More forward progress...time off of the vent.

Samantha continues to make some improvements while in the hospital. She had a swallow study this past week and did really well with soft foods and thickened liquids.  She aspirated (and coughed back out) a trace amount of thin liquid when she took a big swallow.   For now we can have her eat most things if she is interested (with the exception of thin liquids). She can still have thin liquids from a spoon in very tiny amounts--just not big swallow. Of course, it seems the novelty of food has worn off and she seems content with her g-tube feedings for most of her intake. We are happy that she CAN eat if she wants something. And, we are so proud of her for being so agreeable during the swallow study.  Samantha really hammed it up and seemed happy to be there.  It helped that we had an entire room full of people cheering for her after every bite/sip.

Her speech continues to improve and each day she spends time standing and cruising. She is still way too shaky to take independent steps, but we are really happy with her physical progress.

Yesterday we had a scare with her g-tube. It popped out during a feed and formula started pouring out of her belly.  Yikes.  I was laying in bed next to her and when I went to get up somehow pulled on the line and it came right out.  I was horrified as it isn't a very "old" g-tube, only 5 weeks or so.  The nurses claimed it wasn't my fault as the balloon looked really mangled.  They reported the incident to the manufacturer.   However, my mommy guilt kicked into overgear and I felt really bad about it.  They were able to get a new tube in, but that's probably not the best way to do the first g-tube change.  So far the new g-tube seems just fine, thankfully.  As surgery is technically supposed to do the first g-tube change, I am hopeful they will come by at some point to take a look.

Last night for the first time Sam did a "sprint" off of her vent for about 40 minutes!  We were going to try for an hour but felt that after 40 minutes she seemed a little tired and winded.  Plus, her coloring didn't look as good. However, she didn't desat and her heart rate stayed about the same.  All in all it was a very good first try, and we are happy.  We probably pushed a little too hard as we were letting her stand up and play for the first 30 minutes.  For the next few days if we think she is ready we are only going to try for 30 minutes and see how she does.  Also, the team is going to monitor her weight very carefully and if she doesn't gain or actually loses weight we may back off of the sprints for now.  We will go slow and always have the option of cutting back.  In any case, it is very comforting to know that she can spend SOME time off of the vent.  We will take it, as always, day by day and adjust as needed.

Val and I did our third trach change this morning and all went well. Samantha doesn't really like them, but she tries her best.  We are shooting for discharge at the end of April and are very, very excited to be so close to going home.  It's been such a long admission, and as Samantha gets stronger she seems less able to sleep in all of the chaos that is the hospital.  Hopefully these next few weeks will go quickly.

Here is a cell phone pic a friend took of Samantha last Sunday. Sammy was demonstrating how to wash her hands. That's my girl!





Until next time,

Monica