Life is tough right now. It's really hit me the last few days. I always get nervous before one of my children has a surgery but this time it's different. We don't know when it will be. We aren't familiar with the hospital, doctors or even city it will be in. I have to completely abandon my other kids for who knows how long. This surgery is important. Even if everything goes exactly as the surgeon wants, we can't really know how much it will help. People are always telling me how good Lucy looks but the truth is she looks horrible. Her skin is mottled and covered in scars from all the IV pokes, chest tubes and horrible rash she had in the hospital. We are so happy to have her home but she's still sick. We still have to treat her like she's sick.
We don't many normal things with her. Every evening since she's been home we take a walk around the neighborhood. I look forward to it and I think both of my girls do to. The rest of the day we watch movies, take naps (the kids) and try to keep track of all the medicines we have to give.
I went to church today, it was rough. I haven't been in so long and I was an emotional wreck. I brought Jack with me who is consistently a monster at church. Before the meeting even started he was showing signs that he was going to be horrible. I just prayed that he would be good at least during the sacrament. As we were sitting there and asked my sister if she had a picture of Jesus. She pulled out a little book she had made with different pictures in it. Jack sat on my lap and we looked through it together. I explained all the pictures to him. When we were done we sat for a few minutes in silence. My little boy folded his arms and said a little prayer. "Heavenly Father, Thank you for Momma and Daddy. Thank you for Hazel and Lucy. Thank you for Gammy and Grandpa. Thank you for Grandma and Grandpa. In the name of Jesus Christ Amen." It is always the same prayer with Jack but today I found it so touching. Jack doesn't understand who he's praying to or why we do it, but he does know what's important to him. His family is the most important thing. It was a tender mercy that he was so good for me today. Sometimes it's the little things that make us feel not so alone and like our Heavenly Father is there and listening.

Waiting

Having Lucy home has been wonderful but has also been extremely stressful. Lucy is now on oxygen in addition to a feeding tube the runs 22 hours a day. I hate having her tethered. The worst part about the oxygen is that it keeps us from going anywhere. She needs so much that she runs through a tank really fast. At home she using a compressor that is battery powered but when we leave she needs the tanks. We took her to the pediatrician the other day and during the appointment Chuck had to run out to the car to get the back-up tank we'd brought. I guess the thing that's really the worst about the oxygen is how dependent she is on it. If it slips off her nose she desats really fast and her oxygen sats are really low, worse than they were when we got to the ER two months ago. She wears an oximeter at night that alarms if she drops below 85%. The first night she was home the alarms probably went off a dozen times. Chuck and I now split the night sleeping outside of the girl's room, waiting for the alarm to go off. It's getting easier. Lucy is getting more used to it at home too. This was only her home for three weeks before she was admitted to the hospital. We are anxiously waiting to hear from cardiology to see if Stanford had approved the insurance. We have an appointment with Lucy's cardiologist on Tuesday. We're really hoping we'll be going to Stanford sometime next week. Sometimes I'm horrified at how things are turning out but most of the time I just feel really grateful that we've been allowed to keep fighting for Lucy.

Lucy smiles

I am amazed by this little girl. She has the best attitude. She loves all the attention she gets and she loves making everyone smile. She's made friends with all the cleaning ladies. Her favorite is named Martha who comes by several times a day and asks Lucy to dance.

The other night a nurse was showing Lucy pictures of our family and Lucy started to cry. This is hard for her but she makes the best of it. If only we could all smile this much when things are rough.

8 weeks into this mess!

So much has happened I don't even know where to begin. I won't go into a lot of detail. We had a bad experience with Lucy's surgeon and we got another guy for the time being. We sent Lucy's records to the best surgeon in the world for Lucy's particular needs. He thinks he can do the surgery and that it will help Lucy. He wants her to come as soon as possible. We have to wait for insurance approval which could end up taking weeks. If it happens sooner than that they'll wait to fix her diaphragm at the same time as her open heart surgery. If it takes awhile they'll do her diaphragm surgery here. She needs it operated on because of a surgical complication from her last open heart surgery. We weren't expecting them to want to reoperate so soon. We thought she'd be coming home first. I was a little shaken when I heard the news but I really believe this is her best hope for a healthy life. The doctor I spoke with yesterday said things like "you don't have to do this. You can choose to stop now if you don't want this for her. " Unless you've been through something like this it's hard to understand how much a child fights. One reason Chuck and I have held it together through this is because Lucy seems to know what she has to do and she sucks it up. She fights everyday. And the days she's tired and doesn't want to try, it weighs on us. We are all tired of watching our little girl live in the hospital and get cut open again and again but we really feel like there is hope for her. Lucy will most likely be flying to Stanford. We're hoping to be able to stay at a Ronald McDonald House. I don't even want to think about how we're gonna get through this one.

