The Munro Family

Hallie's golf tournament was a big success and the best part is that now it is over! I don't think that I realized how much work it was going to be, but it turned into a lot more than I planned on. I couldn't have done it without my friend Jaime. I know I have complained before about my lack of support, but Jaime is a blessing from the Lord and is truly an amazing friend. Her parents even kept her kids the week before the tournament so that she could focus on helping me. It was incredible!

I also had Krissa, who is my sister's soccer coach help out a ton. I couldn't believe the things she was able to get for the tournament from Salt Lake. Her family drove out and her parents came from California. Their team even won the tournament!

I had my sister Cassity fly out the beginning of the week to help with the kids. I don't know what I would have done without her because Hallie started with a pseudo obstruction and all I could do was deal with her and try to stay sane. Cass was a huge help! My mom and dad flew in a few days before and mom took over Hallie so that I could get things done. My brother Cody and his wife Heather drove out to help as well. I don't know how I would have done it without any of them.

The day of the tournament went so smoothly and we had plenty of help. It really went off without a hiccup. We ended up with 49 golfers and I was very surprised by who some of them were. It was incredible to have so many people there that were truly concerned about Hallie and our family. There were a few times that I had tears in my eyes because of things people said or did. So while it was a ton of work, it turned out to be an amazing experience. Thank you to all who helped make it a success!

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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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.

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.

Today was a very insightful day at church. This last week has been a hard one, with lots of tears. I really needed an uplifting day at church. The following story was shared with us during Sunday School about a young piano student:

His mother, wishing to encourage him, bought tickets for a performance of the great Polish pianist, Paderewski. The night of the concert arrived and the mother and son found their seats near the front of the concert hall. While the mother visited with friends, the boy slipped quietly away.

Suddenly, it was time for the performance to begin and a single spotlight cut through the darkness of the concert hall to illuminate the grand piano on stage. Only then did the audience notice the little boy on the bench, innocently picking out "Twinkle, Twinkle, Little Star".

His mother gasped, but before she could move, Paderweski appeared on stage and quickly moved to the keyboard. He whispered to the boy, "Don't quit, keep playing." And then, leaning over, the master reached down with his left hand and began filling in the bass part. Soon his right arm reached around the other side, encircling the child, to add a running obbligato. Together, the old master and the young novice held the crowd mesmerized.

In our lives, unpolished though we may be, it is the Master who surrounds us and whispers in our ear, time and time again, "Don't quit. Keep playing." And as we do, He augments and supplements until a work of amazing beauty is created. He is right there with all of us, telling us over and over, "Keep playing." James E. Faust

I cannot even begin to tell you how many times that I have felt inadequate at being Hallie's mom. Her challenges are many and there are many times that I have felt like I just couldn't do it. I would love for someone else to carry the burden of caring for her, or of making the many difficult decisions that have to be made for her.

I needed this reminder today that regardless of what challenges I am called to face, I can do it because I won't be doing it by myself. The Lord will have His arms around me, helping me, making my effort more than enough. And for that I am very grateful..

I have been meaning to update our blog for several months now. I have even sat down a few times to do it. I think the last few months have just been so hard, that it is really difficult for me to write it all out. It makes it seem a lot more real and difficult when it is written out. But, I know that I will regret it if I don't have this to look back on and to remember, so I am going to give it a try.

I don't know that I have struggled this much in all of my life. Every direction I turn, it seems that something else is being thrown at me. I am under so much stress that my hair is turning gray, I am breaking out all of the time, and I have a persistent headache.

We took Hallie to Cincinnati Children's the end of December. I am amazed at the doctors there. We spent more time with the head doctors than we get with Fellows or Residents at other places. It was really the first time that I didn't have to explain things Hallie does to a doctor. They have seen it enough, that they completely understood. It was such a good feeling to feel like we have finally found her the help that she needs. She was admitted for 2 days while they ran tests and then we had to wait for a few weeks to get results. She has severe reflux. Her esophagus is eroding. She has a weird patch on her stomach. Other than that, everything came back normal. I was devastated. She is so far from normal, how can a doctor sit and tell me that she is? I demanded to speak to the head doctor and he gave me a different perspective. They expected the results to come back normal. They can't get catheters to the part of her intestines that are struggling to measure their function. They just wanted to see how high up it went. They gave us several different medicines to try, but told us that she has a mechanical malfuction. No amount of diet changes are going to fix it. It was hard to hear, but at the same time, a relief that I wasn't going to have to mess around with her diet for months before they came to that conclusion.

