FRUSTRATED!!!!!

I cannot even begin to describe how frustrated I am right now. After Hallie was in so much pain last week, I really started pushing the doctor to find answers. Friday, her central line stopped working, which meant that the home care nurse and I spent well over an hour trying to draw blood. We did everything from basically hanging her upside down to taking the dressing off to try and allow any kinks to work themselves out. Didn't work. Then, I had to take her to the lab to get her blood drawn with a poke. Not fun when I had promised her no more pokeys, but we had to have the lab work that day in order to get her next batch of TPN (nutrition) mixed up. After that, I was on the phone with the surgeon's office, trying to figure out what we needed to do. I ended up having to race to the hospital to meet the apointment they had set up for us with the radiologist. He injected dye and followed it through. Turned out she had a fibrin sheath over the end of the line. It's part of the body's natural clotting process. Hopefully, the contrast was thick enough to push it away and make it work normally. We will find out tomorrow morning when the nurse comes to draw more blood.

Monday morning I spent in the GI doctor's office. Good news is that Hallie gained a pound and grew 1/2", which is HUGE for her. Bad news is that things still aren't working well, so we finally started her on an antibiotic. Of course, the antibiotic can't be found at just any pharmacy and so we got to hunt all over to find it and head to south Reno to pick it up. I have noticed that she is less agitated and mean, but not a huge difference in her bowel movements. He also sent us to the hospital for an x-ray of her belly.

We got the results of the x-ray back today. It's not great news. Part of her large intestines appears to be dilated, which means that it is stretching out. So, we get to add another drug to her regimen to try and get things moving through better. It is a drug that has black label warnings from the FDA, so we have tried not to put her on it, but at this point, we HAVE to get things moving better, or we will end up back in Salt Lake for intestinal surgery. Some of the side effects include increased irritability, mood swings, lethargy, and muscle spasms/twitches. The problem is that they aren't sure if you stop taking the drug, that the side effects will go away. Hallie has been on this drug before when she was younger and we didn't see any of the side effects, but it is still a concern.

I've been in touch with her surgeon in Salt Lake and he wants a contrast study done again. That means a tube down her nose into her intestines so that they can put contrast in and follow it through to see exactly where it is stretched out and how extensive the damage is. Depending on what they find, it could mean more surgery for her.

I am so frustrated. Right now, she is on 8 different medications/nutritional supplements to try and get her intestines to function more efficiently. Despite all of this, they are still being damaged. It breaks my heart to see her suffering and to know where we are headed with this. She can't afford to lose much more of her intestines, so where does this put her? We are hoping and praying that the damage isn't that bad and that it will be able to repair itself, but things are not looking good. If she ends up losing more of her intestines, what are our options? I know a lot of that will depend on how much of it is damaged and where, but it is breaking my heart to think about her losing any more.

We are trying to make the best decisions for her, but it seems that despite everything we are doing, she is going to continue down this road. Is it time for us to start consulting with other children's hospitals about the possibility of her being a transplant candidate? If so, which ones are the best. San Francisco and Stamford both have great pediatric small bowel transplant programs, but so does Cincinnati, where my in-laws live. Am I willing to move out there in order to give her the best chance at survival? Is that where her best chance is? Or is it closer to home, where maybe we can do a lot of commuting. I'm not sure and I think that is part of what is weighing so heavily on me right now. There is so much to think about and so many different directions that we can take her right now, and for the most part, it is up to me to decide which ones to pursue.

We are going to wait and see what the contrast study shows. If it is something that needs to be surgically repaired, we will be heading to Salt Lake for surgery. If it is not, I want to start talking to both her GI doc and her surgeon and ask them to start researching which hospitals have the best program for her case. Regardless, we will probably be setting up a time that we can go to San Fran and meet with the doctors there. That would be my first choice since they are only about 3 1/2 hours away. I have a great aunt that lives there as well, so I would not be totally on my own in a strange city. I just really feel like the time has come that we need to start exploring our long term options with her. Even if she is not a transplant candidate at this point, we need to look at where she is heading and what we need to do to take care of her.