Sunshine!

Lucy got to go outside 2 days ago for the first time in almost 2 months! She loved it but was a little freaked out.





- Posted using BlogPress from my iPhone

Walk for CHD

It's almost been a week since these were taken. Last Friday my sister Carlie decided that the family was going to participate in a walk for congenital heart defects. She and my mom and my mom's friend made shirts for over 30 people. My whole family and Chuck's whole family went. I was so touched. I was with Lucy at the hospital and I really wish we could have been there.

































- Posted using BlogPress from my iPhone

You're Fired!

There is a lot of Lucy news that needs updating. After Lucy's cath that was done 9 days ago they learned that Lucy's diaphragm had been injured and would require another surgery to repair it. Everyone told us that doing the surgery would likely help her to breathe better on her own. It was actually a relief to hear that something could be done to fix it. Also, I may have mentioned this in the previous post, a cardiologist told us he strongly recommended us sending her information to other surgeons. We've had a lot of issues with Lucy's surgeon. He's new to this hospital and his communication with us and her attending physicians has been horrible. On Monday we complained to the attending that he hadn't come to see us after almost one week of knowing there had been a surgical complication. The guy ended up calling me and we had a yelling match over the phone. He ended up hanging up the phone on me. Cool guy. Chuck and I met with him the next morning. There was also another doctor, a nurse practitioner and 2 nurses in the room. I was grateful. There was a little more yelling, just on my end. He told us he didn't think fixing the diaphragm would do any good and he didn't think doing another open heart would be worthwhile but then he proceeded to tell us when he'd operate. You know, this guy might be right, doing more surgery might not do any good but don't tell me you're going to operate when you think it's a bad idea. He then told us if we wanted to send her records to someone else, he would just move her right away. We were shocked. What a responsible guy. Let's move her to Stanford while she's still sick. He told us to think about it and then he left.
First of all, if they do do another open heart surgery it probably wouldn't be for months. Did this guy really think we'd want to go wait in Cali for months. We have made plans to have Lucy's records transferred. They will have a meeting on Wednesday to decide what the best plan for her is. We have switched surgeons here at Primary. We really like him. We asked him if he'd feel comfortable doing Lucy's open heart surgery. He told us if it were his child he'd send her to Stanford. So there you go. I think what we'd really like is to have her diaphragm fixed here and then hopefully go home for awhile. Then once she's ready, go to Stanford. I have a feeling things won't work out hat way. I guess we'll have to wait and see.


- Posted using BlogPress from my iPad

Cath update

A quick update on Lucy's cath. Things went really well. They were able to get her left pulmonary artery open with a balloon instead of using a stent like they were expecting. This was really good news because the stent may have been damaging to her already crappy lungs. Some of the bad news is that Lucy's left diaphragm isn't functioning which may need to be corrected with surgery later on. We're hopeful we won't need to do anything. We were also told that her right collateral artery is providing significant blood flow to her lung and he believes it's in Lucy's best interest to reoperate to get it. We were a little confused because the cardio thorasic surgeon told us he wasn't sure about the surgery. The cardiologist recommended we get a second opinion from one of the leading surgeons in the country. So we're planning to sending Lucy's records to Stanford where there is a surgeon who has made cases like Lucy's his whole profession. I've heard only good things about this guy. So that's where we stand now. We're finally working on getting Lucy home and healed up to get her prepared for another open heart probably in the next year. They showed us images from today's cath and it's amazing how much blood flow they diverted.
Lucy amazes me. We were able to walk her down to the OR where we dropped her off. She got teary eyed and waved goodbye before we ever said anything to her. She just knows. This girl goes through so much crap and somehow still loves us and still trusts us.