Good job Carson!

Carson had surgery today to fix your nose. I have to say that I was so proud of him! He does not do well with pain. Our family jokes that it is a good thing that it is Hallie that has the health problems because Carson would not do well with it. We'll just say he is a tad bit dramatic.

So going into this, I was more than a little worried. He's done fairly well with the pain since he broke it, but one never knows what will happen once you get to the hospital.

Carson, on the other hand, was so excited. He could hardly wait to get there. He has loved the extra attention and I think he has appreciated getting a deeper insight into his sister's life.

And Hallie was more than excited to get to go to a friend's house to play and not be the one going to the hospital. She came into my room at 1:00 this morning, after unhooking herself from her pump. She wanted to know if it was time to go yet. I sent her back to her bed and 30 minutes later, I found her wandering around the house. When I woke Carson up at 4:30, Hallie was up and out of bed in the other room before he was.

We got to the hospital and had to wait for awhile due to a scheduling mistake (surprise). Carson was so good and entertained himself. We have spent a lot of time preparing him and talking about what to expect. He was thrilled to put on the hospital gown and to have his vitals taken. He knew there was a point where I couldn't go back with him, but he was totally fine with it.

20 minutes later, he was done. The dr. said the septum snapped right back into place. He gets to wear a splint for 2 weeks, which he is not thrilled about. He wished that he actually got a room with a door like Hallie gets when she stays in the hospital and was actually disappointed that he didn't have to stay overnight. But he did get to ride in a wheelchair on the way out, which almost made up for it.

In all, I was so proud of him. He did so well-- he didn't whine or cry and hasn't complained at all. In fact, of the 20 surgeries my kids have had, this was by far the easiest. Great job Carson!

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Discouraged

I have to admit that I have been pretty discourage the last little while. Hallie is holding steady, not great, but not horrible either. I'm grateful for the reprieve from her TPN. I cleaned out her cupboard of medical supplies to gear up for all of the tube feedings supplies. I boxed up all of her TPN supplies and put them in the garage. Unfortunately, I don't feel like she is done with TPN. I feel like it is only a matter of time before she is back on it. I am grateful for the time that she has to rebuild her reserves and to not have to worry about the damage being caused to her liver. And tube feeds do give us a certain amount of freedom, in that we can start it whenever we feel like it at night, we just have to adjust the rate so that it goes in faster or slower. She is loving being able to go to sleep at night, not hooked up-- we hook her up after she is alseep.

So while I am grateful for these things, reality looms very close. While she was on TPN, Hallie was only getting 2 nights a week of tube feeds. It had gotten to a point where I HATED tube feeds. They were always her worst night and usually led to absolute blow outs or days of pain because she wasn't tolerating the formula well. We switched to a new formula (Neocate Jr.) in March to see if she would do better with it. Luckily, her allergy/asthma doctor had a ton of samples that he gave us. They didn't have any other patients that used the Neocate, so they loaded us up. Well, reality set in last week when I realized that we only had 2 cans left and I needed to order more. I started poking around the internet and was shocked at the prices. $50-$60 a can and she goes through a can every 2 days. We were going to have to pay almost $1,000 a month for her formula. It just was not a possibility. She has drained us dry and we don't have that kind of money to pay on top of her other medical bills. I started contacting doctors, trying to come up with free samples or a cheaper place to get it at. One of the nurses at the allergy/asthma dr. told us that our insurance should cover it, got all of the information and sent it in. I have to admit that I was getting my hopes up. If they covered it (we have never had an insurance cover it in the past), it would solve a lot of problems. The next morning, I got a call that they denied it. I cried. I had no idea what we were going to do.

I just feel so tired. I'm tired of fighting-- doctors, insurance companies, and anything else that I have to do to keep us afloat. Derrick has been traveling a lot and I am doing most of this on my own. Our golf tournament that I have been working on for 6 months is 3 weeks away. The deadline to sign up is in 3 days. We have 8 people registered and 2 of them are under 5. I have a lot more that have said they would golf, but so far no one else has paid. We were really hoping that this would at least give us a cushion financially, especially since our insurance plan changes in 4 days and it is the worst insurance we have ever had. We are going to have to pay for everything-- labs, x-rays, any little thing that comes along. It is making me very nervous because we are barely making it with the good coverage we have now. So, it is very discouraging to have worked this hard and just be hoping to break even.

My cousin Gentrie is really sick. She has a paralyzed stomach and hasn't been able to eat or drink since December. Her body is slowly shutting down. I have been helping them the last few weeks to set up a website, FB group, and get going on fundraising. I am happy to help because if it cuts through some of the red tape and uncertainty of how to proceed that we had, it is worth it. They had a yard sale yesterday and it was HUGE! They made $18,000. She needs $200,000, so this is a drop in the bucket, but it is a good start.

