Today is a big step forward, we are getting stuff together to move from the ICU to the fifth floor. :) Had a little trouble with her blood sugar bottoming out over night with the switch from iv insulin drip to subcutaneous long acting insulin injections. Blood sugar was down to
35 last night but has leveled out this morning. Thanks for all the prayers that have called this far. Love you guys. Thank you Lord for this BIG Forward Step!
It has been a pretty good day, we even had some sunshine here. We've really only seen snow or rain during our trips to Minnesota. Bailey is feeling some better today and Addison has walked a mile and had her first liquids by mouth today. It's only 8 oz three times a day but it's exciting for us. :) Her blood sugars are all over the place so hopefully we can get that more stable. The plan right now is to move from icu to a regular room tomorrow. On Monday they will pull the jugular line and put a picc line in. Since switching to the fat free formula for her feeding tube the drainage from the ascites has greatly improved, so hopefully the cut lymphatic vessel will repair itself. Yay :) Thanks for all the prayers.
Addison has had a really good day all things considered. Please remember Bailey in your prayers she is having a flare with her pancreatitis and is back at the room with abdomen pain and vomiting. Thanks
Yesterday was another back stepping day, lots of pain and vomiting. They were really increasing her tube feeds very rapidly and I think it all was maybe stemming from that. Her intestines are just starting to function again and then the feeds were increased quickly, just a little much for her. Last night they turned off the feeds again and she seemed to ease a little. Restarted feeds this morning with a plan to increase rate more slowly. With the setbacks it has bought us extra days in the icu but hopefully in the next day or two she can move to the fifth floor to a regular room. I know God is still in control even with the forward and backward steps and I know prayer has her covered and is at work thanks to all of you. Happy Friday to All from a still chilly Minnesota :)
Last night was much better then the previous two. She slept pretty good and the blood sugars are running pretty stable. They are restarting tube feedings today and we will see how that affects her drain and slow bowels.
This evening has ended on a much improved note over the last couple of days. More alert and able to interact with others and finally had a small result in the bowel issue. She is so strong and courageous and has handled this better than any adult would or could. Thankful to God for looking after her and us and thankful for setting a little more sparkle in her eyes this evening. The leak into the drain seems improved by holding the feedings so hopefully that can resolve itself without need of surgical repair. Thank you all for the prayers, love and support through all of this.
Continued prayers would be greatly appreciated. Having a few setbacks which is not uncommon with such a major surgery. Addison has a rare surgical complication called chylous ascites which means a major lymph vessel that carries lymph fluid, fats and triglycerides was cut during surgery so now there is a build up of lymph fluid and triglycerides in her abdominal cavity. Dr. C says he has seen it a few times and is not overly concerned at this point. First line of treatment is to change tube feedings to fat free formula to reduce what the cut vessel is putting out into the belly and allow the vessel to heal itself over the next few weeks. They were able to catch this by watching the surgical drain which is putting out a milky white pink fluid pretty excessively. Sent a fluid sample from the drain to the lab to confirm a high concentration of triglycerides in the fluid. If it doesn't repair itself then we will address that later. Also, she has still not been able to have a bowel movement and just now she had to have a catheter placed because she also is having trouble urinating. This was a big big surgery and things like this are expected but they are still hard to watch. We love you all and appreciate everything and each of you, just continue praying for our strong girl. Thanks.