In the meantime, she continues to suffer. She is in so much pain, it hurts to watch. Food that she has always loved tastes weird to her and some days she just doesn't want to eat. We have taken her back to Stanford and they pretty much told us there wasn't anything more that they could do. They could treat her pain and take her off all food, but nothing more. Really? Not exactly the life I want for my daughter.

I am at the doctors all of the time-- at least 1-2 times a week, usualy more. Tucker has had a chronic sinus infection since the first of December, so if I am not there for Hallie, I am there with Tucker. Tucker had surgery 2 weeks ago to remove his adenoids. He is doing much better, so I am hoping to slow down with his doctor visits. Carson wanted in on the action, so we have dealt with tendonitis in his shoulder, x-rays of it when it didn't get better as quickly as the doctor would have liked, and bronchitis with him. Derrick used his inhaler wrong and wasted all of the medicine, but never fear, I have my own pharmacy, so his pediatrician had me give him some of Hallie's. She's pretty impressed with what meds I have at home. She goes to prescribe something and I tell her I already have it. With Carson's shoulder, she didn't want to write out a whole prescription for something stronger that she only wanted him to have a few doses of. Never fear, I have Lortab left over from one of Hallie's surgeries. On top of Hallie's GI problems, she has developed viral asthma. She got a virus that left her with an asthma like reaction-- for 4 months. So we got to throw in an allergist/asthma doc as well.

We have also moved. Derrick was out of town, so I pretty much moved us, except for the big furniture. I had a friend help me for 1 day, but other than that, I took several loads each day and unpacked them. I had several offers of help, but honestly, no one would have wanted my difficult child-- they all offered to take the boys. I could have had people help me pack, but then I would have ended up with piles of boxes at the new house that I don't know when I would have gotten to with the way that my life has been going. I could have had people help me unpack, but I already have a pantry that needs to be re-organized and I don't have time for it. It was a hard couple of weeks. My parents, sister, brother, sister in-law, and nephew all came out one weekend and helped us finish up the move. I am so grateful to be done with that!

We are loving the new house. It's so much easier to keep organize and works so much better with the demands of our life. I love that it is new (only 2 years old) so everything is energy efficient and I don't have to worry about as many different people's germs. We love ward, although we have only been twice. We felt so welcome and have had so many people reach out to us. Have you ever had the feeling that you were meant to be somewhere? And that certain people were meant to be a part of your lives? That's how I feel about the new ward. I'm excited to really become a part of it.

Carson is staying at his old school until the end of the year. I wish that we could change schools, but since he does not have a ton of stability in his life, we agreed to let him stay until the summer. So that means that I get to drive him to and from school, to add to the stress of my day. We ask him to make so many sacrifices for his sister's sake, that I feel like this is one sacrifice that I can make for him. There are several boys his age in our subdivision, a couple of which go to church with us. I'm excited for him to get to know them better. I think this move will be to his benefit as well.

Derrick is traveling a lot for work. Partly to network with other offices in his company, partly to save his office money because the office he travels to has to pay his salary, and partly because, quite frankly, we need the money that he gets for his per diem for traveling. But it sure makes it hard on me. I feel like I am a single parent a lot. It's hard on him because he doesn't like to leave me to do it all by myself, plus it makes it busier for him when he does get back to the office-- trying to play catch up.

And Hallie, Hallie, Hallie. My world revolves around her. Our conversations are centered around when she last pooped, what color it is and the smell of it. It's the highlight of my day. We are in Salt Lake right now and I can't figure out why no one in my family will help her in the bathroom. Last week, her central line (permanent iv) broke and she came running in with blood running down her stomach. It was a heart stopping moment for me. I pinched off the end, searched for the clamp and finally ended up tying a knot in it to stop the blood, then got to spend the day on the phone with all of her doctors trying to figure out what to do. We were leaving for Salt Lake in 2 days and had already scheduled to have her line pulled and a port placed, which is the same idea, but it is completely under the skin so that she can bathe and swim. You have to access it with a needle. I am so looking forward to learning how to do that! We finally found a repair kit and the home nurse came out and was able to super glue it back together to get it so that she wouldn't bleed to death if the knot came undone while she was sleeping.

