Sunday, June 27, 2010


We took Rylee to the special care clinic and to her pre-op appointment on Wednesday and she finally hit the 20 pound mark. She weighed in at 20 lb 4 oz. Nothing was changed with her feedings or meds and they are really happy with her growth during these past few weeks. We have been giving her extra pediasure just trying to get her to gain wait. She still isn't eating by mouth very well and is doing a little better with her thickened liquids. Jordan made a trip with to the doctor on Tuesday with daddy as she had a rash all over her body. The doctor didn't seem too worried and thought it was related to whatever virus or infection she had going on. Troy went back to Sedan, Ks this weekend and I had the girls to myself. I even took them to Burlington to celebrate my nephew's second birthday. It was a lot of work and it felt good to be able to load them up and take them out all by myself. We don't usually take Rylee out without two people in the vehicle as she needs constant suctioning and we had to make sure she didn't pull her trach out. Since she is capped she doesn't need suctioning as much and now she has an open airway so if she did pull her trach she would be alright for a few minutes. She had me a bit worried on Friday night as she was only satting 91% and didn't tolerate her cap once she went to sleep. I think it was just her telling us to give her a break as she seems to be doing much better. I was freaking out thinking her reconstructed airway might have been collapsing or there might be some scar tissue forming. We are scheduled for her bronch on Thursday and if all looks well we are sure she will be decannulated (trach removed). We will spend one night for sure in the hospital and then if all is well we will be sent home trach free! I have been looking forward to this day since the day she got her trach. We are very anxious for Thursday and we will keep everyone posted on her progress. I didn't get too many pictures this week. I will have to post some naked neck pictures next week.

1 comment:

  1. Many thoughts going out towards your family! I also live near the Kansas City area, my 20 month old had a rash all over his body a couple of weeks ago, dr called it the echo 5 virus... thankfully it's all cleared up! Good luck on Thursday!