Yesterday We were finally given to go ahead to come home and begin to heal! Angela is doing so much better since leaving the hospital -- maybe not so much physically but emotionally she is back to her happy little self. Home is amazing -- it's amazing how when you are surrounded by love and comfort and when the threat of people constantly poking and prodding in taken away, how much healing can occur.
Angela came home with a central line and is on TPN for all of her calories. We are trying to push feeds thought her j-tube into her small bowel but we are going to take it very slow, as to not make her belly angry. We will keep pushing her rate higher and higher until we are at goal and then we can get that ugly line out of her chest!
This hospital stay was so difficult -- but we got through it and now that I've slept in my bed and had a nice shower I can say that I've once again have gained my perspective back. Caring for a medically complex child can be so difficult, but I must say that there is so much beauty that can be found in it. The ability to serve Angela on this intense level is very special. I fully understand that not everyone could do it -- it blows my mind that God would choose Adam and I to meet her every need -- to give her love and a place in our family but also meet her needs medically.
We are ready to begin life again. Angela and I hit the town today. We headed back down to duPont for her six month Opthamology appointment, we did a little shopping, went to the grocery store and came back home for a meeting with the home infusion company. Life is back to normal!
Angela rocked out her Opthamlogy appointment. I'm not totally a fan of her Opthamologist, as she is the one who didn't want to give Angela glasses at her last appointment. Her view is that patients who have cognitive issues and don't present as if they are even trying to look should not have glasses. I totally disagree in a huge way. Ok, so maybe some children will have no response to the increase in vision, but I'm sure there are a million who would. Every child deserves the chance to see, no mater what there cognitive level. Angela was very attentive to the doctor, waved hello and goodbye and even threw a little temper tantrum. That's my girl. Rest assured that Angela will get her main eye care from the Low Vision Clinic at the Eye Institute, but I still want to keep her at duPont in case we ever need anything more from them.
Thanks again for supporting us through this little bump in the road. We are home and as you can see by these photos she is on the way to healing.