor about winging her off of her ventilator because she is breathing over it and possibly does not need it anymore, The Trach site is trying to close and doing the Trach changes are tough and very scary as well as painful for Sabrina, So they turned down her breaths per minute rate from 20 to 16 and hooked a CO2 monitor to her trach to monitor her blood gasses, She did great over night and they did a blood gas by pricking her finger and testing it in the lab, All was normal.
*Saturday the 23rd of May 2015* Sabrina is doing really well, Her pain control is much better and she is smiling today, The Doctor is winging more on the vent today, Taking the breaths per minute given by the ventilator from 16 to 8, With the CO2 monitor still in place they will monitor her over night, More good news today it looks like Sabrina and her family are going home tomorrow.
*Sunday the 24th of May 2015* Sabrina is worried about having her stomach ties(there like boondoggle ties/stitches on her site where her stoma was) and her IV in her wrist pulled out, She doesn't like having the tape pulled off her skin and the IV being pulled out she gets really worked up about this understandably,
She was brave and strong and did very well as usual, She also did great with the vent settings lowered to 8 bpm and a plan is being put in place to wing her off of the vent completely and De-cannulate her from the Trach completely, Sabrina is truly an amazing young lady, She has been through so many incredible surgeries and procedures and she stays strong,brave,courageous and so resilient, She is still so kind and caring too everyone around her, She amazes us all and we Love her more than words could ever say.
*In July of 2015* Sabrina was able to wing herself off of the ventilator against all odds of what the doctors had been telling her, We were able to have her Trach removed by an ear,nose and throat specialist, What a glorious day for Sweet Sabrina she was thrilled to finally be free of the Trach.
* Currently in 2017* Sabrina still has her Gastric tube in her stomach feeding her a Formula full of the nutrition her body needs, She is able to eat her favorite foods in moderation as well, She takes a pharmaceutical grade Probiotic regimen a great fiber prebiotic regimen and all the essential Vitamins and minerals her body needs, Sabrina is doing really good and is as active as she can be, She is drawing her own creative Anime characters on her computer and putting awesome fictional picture stories together, She plays games with her brother, Perhaps her favorite time of the day is when she has her earplugs in listening to her Favorite music while getting some exercise swinging on her big custom swing set.
*** November 5th 2017*** Sabrina and her family were able to go see and meet her favorite band in the world "SKILLET" for her 18th Birthday gift thanks to the wonderful people at Q Management Corp, A special thank you to Micaela Miller for your kindness, John, Korey, Jen, Seth of Skillet and their stage manager Kyle were so very kind to us and gracious with their time backstage before the show, Sabrina was full of joy and excitement and she said it was the best night of her life, Thank you SKILLET !!! for being such a class act, God Bless.
*Monday the 18th of May 2015* Sabrina has surgery scheduled for her Stoma take down (Stoma Reversal) Her stoma is looking healthy and she has put on 18lbs since leaving the hospital in March, We got there early registered with surgery and had to wait 4 hours before Sabrina was taken back due to the surgery team running behind, Sabrina was in surgery for over 3 hours, They made an incision vertically on her abdomen following the same incision line as before when they operated on her,
There was a lot of scar tissue to cut through for the surgeons to reach her stoma,
They re-attached her intestines stitched her muscle and skin back together at the stoma site and abdomen, They for some reason changed her gastric tube out but when they pulled out the G-tube cannula they didn't put the new one in immediately like your suppose to do, They had to re-dialate the entry way to her stomach which makes the site very painful for Sabrina,
Sabrina was taken to the recovery room at around 8:30pm, Her parents were able to see her and be with her, She was in a lot of pain but doing well considering,
After she was stabilized she was taken to her room in the surgical unit of Primary Children's Hospital, She was in extreme pain and very exhausted.
