We started off the day thinking we were going to get a NG tube put down Ella's nose in order to be able to get some food in her stomach. We only ended up with petechiae!!! We haven't seen petechiae hardly at all since before Ella was diagnosed. For those not familiar with the term, petechiae are little red spots that show up when your platelets are low and there is strain in your body such as from crying. As luck would have it, Ella's platelets are quite low just due to her counts dropping and she was crying hysterically while we tried to do the NG tube. Ever since starting treatment, Ella's platelets hold very well other than when her counts are low and I guess she hasn't had any reason to cry so hard during any of the previous rounds when her counts were this low. So, although there is no reason for concern at all at the sight of these pesky petechiae, it still is no fun to see it on her face. You may have to enlarge the pictures to be able to see it very well.
As for the failure of the NG tube, as soon as we had her lay down on the table and held her down, she started crying pretty good, then as they quickly placed the tube in her nose and pushed it down her throat into her stomach, she went hysterical. With her having tiny passageways to begin with, once she started crying, things got real tight and they had a hard time getting all the way to her stomach. Then it would kind of push itself back up as she gagged and cried. They tried it twice and then said that's enough!!
Today has just been kind of a rough day all the way around. It seems like ever since we tried to do the NG tube, she has been grumpy off and on. Oh well, tomorrow is a new day. However, we may try the NG tube again tomorrow using some heavier sedation so that they can at least get it placed correctly. Standby for that outcome!!
As for mommy, I am feeling a little bit weary!! Tonight I had to miss Emma's playoff soccer game and it is times that this that it sucks to be stuck here at the hospital. I just look forward to being able to take care of my whole family in the same place again!!
The end of the 2017-2018 School Year
4 weeks ago