Roller-coaster

Update 11- 

May 15- What a roller-coaster the last 24 hours has been. We were thrilled she was able to begin a soft diet, but that came to a halt yesterday evening. The morning was great but just after noon she began having a problem with her back drain, the drain that pulls the fluid out of where her spine surgery was. Because of this, the drain will need to stay in place until Sunday. 

She was also weaned from her heavy painkillers and given some things to cause less sedation. She tolerated this OK, but of course it increased the pain she could feel. Last evening around 8:30 she began to complain of her heart hurting. And then of not being able to breathe. As this happened, her heart rate increased to very high. It's a scary thing when your child is crying out that her heart is hurting really bad as you continue to watch her get worse. They had to start meds to calm her and what we believe was actually an anxiety attack, began to lower her heart rate back down. After this happened however, everything that had begun diet wise came back up. Needless to say, they started over with the diet.

Morning brought a decision that she had not gotten sick from pain meds but from anxiety. So they let her have some more solid food.

Today had been great so far. The bandage was removed from her back and we saw it for the first time. It looks amazing!! Then Dr S came by to let us know that he no longer recommends the second surgery scheduled for next Wednesday!!!! We are hoping she is out of the hospital on Monday. She will see him for a clinic visit next week and then we will fly home! Her lower spine, pre surgery a 38.1 curve is now 18!! He believes it may straighten more or should it get worse, only a few degrees!

We are so grateful for this news! And for all of you who have given so much love through prayers, messages and by supporting Olivia's surgery!

Another update soon!

Update 12- 

1 week post-op update; Philadelphia.

Olivia is doing as well as expected. We've had some scary moments with times she said her heart was extremely painful. And sadly, she's had a tough time coming off the anesthesia and post-op heavy painkillers. Sickness has been prevalent.

Olivia was discharged Sat evening and we headed back to the Ronald McDonald house. Her first night was not good. However, she managed to sleep 5 hours straight last night. The most I've had as well at a stretch!

We see her surgeon again Thursday afternoon. There he will evaluate her standing x-rays and will formulate next steps for her. Then we find out when she sees him again at six weeks.

Olivia is super tall! She's is learning to walk more stable now. Her rib cage is slowly moving back where it should have been and muscles that weren't working before, are working now.

Please continue to pray for her to regain strength. Weakness can also be attributed to her lack of wanting to eat, but she must, and walk..

 

 With her Dad and I on the spine floor at Shriner's Hospital for Children before discharge.

 Walking after getting some Gelato in Philadelphia. Still holding on for help.

 Taller than Grandmother now!