Hospital Life

Chunky Monkey playing with her balloons - she was about to fall asleep but would not let go of the strings

Monday was a jam packed day. Occupational therapy came in and worked with Elle for an hour. They worked on eating solid foods and on the bottle for a little bit. Elle was more interested in the food than the bottle. She has gotten to the point where she now associates eating with the feeding tube and won't really take a bottle. When we get out of the hospital and Elle is back to her usual self - I may talk to the doctor about weening her off the feeding tube. I have such a mental block against making changes. Since we have spent so much time in the hospital, I find it difficult to try new things with Elle unless the doctor gives us the ok. Physical therapy came in and played with Elle for about an hour too. She is very slowly returning to her normal self and enjoyed rolling around - going after her toys. We have to be extremely careful about her chest. Since they opened up her sternum for the surgery and then wired it back shut - we have so many precautions about how to hold her, what exercises she can do, what her limits are...we've heard that there have been 2 kids that have split their chests back open after having open heart surgery - both were older and were doing silly things like skate boarding and climbing a tree and they both fell - regardless - we have to be so careful with her. The therapist actually just came in and dropped off a packet of exercises to do with Elle. We have our work cut out for us because the therapists is thinking that Elle might have torticollis. She is very scrunched up - she won't elongate her head/neck. If she does have torticollis - it is a very slight case and should be helped with exercises. During rounds, the doctors decided to go down even further on the oxygen Elle is receiving. They also bumped up her feeds to where she was pre surgery. All of her meds are now be given through her feeding tube. This is a good thing because this morning at 5:00am - they had to pull out Elle's iv since it was no longer flushing. I am anxious for rounds this morning. One of the doctors came in and turned down Elle's oxygen even further and her oxygen saturation monitor is going off constantly. I hate that stupid machine! I am praying that we don't have to go home with oxygen! We didn't have to have it pre surgery and it just boggles my mind that now that her heart is fixed and her oxygen level is higher - we might have to have it! Even if we do have to go home with oxygen - it will be worth it because we will be home!

We are still praying for poop! While things have greatly improved, I know Elle will feel so much better when all the bad stuff is out of her!