We are out of there!

We are officially released from Primary Children's Medical Center! Yeah!!!! They tried to kick us out yesterday, said our insurance wouldn't cover it because there was no medical necessity. I think that yesterday was one of our most frustrating days in the hospital!

According to the dietician, Hallie was taking in 90% of her expected calories. You should see her eating-- a fry here, a bite of PB&J there, if I'm lucky, 2-3 sippy cups of something each day. For those of you that have seen Hallie eat, there is no way that is 90% of what she normally takes in. They were trying to calculate her calories on 92 more calories than a normal child her age-- right! She is missing half of her intestines! She eats more than Carson hands down and rivals what I eat on some days. My friends Shannon watched Hallie several times while I was on bed rest with Tucker and she was absolutely amazed at how much food she eats! I packed a bag for her to spend the day at the pool with Shannon once and she kind of laughed at me with how much food I packed for her. It was all gone when they got home. So for some dietician to tell me that my child only needs 92 more calories than a normal child is absurd. Hallie has lost 3 lbs since January and those 3 lbs probably took me close to a year to get on her. I would guess that she is taking in closer to 30-40% of her normal. Oh, and the dietician also says that for her heighth, her weight is in the 90th percentile. Are you joking?!!!! Her legs and arms are twigs. There is absolutely no meat on them any more.

So after the lovely dietician informs me of this, they basically tell me that they are sending her home. I told them I wouldn't accept responsibility for her. She wasn't even drinking enough to go without being hooked up to an iv at night. Plus she's been throwing up at night. They didn't take that into consideration either. First, I had a long discussion with her nurse, then with the resident surgeon, then with surgical nurse practioner. Of course, this takes ALL day to get through all of this. All the while, her actual surgeon is in a liver transplant that took about 9 hours. I talked to the discharge nurse-- if I insisted on keeping her in the hospital, I was going to have to pay out of pocket for it. They were sorry, but that is just the way the insurance is. I talked to our pediatrician's office her in Salt Lake. They said that if I felt she would benefit from a feeding tube, then they would support me in it. I talked to several nurses who have taken care of Hallie after her other intestinal surgeries. They all agreed with me that this is very abnormal for Hallie and that she would probably benefit from a feeding tube for a few weeks at least. I talked to her GI dietician. She felt that Hallie wasn't tolerating her food very well based on how much pain eating was causing her and the fact that her bowel movements were straight water. She went as far as to suggest we take her off all food for a few days, tube feed her with formula, and then slowly reintroduce food, documenting everything so that I knew what she would tolerate and what she wouldn't. I felt that was a little extreme, but hey, whatever. At least she agreed that Hallie needed more help. I just coudn't get the surgeons on duty to agree. It was so frustrating! They wanted me to wait for a few weeks and see how she did and then possibly place a feeding tube. I knew that if we placed one now, Hallie would view it as part of getting better and handle it a lot better than being home for a few weeks, start feeling normal, and then put a tube down. Not to mention that I knew she couldn't afford to lose any more weight and I was worried about her getting dehydrated-- a concern that we have on a normal basis since she is missing so much of her large intestine, let alone when she isn't drinking enough!

Then Dr. Scaife came to the rescue! I love that doctor! I know that Hallie wouldn't be here know if Dr. Scaife didn't trust me the way he does and actively include me in any decisions as a member of the team. Even more so, he values my input above most of his team because I am the one taking care of her day to day. Derrick asked me how I convinced him she needed a feeding tube. I told him I didn't have to do any convincing. Within 2 minutes, Dr. Scaife asked me what I thought, I told him, he was writing orders for a feeding tube to be placed and putting notes in her record so that the insurance would pay for her to stay there another night. It was like this huge weight had been lifted off of my shoulders! There is a reason that I trust Dr. Scaife so much and it is because he truly listens to me. I felt the same way when we went in for our consultation that we scheduled surgery at. I had talked to other doctors until I was blue in the face. None of them truly listened to what I had to say and I was extremely frustrated. I walked into his office, he listened to me for a few minutes, told me he had to take care of 2 other patients quickly because she would take a while to sort out. He came back a little later and told me the exact thing I had been trying to get other doctors to see-- she needed surgery. Dr. Scaife is truly a blessing in our life!

I was taught how to place her tube and actually placed it myself. We hooked her up last night and this morning they came in and said she was tolerating it really well and she could go home. We are putting her on Zantac to try and help keep things moving through so that she isn't throwing up every day. I really think that should help a lot. Hallie called my mom this morning to tell her to come pick us up. She asked what time and Hallie told her 9:30. I don't know where she came up with this time, but she was ready to go. We had our bags packed, with her sitting in her wagon, seat belt on, all ready to go for most of the morning. It was hard to coax her out!

Of course we couldn't leave without a few glitches and they were having a hard time finding a place that would rent us a pump for the weekend and then turn around and find return it when we head back to Reno. Derrick and I talked about it and as much as I want to be with my other kids for Easter, we feel it will be better to wait until after the holiday weekend is over. If she has any more problems, we don't want a repeat of last weekend! They also told us they didn't think the insurance would pay for the pump because Hallie is eating some by mouth. It is all so frustrating! Luckily, the discharge planner found a company that services both Utah and Nevada. They will be delivering a pump tonight and supplies for the weekend here and then the rest of the supplies to our house in Reno. When we are done with the pump, we can just return it in Reno. And because we have a written prescription for the pump, the insurance should cover it.

Hallie is happy to be out of the hospital. I would have thought that after spending 24 hours a day for 7 days with me in the hospital, she would be very happy to play with her Grammy and aunt, but so far she is fairly attached to me. She is feeling better than she has in a long time. She is going longer and longer in between pain meds and is using fewer hot packs to help with the pain. She is laughing and giggling a lot more. She is climbing up on things. She even pulled off all of her steri strips off of her incision. They were bugging her. It is so nice to see her emerging again. Being on a surgical ward, you see all sorts of patients come and go. You realize how sick Hallie has been when you see how long other patients stay. One girl across from us stayed for 2 days after they straightened out her ureters from her kidneys to her bladder. Another girl had rods and pins placed in her leg and was gone the next day. One boy had a severe case of appendicitis and was there for 5 days. Hallie spent 9 days the first go round and 7 this time. She has been one sick little girl and yet her surgeon says that she is rebounding more like he would expect a child who had just had their first bowel resection, not her 4th. She is pretty incredible and we are so incredibly grateful to have her in our lives and to know that the Lord has entrusted her to us to help her through this!