Date Night

We are really trying to have more quality one on one time with the kids. I typically spend a lot of time with Hallie, which means that she becomes very dependent on me to do things for her. She doesn't want her daddy doing them, which makes it difficult for me to do things with the boys. Derrick is great at spending one on one time with Carson, but I rarely get to spend time with him that is not asking him to clean his room, do his homework, etc. So, we decided to start date nights with the child we spend the least amount of time with.

Carson was really helpful last night, so I wanted to reward him tonight. We didn't have a lot of time, but we made it work. I let him choose hot chocolate or ice cream. He chose hot chocolate, so we went to Starbuck's and had hot chocolate and doughnuts. It was so nice to spend time talking to him. We talked about school, friends, what's going on with Hallie. I don't want to scare him, but I need for him to understand why there are times that we drop everything and run. There are times when I have to miss things of his, not because I want to, but because I have to in order to keep Hallie alive. It turned out to be a really good night and I am so glad that we did it. I feel closer to him than I have in a long time and I feel like he has a better understanding about why mom is so stressed all of the time. Hopefully, it will be a good thing all of the way around.

Next week is Derrick and Hallie's turn....

Mr. Independent

Tucker is my most independent child. Here he is barely 14 months old and he is sleeping in a big boy bed-- earlier than either of the other kids. We put up bunk beds in the boys room because I was tired of them taking up room and didn't want to wait until Christmas to put them up as planned. I figured that we would keep Tucker in his crib for awhile longer, but at least this way I was not trying to store the bunk beds. The first night they were up, I put Tucker on the bottom one while I was taking care of Hallie's bed time routine (not a quick thing). When I came back to check on him, he had fallen asleep. I was a little hesitant to let him sleep there, but decided that I would see how it goes. He has slept there ever since. We took down the crib the other day. He can get in and out by himself, and he will usually get out 2-3 times before finally settling down and going to sleep. Last night, I found him at the top of the stairs and as I headed up to put him back in bed, he turned and ran back to bed and was scurrying to get in, when I caught up to him. Darn-- he got caught. I can't believe how easy the transition has been, though. Carson would play in his room for hours with the door shut before finally falling asleep on the floor. He even slept in a tent for a few months. Not Tucker. It has been way too easy.

And speaking of easy, Tucker LOVES to shower. And I am not talking about liking it or enjoying it. He is having a love affair with the shower. He begs, cries and pleads to get in the shower multiple times a day. This morning, Derrick was showering and wouldn't let Tucker get in with him. You would have thought the world was coming to an end. He sobbed his little guts out. And he wouldn't stop until after Derrick had gotten out and started the water again so that Tucker could get in by himself. He just stands and plays in the water. Goofy kid! The other day, Carson turned the water on so that it would warm up while he took his clothes off. He didn't shut the door all of the way and the next thing I knew, Tucker was in there-- clothes and all. He would gladly shower with every family member and then a few times by himself if I let him. If I want to shower by myself, I have to wait until he is down for a nap. He is a funny kid. He makes me laugh every day, which I desperately need righ now.

Pumpkin Patch

Carson's class went on a field trip, so the younger kids and I tagged along...

Carson's 2nd grade class

This picture brings me to tears. We had gotten maybe 10 turns into the corn maze when Hallie started having so much abdominal pain, she couldn't walk. I tried to get her to go on, but she ended up in a heap sobbing. I didn't think I could find my way back to the entrance, and it was just the 3 kids and I at that point. I was so frustrated and didn't know what to do. Carson looked up at me and told me that he would take Tucker for me. He carried Tucker for about 5 minutes before he put him down and let him walk. We went that way for about 10 minutes before we ran into another group with more adults and a few of my friends took Tucker for me. I am so proud of Carson for stepping up and helping me out. I don't know what I would have done otherwise!

Check out Hallie in the news!