Tuesday, she went in for surgery up at Primary Children's. It should have been a fairly simple operation, but I hsouldn't have been surprised that it wasn't. The doctor couldn't find a vein that ended up in her heart at the right place. She has a very weird vasculature, so we had to have 3 attempts to get it in. She lost a lot of blood in the process and was in a lot of pain. They had to give her a lot more pain meds than normal, which effected her breathing. She was in the hospital a total of 11 hours. She really scared me. I guess it is a new coping technique she has developed, but it is pretty scary. She zones out. It's like there is a wall between her and her conscious thoughts. You asked her a question and it took almost a full minute for her to respond. I thought they had given her too much pain meds, but she did the same thing yesterday. I'm grateful that she is able to escape some of the pain, but it is just really hard to watch a s a parent.

I've fired Stanford and we have changed to a different GI doc in Salt Lake. Cincinnati heads up her care, but we have to have someone closer in case of emergency. Dr. O'Gorma met with me while Hallie was in recovery and we made the decision to have Hallie have a contrast study of her small intestines done. She has had many of these done, but I was pretty nervous about this one. It just seems like she keeps getting worse and I was so worried we were going to find another partial obstruction.

Yesterday turned out to be another hard day. They put a tube down her nose into her intestines. It's not pleasant, but it has to be done. Well, for some reason they couldn't get it very far into her intestines. It was like they just spit it back out. That was new. It's always been difficult, but it just wasn't happening yesterday. The radiologist tried to put some fluid through to see what her body would do and she immediately threw it back up. So, we had to clean her up and wait while the radiologist consulted with our surgeon to see if they could figure out another way to get the test done. They decided to put the contrast through her feeding tube over 2 hours and then do the CT scan. It wasn't the best way, but should at least get us a few results. She was in so much pain! She zoned out for awhile. She didn't even get too enthused about the fact that Mickey Mouse was there. It was heart breaking. I finally had Derrick give her a blessing and she became more coherent. We were almost through all of her contrast and she threw it back up again. So frustrating! It is just a ton of volume for her with the way her intestines are working right now. They decided to go ahead with the CT scan and hope that enough of the contrast had made it into her intestines.

It was interesting because we normally do this under fluoroscope, but because of all of the complications, she had it done with CT Scan. They injected a dye into her veins as well , which they haven't done before either. The radiologist came out and gave us the report. He saw a thickening around all of her 30+ incisions. This would not show up under flouroscope, so I am grateful that we ended up doing it with the CT. He thinks it is scar tissue that has built up and is making her intestines collapse together. So intead of this long, pliable tube that can move food through, she has this shortened, stiff tube that is just not capable of functioning correctly. It fits with everything she is having problems with and why she is not responding to medicine. It fits with why she is just getting worse and worse. I am hopeful that we finally have an answer!

What does this mean for her? Your guess is as good a mine at this point. We are heading back to Cincinnati to run more tests. There may be a possibility that they can stick a balloon up there, inflate it and that would stretch out the scar tissue, allowing her intestines to resume normal function. However, I think that is a slim possiblity. They can't get to the section of intestines from the top because she has an abrupt right hand turn they can't get around. They might could get to it from the bottom, but we are risking rupturing her colon because of previous damage there. They may have to open her up and remove the scar tissue by hand. That thought breaks my heart, but if it is a surgery that helps her resume a more normal life, I'm all for it. We are waiting for her surgeon and her doctors at Cinci children's to review the scans and let us know what they think.

So for now, we keep moving forward. We are going back to Reno on Sunday. I am sad to be going. It has been so nice to be back in Salt Lake, where we have such a huge support system. I haven't even had to worry about my boys this week because of my 2 sisters in-law. It was so nice! My brother and his wife even picked up Hallie's prescriptions for us, so that we could stay home and catch up on some much needed rest. We have spent so much time at the hospital, that I haven't been able to see everyone that I wanted to see and I am sad.

I am going to San Francisco next weekend for a girl's trip. It think there are 14 of us going from my family. I am very excited for a much needed break. I'm excited to spend so much time with my family and just get to be with them. We are going to see Wicked and I am excited about that. I'm nervous about leaving my kids, especially Hallie. Derrick just found out that he has to work while I am gone, so now I have to scramble to find people to help out. Frustrating, but it will be worth it!

We head to DisneyWorld with Make a Wish May 10-16. I cannot wait! A stress free trip that they take care of the all of the details sounds too good to be true, but I am looking forward to it. Hallie and Carson are also excited.

Both Carson and Hallie are going to start counseling when we get back to help them deal with all of the problems in our lives. They are like oil an vinegar right now and it is adding so much stress to my life. I'm anxious to get them some help and see if it will help their relationship.

I will keep you posted with new developments as they happen. For now, we are going to head home and find out which team Carson is on for baseball!