September 14, 2013

No vent nap!

  Originally our plan was to come to Victoria General Hospital on September 22nd to have Hannahs trach leak checked, have a sleep study done, check her pulmonary hypertension and meet with the cardiologist. We were going to take wheels for wellness for the first time to get here and were hopefully going to be here for about a week.
  Yesterday (September 13th) Hannahs jtube fell out because the balloon in the tube was no longer holding water. EVERY time the jtube falls out it has to be put back in by a radiologist and has to be done at Victoria or children's hospital. Because Hannah needs to be sedated for the procedure she needs to be at a hospital that can take care of her airway. So we went to the local hospital who then sent us by ambulance to Victoria general.
  We got here (Victoria general) at 9:30pm, the doctor didn't come in last night because Hannah looked good. The doctor instead of giving the nurses directions to so stat an IV to keep her hydrated until the jtube could be put back in, gave the nurses direction to start running pedialite through the foley catheter!!! It ran all night at 40mls an hour and never puked, so today its running at 50mls an hour. Next they are going to run half pedialite half formula at 50mls/hr, then all formula and then try to increase it from there.. sending us home with a gtube (if all goes good)! Very very exciting.
   Today we also trialed Hannag off the ventilator while she napped! At first it wasn't looking good... We had her flat on her back with the trach cuff deflated and she was ringing off between 85-93. So we put her back on the vent, inflated the cuff and lifted the head of the bed. 20 minutes after we put her back on the vent we took it back off and she did amazing! Maybe she wasn't use to having a belly full of fluids and laying flat on her back or maybe she needed her cuff inflated, but fingers crossed she keeps doing good off the ventilator during naps.


  1. Great news on all fronts...that j-tube falling out just may have been a blessing in disguise. Fingers crossed on all fronts!

  2. Im glad things seem to be going really well! i hope for the best for you and your family! =) Thanks for the update =)

  3. And you answered the question in the blog post hoping all contiues to go well and g-tube is a go since it makes life so much easier (except when the stomach flu hits but it is managable)