I came to Cleveland on Monday evening very late since Nick had his own quarterly doctors appointment at Children’s today. He had great numbers on everything. He blows pfts in the 111 range (probably a lot better than I would do!). Since I got in so late I did not visit Alicia until Tuesday. On Tuesday she was quite restless. She could not get comfortable since everything hurt. Her stomach hurts, she cannot speak yet, her legs are quite puffy and she has “foot drop” in her feet. She is getting some PT for her legs and feet but the right foot in particular is impossible for her to move. She had an MRI the other day and it was negative so we feel it’s an issue of not moving much (really laying flat this entire month). To make her more uncomfotable though she has to wear stiff boots to hold her feet straight up. These are very uncomfortable and she is constantly telling me to take them off. To top off the day she had to get a pic line since they had taken out her port during surgery. The pic line nurse was amazing and got it on the first try! This was not done without Alicia going thru some pain but we were relieved she got it! I had even warned the pic nurse Alicia would be very hard to poke since her veins are tiny and they roll. Apparently pic lines are the only job that particular nurse does all day! After Alicia’s pain meds kicked in she was able to sleep all night!
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On Wednesday the doctors restarted her tube feeds since they were stopped due to stomach pain. She really was restless again today. She wants to eat, drink, talk, and basically be out of all this pain. The doctors stopped her pain pump so she would not sleep all day. That really didn’t work since she slept most of the day! She was in the chair for an hour today and did ask for her kindle. She still really does not want her phone. At this point it is a little too much for her to comprehend since she is more alert and in a lot of pain. Her stomach still hurts but seemed better so the doctors felt good about starting her feeds and she indicated that she was hungry. She still has two chest tubes that continue to drain. Her stomach hurts and the boots on her feet are really bothering her. Once she has been successful in restarting the tube feeds she should be moved to the rescue area to wean her off the ventilator. She will probably go the step down unit with the trach in but she cannot go to the step down on the vent.
I did ask about child life and other services we were getting at Cincinnati Children’s. They will start some massage soon and the step down unit has music and art therapy so that is encouraging.
Thanks for reading our blog to get the most up to date information. We appreciate everyone’s interest in Alicia’s progress. Thanks for all of your kind words and well wishes. Also, thank you for making sure we have everything we need! We could not do this without all of the support we have gotten: financially and emotionally!
Mary Kay (mom)