This morning the neurologist came in early in the morning to check on Nina (who was still sleeping and was still sleeping by the time he left) He said that they were removing the epidural and catheter today and we would see if she was ready for the rehab unit on Monday. Then he cautioned me that for most kids, this was their hardest day. I was not sure weather to believe him or not since Nina had slept so well and we had finished the day pretty well.
At about 8:30 am the epidural guy was in the room ready to take it out. Nina was still sleeping, and it did not go so well to be woken up only to be moved around and having someone pull a needle from your back. This is when the crying began.
There was a lot of crying today. Everything hurt, but Nina was especially complaining about her tummy hurting. She finally fell back asleep sometime in the morning and took a little nap until the OT came to see her and work with her for a little. We were back to crying. Nina did really well, she sat for about 15 minutes with little assistance. If you are reading and your kid had a SDR, you know how good this is! Of course, she cried during this time too.
After the OT left, Nina continued to cry. She was crying so hard she was hyperventilating, so I had to leave the room and ask one of the nurses to come. We could not get her to settle down and she kept saying her tummy hurt. I could tell she really was in pain, and they had just given her some pain meds when she threw up.
Andy and Ellie came shortly after that and Nina settled down a little bit. Nina is not eating or drinking, so that makes it tough. By then the PT came to work with Nina and stretch her. We need to get Nina moving, but she cries every time we move her saying her back hurts. However, she wanted to get out of the room so we got her in the wheelchair and we went to the play room. She did great! She actually sat there for about 30 minutes! We did have to prop her up a little bit, but it was sweet to see her playing with Ellie. But then she threw up again :(
She eventually was too tired and needed to lay down, so back to the room we went. PT came back to stretch her some more and put her braces back on. Nina let her do this for hour and a half! In which time the catheter came off and Nina used the potty! We realized the cath must have come off before and Nina had been holding it for a while (she had been telling us she had to go potty). Andy also got to learn hot to do the roll in order to sit Nina up. Pretty challenging when you cannot just pick up your child and move them from place to place.
Ellie and I came back home and Andy stayed with Nina at the hospital. They went back to the play room and were there for a while. All of this is so good for Nina!
It was a very stressful day from an emotional standpoint...for all of us! But we are encouraged seeing Nina's physical progress.
On a side note, Andy and I were surprised how well Nina has slept in the hospital. Then today I remembered what the PT had told me before the surgery, "Nina will be able to sleep better, and maybe even sleep all night long." I guess it was true for Nina, and we have always had problems with her waking up several times at night. For the first time in her life, Nina has been able to sleep all night long! Sleep is so important, and I am just so excited that thanks to this surgery she will be able to get better rest.
Thank you again for all your prayers! We really appreciate it!