It was a wind out of my sails kind of day!

Mahaela had an unpleasant day. She suffered with the pain of her chest tube. They sedated her this am to pull it out a few centimeters to see if the end of the tube would cause less irritation to her lung. It didn't seem to have any immediate effect. Her pain waxed and waned throughout the day and she required some good narcotics to give her brief periods of pain relief. She did walk today and that was a sight to behold--head bent sharply to her right shoulder because of the pain in that shoulder/chest and completely bent at the waist holding our hands as we walk backwards and she shuffles forward. It was pretty awful. For the last two days, she has sat in the chair quite a bit, but has only gotten in one walk each day. She should be walking more, but both days we all agree that she is just too exhausted to make the second walk. This afternoon, they injected her chest tube with numbing medication to see if that would relieve the pain. I'm not convinced that helped too much either. This evening they started her on an IV med (that she was also on after surgery) that has some analgesic and sedative properties. They say in small doses that it just takes the edge off without sedating them. At the dose she is at, she seems fairly sedated. It is now 12:30 am and she has been sleeping since 7 pm. She crashed immediately after eating and getting back into bed. She has been eating fairly well today. She is on a low/no fat diet. She is to eat as little fat as possible--1-5 grams/day. That is really difficult for anyone to do...let alone a child! It is difficult to eat enough calories with a no fat diet, so they started her on TPN through her IV. It is nutrition supplement, IV. There is something going on with her lung that is not that unheard of, but on the rarer side--Chylothorax. It is difficult to explain, but her lymph system in her chest has a duct that is clogged or traumatized from the surgery in some way and it is dumping this high fat drainage into her lung. That is why she had so much drainage last evening and throughout today. So they try to control it by giving Lasix to get rid of any extra fluids and limiting her intake of fat. She will be no fat for about 6 weeks. They hope these things together will make the drainage slow enough to pull the tube. I think her tube put out about 200+ ml of fluid this past day. At this flow rate, the tube must stay...and will stay until the drainage stops. Bill read that a range that these kids have chest tubes is 8-42 days...no one is speculating anymore. Our nurse today said she would be in the hospital another week, at least (at least!!!!). That's when I completely deflated! As Bill reminded me tonight that we have the tools to deal and cope with this. God has given us those tools and we are in for the long haul. The Lord is with us and holding us up and He is healing Mahaela in His time. Maybe we are here to share her story to a few more people. I love the opportunity to share more of the wonderful story of how God gave her to us and what a miracle she is in our lives. We are so blessed.