Friday, October 29, 2010

The Long Haul

Well I meant to blog updates through the surgery and recovery. But it was just one of those things that fell by the wayside.

This recovery has been far longer and complicated than we had ever really imagined. The doctor had told us we could be here at CHOP for 4-10 days, but had said ten days is really unusual but it does happen. Well we are on day 9 and will likely be here at LEAST through the weekend.

The surgery went very well. As expected. The surgeon told us that he tried to put a stent in the constricted area of Anna's intenstine to measure it. The smallest he had was the width of a pencil and he couldn't get it in the area. He said it should have been wide enough to drive a matchbox car through. So quite constricted.

Also Anna came out of surgery with a tube down her nose into her stomach that was draining off bile so that she wouldn't puke it up. The tube is usually in just for a few days as the drainage weans down. But Anna had such a high volume of drainage that she just got the tube out this morning after they did an Upper GI yesterday to be sure that things were all ok and nothing weird was causing the extra drainage.

Poor Anna has had nothing to eat or drink for 10 days. We are hoping today that she will finally get some water to sip and hopefully will be eating again in a few days!

Also because the recovery was taking a bit longer than expected Anna was receiving nutrition via her IV. But the IV nutrition is really hard on the veins and very quickly Anna started having continuous IV issues. The IV team had to be called several times a day to check her IV and often manipulate it or replace it. I think she had a total of 5 IVs placed, plus a few misses. So this became a HUGE source of anxiety and panic for Anna. The doctors decided to have PICC line placed so that we wouldn't have to worry about the IV and she can receive better nutrition this way. So she had to go through sedation again to have that placed. But it has been truly a blessing for Anna not to have to worry about that IV!

So we are really not sure when we will be home. But we are guessing early next week. I have been here with Anna since the day of the surgery. Ben has been at the grandparents' houses being spoiled rotten. So this weekend Cla is going to spend in the hospital with Anna and I am taking Ben home! I am a little disappointed to miss probably her first bites of food. But I SOOOOO miss my dear Benjamin and we don't want to miss Halloween on Sunday!

Here is Anna before her surgery. She was quite happy and playful despite being hungry.

They brought her a bunch of toys to play with while we waited.

And she got this beautiful quilt to keep!

Before taking her back for the sedation and surgery they gave her "giggle juice". It made her relax, and get sleepy and droopy. Also helps lessen stranger fear and causes mild amnesia so she won't remember the scary parts.

And here she is resting comfortably after surgery.

At one point Anna had about 7 wires/tube coming out of her that were constantly all tangled and uncomfortable.

But soon she was feeling well enough to sit up and play with some toys.

Aunt Robyn and Uncle Steve sent Anna a big bunch of balloons that she had a great time playing with. She got all tangled in the ribbons and then passed out from exhaustion LOL

And finally the tube is out of her nose!


Katherine T. Lauer said...

Poor snuggle girl! I bet you cannot wait till she is home and you can get back to normal life!

Julie @ Trinity Acres said...

Oh wow. Poor baby! She is too sweet. I hope you and your husband are holding up well. I know this must be very stressful. Prayers.