New dog old tricks

We went into surgery Tuesday with starry eyes. It was the surgery that would end this season and finally return things to the way they used to be... I had Anara's backpack packed with a shirt, pants, socks, shoes, bottle and we had the car seat ready. We were pretty excited about our "quick" procedure.

The ambulance was scheduled to pick us up at 11:30am but still had not arrived at 12:10. We arrived at the hospital at 12:30, checked in, and laid Anara in a hospital crib. The minute the rails (jail cell bars) went up and locked into place Anara burst into a scream that would last at least 30 min. Anara's surgery was scheduled for 2:00pm and they finally came and got her around 3:45pm.

She was still sleeping when we went into the recovery room about 6:30pm. When she woke up she was begging for water and drank a small amount. She threw up immediately and got some IV Zofran. She continued to throw up every time she had water Tuesday night. She was very sleepy and fragile after surgery and we didn't want to move her too much. She left the hospital the same way she came in - strapped to a board and wearing only a hospital smock (so much for our big plans).

Our expectations weren't a result of total naivete. We were told that Anara might actually walk out of the hospital (I guess other kids have) and had no idea that she would be so weak and wimpy. We expected she might have a little muscle weakness, but discounted the anesthetic effect and the fact that she hadn't been even held upright for almost 7 weeks.

When we got home she was a little more awake and was enjoying being able to be held. We were excited to be able hold her upright and tried to get her to put her feet down. She was so wobbly and shaky - not only her muscles but even just holding her head still and upright.

Yesterday I was a little more brave with Anara. I put her on the floor and asked her if she wanted to crawl. She said yes and rolled herself over only to find that she couldn't even push up with her arms. She just laid flat on her stomach and pushed herself forward with her feet, dragging her bags behind her. She was able to bear weight on her legs for short intervals but was still extremely shaky and off-balance. She couldn't even sit unassisted because of the balance issue (and maybe trunk weakness ?).

But today.... Today she sits by herself (pillows behind her just in case) for short periods. Today she crawls (funny as it may look). Today she still doesn't walk or bear much weight but we are progressing fast.

Even though Tuesday didn't bring normalcy and wasn't the "end", I do realize that it was a major step. We are left with only 3 tubes (SPT, G-tube, 1 Ureteral Stent) and our appendicovesicostomy.

We are currently on a 1.5 hour catheterizing schedule and will work have worked up to a 2 hour schedule by this time next month. We are going very slow since bowel isn't as stretchy as bladder tissue and we don't want to risk perforating her reservoir. She is hooked up to a drainage bag at night so that we don't have to continue the 1.5 hour cath. schedule through the night. Hopefully someday her reservoir will be able to go 8 hours at night - hopefully.

Here is a video from today. Anara is crawling pretty well and Violet is excited to have her playmate back. You can see Anara's ureteral stent bag tucked into the back of her pants.