I've added a clip from youtube to our side bar about Hallie. Check it out....

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30 meals in 1 day

I have been trying a bunch of new recipes as I am attempting to make my life a little easier. Friday, I made 30 meals to put in the freezer. It was a LONG day, but I am so pleased with my freezer being stocked with fabulous meals. We had our first one yesterday for dinner and it was so nice to pull a homemade meal out of the freezer and in the oven and be done. Very nice. I had a book recommended to me-- Dinner is Ready 30 meals in 1 day-- and it has 150 recipes, as well as walk you through what you need to do to make that many meals in 1 day. I should have read it more carefully, because they had a lot of great tips and ideas to make it go faster. I read the first 8 chapters and when it go to the chapter on the benefits of the different types of freezers, I skipped to the recipes. They had a lot of good ideas, like thaw your meat ahead of time and cook your chicken the day before and in the process, make your own chicken broth-- would have saved me a lot of time! Oh, well. At least I will know it for next time!

Anyways, I have had a several people ask me to share the recipes that I use, so I thought that as we try them and determine if they are good enough to make again, I will post them to my blog.

Here is last night's meal:


Ham and Chicken Roll-Ups
Dinner Is Ready
Assemble
Dinner - Main Dish
1 cup rice, uncooked
1/4 cup onion, minced
1/4 cup celery, minced
1/4 cup mushrooms, chopped
3 Tbl butter
1 1/2 cups boneless skinless chicken breast, cooked, chopped
1 10.75 oz can cream of chicken soup
6 slices cooked ham
1/2 cup sour cream
1/4 cup milk
1/4 tsp pepper
1 cup Swiss cheese, shredded
1 cup French fried onions
Cook rice according to package directions. Arrange rice on bottom of greased foil baking pan. Cook onion, celery and mushrooms in butter until soft. Combine onion, celery and mushrooms, chicken and one third of the soup. Divide among the slices of ham. Roll up and place seam side down on top of rice. Combine sour cream, milk, pepper and remaining soup. Pour over roll-ups. Cover with extra heavy foil. Label and freeze.
To serve: Thaw. Bake uncovered, 45 minutes at 350บ. Top with cheese and French fried onions. Bake 10 minutes.
6 Servings


My kids LOVED this and we at every last bit of it. I would probably double the recipe and make a whole casserole dish of it, as opposed to a 9x9 pan. Also, I would add more rice and more sauce to make it go farther.

This next recipe is not one of my freezer meals, but one I came across and thought sounded good. We made it for breakfast yesterday with my sister and will have to make again when Derrick comes home.


Amazing Apple Pancakes

2 apples, peeled and sliced
1/2 cup sugar
1/2 cup brown sugar
1 tsp cinnamon
5 Tbls butter/margarine
6 eggs
1 1/2 cups milk
1 1/2 cups flour
1/2 tsp salt
powdered sugar

Lower rack in your oven so that it is closer to the bottom of the oven than to the top. This rises, so you probably will just want 1 rack in the oven. Preheat oven to 425 degrees. In a small bowl, mix the apple slices with the two sugars and cinnamon; set aside. Chop the butter/margarine and scatter it in a 9x13 glass baking dish, then place the dish in the oven. While the butter/margarine melts, beat the eggs, then stir int he milk, flour, and salt. As soon as the butter starts to bubble, remove the baking dish fromt he oven and pour in the sugar/apple mixture. Without stirring, pour the egg/milk/flour mixture on top. Carefully return the baking dish to the oven and bake for 20-22 minutes. Cut the pancake into squares and sprinkle powdered sugar on top. Makes 6 servings.

This does rise while cooking, but I didn't think there was a need to remove the top rack, just make sure it is at the top setting and the bottom is at the lowest setting and you should be good. These are REALLY good!


If anyone has some good recipes they would like to share, I would love for you to send them to me. The book has what looks to be good recipes, but you know how that goes-- sometimes they don't turn out as well as they sound. I would love some tried and true recipes to throw into the mix!