After a very long day of waiting and soothing, and waiting and soothing, and soothing and soothing some more Lucy is now a not so happy owner of a GJ tube. Her new hardware is…well…BIG! I was hoping that her new tube would be a little bit smaller than her PEG, it’s not. It is more flexible, but it’s longer and heavier, and has a very large W port on the end. I know that it is new and we need some time to adjust to it, but it is bigger than I thought it was going to be.
Interventional radiology was naturally behind schedule today. As a result, we had to start an IV of D10 because of Lucy’s fasting restrictions. Somehow I knew when I scheduled this appointment that she was going to end up with an IV, even though they told me it is not necessary for the procedure, they could push all the sedation meds through her g-tube. After getting her started on IV fluids, it was another hour before she was taken back for her procedure. Needless to say, we were relieved that they had started her on fluids. It was very difficult handing her over to the nurses to take her back. It is one of the most difficult moments for us as parents to see our baby girl so sad and scarred and not being able to comfort her. They gave her Versed and Motrin for the procedure. They commented afterwards that she has a very high tolerance and may need a little more Versed than recommended for the next time. They called me back to the sedation room immediately after her procedure was over because she was so distraught. I’m not sure who was happier to see me, Lucy or the team of nurses and doctors trying to calm her. The team was extremely compassionate and did an wonderful job of getting us out of there as soon as she was cleared to go home. We left with Lucy’s hospital gown still on her. Her nurse did not want to do anything more to upset Lucy than was absolutely necessary, we could all appreciate that!
It is getting increasingly difficult to have any procedures done to Lucy! She is extremely aware of the hospital environment and all that goes on inside of it. She is our hero, she has learned strategies for coping that amaze us! I am not sure the pain and frustration of placing this new tube is going to be worth the few extra ounces that could be gained by feeding through the J-tube. Time will tell, as for now I am happy that we do not have to do this again for another three months.
We want to say a HUGE thank you to Beth and Alicia for once again taking care of our kids like they are your own. We could not do all that we have to do without your support. Alicia, thanks for the bottle of wine, you can blame any typos in this post on that:)
Thanks again for all of your thoughts and prayers.
P.S. I was not able to take any pictures of her new tube as she was wrapped to my body most of the day. I’ll try tomorrow.