Saturday, January 22, 2011

Major Progress!

Hope has made some amazing progress in the last few weeks! A little over a week ago we went to U of M for Hope to have a feeding evaluation. Since Hope is on the ventilator, eating by mouth would require some extra coordination beyond what is typical. The vent is pushing constant air pressure into her throat and lungs and in order to protect her airway when she swallows Hope needs to put forth extra energy. Because of this the biggest concern for her eating by mouth while she is on the ventilator is the risk of her now swallowing properly and getting food/fluid into her lungs. At U of M we thought they were going to do a full swallow study but they didn't. Instead they dyed some plain water blue and gave Hope a small amount from a spoon. Afterward we suctioned her trach to make sure she didn't take it into her lungs. No blue came out so that was a great sign. Next they dyed some applesauce blue and gave hear a small amount from a spoon. Once again we suctioned and once again - no blue! Yay Hope! Because she did so well with these "unofficial" tests Hope was given permission to have a small amount of water and pureed foods by mouth each day. We will go back to U of M in February for an official swallow study and depending on how she does we will see how much she will be able to start eating by mouth.

That is vey exciting progress but it is nothing compared to the progress Hope made yesterday.

We had been waiting for some blood work to come back before we made any more progress on weaning the ventilator settings. The blood work came back this week and it was perfect! Onward with the vent wean! We got the email with the wean order yesterday morning and we were so happy and excited at what the next step was. Hope was going to be OFF the ventilator completely for 20-30 minutes twice a day!!!

Yesterday evening we tried it for the first time. We disconnected He and turned off the ventilator. We have gotten VERY accustomed to the sound of the ventilator just being part of our everyday sounds so when we turned it off the silence was very very eerie. Hope was tube and wire free for pretty much the first time in her life! It was so exciting.

Look - no tubes!!!

Running through the house - just because we can!

Yay Hope!!

Monday, January 3, 2011

Merry Christmas & Happy New Year!

Hope & Daddy seeing what santa left in Hope's stocking

Well the tree is down and the new year has been rung in. Hope had a great Christmas. She started out Christmas eve by going to visit her Great Grandma Anderson. The family all had lunch together and then great grandma opened her Christmas gifts. Afterward Hope headed to her Grandma and Grandpa Robinson's house where she opened her Christmas gifts. Hope wasn't interested in the oyster soup that grandma and grandpa were having so she took a nap while everyone had dinner. After dinner Hope went to church for the Christmas eve service. That was such a long day that Hope went straight to bed when she got home from church. (it was partly because she was so tired and partly because she was wanting Santa to visit her). Bright and early Christmas morning Hope woke up to find that Santa had visited her in the night. She enjoyed opening her presents much more this year than she did last year. Unfortunately Grandpa Robinson and Great Aunt Dawn were not feeling well so everyone couldn't get together for Christmas dinner like they had planned. Instead Grandma Robinson and Aunt Emily came down and had lunch with mommy, daddy and Hope.

Hope's ventilator weans are going very well. Hope is almost to the point of being on pressure support all the time that she is awake (where she has to initiate the breaths, the ventilator doesn't do it for her). We will be contacting the vent team at U of M soon to find out what the next step will be. Go Hope!!!