So we decided to take a wagon ride around the PICU today instead.
Elaina even got to sit in front of the window and see the blue sky and clouds.
If she's really good tomorrow, the Nurse Practitioner said that we could take a walk outside to the Angel Garden for some fresh air! I'll take lots of pictures if we get to!
We're once again talking about the "H" word. I'm not going to spell it out because I swear I jinxed it last time. There are just a few more things holding us up and then we can get out the door. Home Health won't pay for the c-pap unless Elaina passes a sleep study. The pulmonologist came and evaluated her today and he said that he thought that the c-pap was helping her, but that in order for her to pass the sleep study he'd need to have her oxygen down to 1/2 liter or less. The doctors agreed to lower the O2 for the study (they want her on 1 liter minimum) so she's scheduled for Saturday night. He also told me that he had seen a lot of kids with Di George that had sleep apnea, and that they all benefited from having c-pap at night. He just transferred to Primary's from Denver. Hmmmm. Any other DiGeorger's out there that use c-pap? Anyway, we've changed her to floor status (in the PICU) and the docs wrote an order in the chart that I (Super-Mom) am in charge. The nurses do their assessments every 4 hours, but I get to give her all her meds, do her chest PT and suctioning, change diapers, and practice putting on her c-pap. Basically, I'm doing in the hospital everything that I'll be doing at home. They want to make sure that I am comfortable and confident in her cares to ease the transition.
She was really tired after her busy day of socializing and wagon riding, so she took a nice little nap. Notice the cute blanket? My sister Tricia and her daughter Kate made this blanket and donated it (along with many others) to Primary Children's. It found it's way to Elaina's bed and when I told the nurses that Elaina's cousin had made this blanket, they told me that we could take it home! Yay!
This is after her bath and with her c-pap on. She really loves to snuggle with her teddy bear. The c-pap puts her right to sleep too. Of course I'm sure it helps that she got her bedtime meds a few minutes before. I hope that she can have a restful night....
Thank you all so much for your encouragement and support. I try so hard to remain positive, but it's hard sometimes when the doctors keep forcing her condition down my throat. I won't know anything from Stanford for a few more weeks, so I'll post when I hear something. I know that through our Savior anything is possible and that He has a plan for Elaina. I am so grateful for her and her life. I know that if I live every day to the fullest and fill it with joy and happiness I will never regret the time I spend with my sweet angel. She remains so precious to me!! Please know that your words of kindness and prayers mean so much to me and help give me the courage to continue on this journey.