I am so excited for them, but I am so sad for me at the same time. Seeing the help that they were able to rally, made me realize how small my support system has gotten. A year and a half ago, when she first started having problems, I didn't think we would have an issue getting the help that we needed. I had friends here, we had a good ward, it would all be good. Then I left for Salt Lake for 2 weeks last March. When that stretched into 2 months and I didn't hear from hardly any of my "friends", I have to say I was disappointed. Maybe they weren't such great friends to begin with. As we got back and started to get back into our lives here, I realized that most of them had no clue what our life was really like and how hard it could get. Since then, I have watched more and more people drop out of my life. People I used to talk to all of the time, I haven't talked to in months. And it is not just the people that I thought I was friends with here in Reno. It was life long friends in Salt Lake as well. Some have admitted that our life is just too hard. Some have said it makes them feel guilty to be struggling with what they are when our life is so much more complicated. Some just don't tell us anything and fade out of our lives. And some can't deal with the constant attention we seem to get because we have so much drama going on. At a time when I need friends more than anything, it has been extremely difficult to watch this happening.

When we moved, we specifically looked outside our ward boundaries because we knew that we needed to add to our support system. I am very happy with my new ward. I think that given time, we can really get involved and be happy here. The only problem is that we are gone so much-- Derrick for work and me traveling with Hallie. It is hard to get to know people and to let them in. After Hallie's news piece aired, I heard people at church pointing at us, telling people that Hallie was sick-- no really, really sick. I don't mind-- I would rather them know than not, but it just showed how many people were in the dark about why we are gone all of the time. The sad thing is that I feel like we lost our old support system in our old ward. We didn't add to it, we just swapped. That's all right I guess, just sad to feel like the reason people were stepping up before was simply because we were in the ward and their responsibility. We have a handful of peopl left from our old ward that make an effort to stay in touch with us and I am so grateful for them.

So back to the formula-- here I am so discouraged and tired of fighting for everything. I had no idea what we were going to do. I even went for a 3 hour drive into the mountains and just prayed and cried because it felt like such a heavy burden. When I came back, there was a message from a nurse at our pediatrician's office. She was going to try and fight our insurance for us and would call me in the morning. Friday, Marci spent 6 hours on the phone with United Healthcare. And I literally mean 6 hours. When she had questions for us, she had someone else call and ask them because she didn't want to have to start all over again. I finally got a phone call from her saying that they were going to cover it. We have a 3 months supply of formula (about $3,000) being shipped out tomorrow.

I can't even tell you how grateful I am to have someone fight for us. To know that Marci would go to such extremes to help us means a lot. I know that my Heavenly Father hasn't left me alone. He has given me trials more than I ever dreamed possible, but He will not leave me alone. I don't know what is going to happen with the golf tournament. It may just be a small, quiet event and if it is, I will pick myself up and move on to the next thing. No matter how tired I am, I can't keep fighting because Hallie is worth every second of it. I will just enjoy it that much more when we have someone else help carry the gauntlet for a little while.

Carson's having surgery

I guess my kids think it is totally normal to have surgery. No big deal. Tucker has had 2 surgeries in the last year. Hallie has had 3 along with countless procedures under anesthesia. Carson wanted in on the action, so he will be having surgery on Wednesday.

On what, you ask? His nose. He was warming up for a baseball game on Saturday and the sun got in his eyes. A ball glanced off of the tip of his glove and hit him in the nose. He had a good nose bleed, but I didn't think too much about it. I ran home and grabbed a clean pair of pants and by the time I got back (5 minutes), the bleeding had stopped. He played his game, we went home, no complaints. Fast forward to Tuesday morning when I am woke up by Derrick yelling at me to get into Carson's room. I run in and find him covered in blood. It was coming out of both nostrils, all over his face, all over his bed. It was a bit alarming. We cleaned him up, put a nose ice pack our home health nurse had given us for just such an occasion on it and waited until we could call the doctor.

I called the pediatrician and they told me to take him into the bathroom and look at his nose really closely under the lights. They wanted to know if it was crooked. Sure enough, I didn't even need the light to see it. I just had to look close. It's pretty crooked. I tried to convince myself it wasn't that big of a deal, but I think deep down I knew that it was. We didn't let him play in his last baseball game. He was devastated but no more so than his coach. The coach actually offerred to go buy a mask that he could wear to protect the nose. It made Carson feel good because he is getting to be a really awesome baseball player.

So yesterday, we headed off to the ENT. Luckily, we have one here because of Tucker, so I was able to convince them to get him in ASAP. The funny thing is there is no bruising and not really any swelling, so they weren't too concerned about it. Even the nurse that took us back was a little disappointed that it wasn't worse looking and I could tell that she thought I was out of my mind for making such a big deal about getting him in that quickly. Then the doctor came in. He looked at it, shined a light up there and we were very quickly talking surgery. He says it is a lot worse on the inside than the outside. He thinks the ball hit right where the septum connects to the nasal bone. The bone got pushed one way and the septum popped off completely. Carson is having trouble breathing and it has started bleeding 2 other times. So, we get to go in and fix it.

They will go in with 2 rods, one on each side and try to manipulate the septum back into place. He says it doesn't always work and that sometimes all it does is buy him a few years before they need to open it up to fix it, but it is worth trying this less invasive way first. It is out patient surgery and he will have to wear a splint for about 2 weeks to protect his nose.

As we were walking out, Carson looked at me and asked if he was the only one in the family that hadn't had surgery yet. I think he thinks it is like a rite of passage to be a part of our family. He was actually even a little excited about it. Then reality started setting in last night and he is getting nervous. I will just be glad to get it over with. I will post pictures after then surgery because honestly, there isn't really anything to see right now.