*Tuesday the 19th of May 2015* Sabrina is in so much pain she is having trouble moving at all, All of her mid section,abdomen from her right side where her stoma was to the center where the long incision is to her left side where they changed out her G-tube cannula is so very sore and tender, They have her on a some what low dose PCA (patient controlled analgesia) of morphine and she can push the button every 10 minutes but its not nearly enough to control her pain, Very concerned about this her father talks with the nurse and eventually the surgical anesthesiologist about doing something for Sabrina, They agreed that she needed to have bolus (an extra dose) available every 2 hours as needed for her pain, this seemed to be working a bit better as Sabrina rested.
*Wednesday the 20th of May* Sabrina is still quite sore but she walks a couple times as well as getting out of bed to use the bathroom which she had been doing all along, She is so brave and strong willed, She is swollen in her face (edema) due to all the IV fluids they are giving her which has her parent's concerned and watching closely, Overall she does a bit better today.
*Thursday the 21st of May 2015* Sabrina is feeling a bit better and walks a few times although still very sore, Her edema has gotten better and she is not quite as swollen as before, We have been worried and waiting for her intestines to wake up to see if the surgery is a success and right before bedtime when Sabrina is using the bathroom for the last time tonight her intestine are awake , She has a bowel movement and it is such a wonderful moment as we all now know the success of this major surgery, There were tears and laughter and much happiness tonight.
*Friday the 22nd of May 2015* Sabrina is getting better and feeling better she is having normal bowel movements and her pain is better controlled as we are able to give her oxycodone through her G-tube (oral meds work and last longer) We have been talking to the Doctor about winging her off of her ventilator because she is breathing over it and possibly does not need it anymore, The Trach site is trying to close and doing the Trach changes are tough and very scary as well as painful for Sabrina, So they turned down her breaths per minute rate from 20 to 16 and hooked a CO2 monitor to her trach to monitor her blood gasses, She did great over night and they did a blood gas by pricking her finger and testing it in the lab, All was normal.
*Saturday the 23rd of May 2015* Sabrina is doing really well, Her pain control is much better and she is smiling today, The Doctor is winging more on the vent today, Taking the breaths per minute given by the ventilator from 16 to 8, With the CO2 monitor still in place they will monitor her over night, More good news today it looks like Sabrina and her family are going home tomorrow.
*Sunday the 24th of May 2015* Sabrina is worried about having her stomach ties(there like boondoggle ties/stitches on her site where her stoma was) and her IV in her wrist pulled out, She doesn't like having the tape pulled off her skin and the IV being pulled out she gets really worked up about this understandably,
She was brave and strong and did very well as usual, She also did great with the vent settings lowered to 8 bpm and a plan is being put in place to wing her off of the vent completely and De-cannulate her from the Trach completely, Sabrina is truly an amazing young lady, She has been through so many incredible surgeries and procedures and she stays strong,brave,courageous and so resilient, She is still so kind and caring too everyone around her, She amazes us all and we Love her more than words could ever say.
*In July of 2015* Sabrina was able to wing herself off of the ventilator against all odds of what the doctors had been telling her, We were able to have her Trach removed by an ear,nose and throat specialist, What a glorious day for Sweet Sabrina she was thrilled to finally be free of the Trach.
* Currently in 2017* Sabrina still has her Gastric tube in her stomach feeding her a Formula full of the nutrition her body needs, She is able to eat her favorite foods in moderation as well, She takes a pharmaceutical grade Probiotic regimen a great fiber prebiotic regimen and all the essential Vitamins and minerals her body needs, Sabrina is doing really good and is as active as she can be, She is drawing her own creative Anime characters on her computer and putting awesome fictional picture stories together, She plays games with her brother, Perhaps her favorite time of the day is when she has her earplugs in listening to her Favorite music while getting some exercise swinging on her big custom swing set.
*** November 5th 2017*** Sabrina and her family were able to go see and meet her favorite band in the world "SKILLET" for her 18th Birthday gift thanks to the wonderful people at Q Management Corp, A special thank you to Micaela Miller for your kindness, John, Korey, Jen, Seth of Skillet and their stage manager Kyle were so very kind to us and gracious with their time backstage before the show, Sabrina was full of joy and excitement and she said it was the best night of her life, Thank you SKILLET !!! for being such a class act, God Bless.
