Post-Cath Follow-Up Appointment

Natalie had her post-cath follow-up cardiologist appointment with Dr. Brauner this week. Her oxygen saturations were in the low 80's. I was a little surprised, but contributed a little of that to her being not as hydrated as she probably needed to be. We had a long ride into Anchorage the day before and spent the rest of the day shopping. It's hard to keep hydrated when you're busy. I still feel good about where Natalie is at with her energy level and sats now. I looked over some of her doctor's appointments since she turned one and almost all of them she had saturations in the 70's.

We discussed the pros and cons of waiting as long as we can for the Fontan. Without going into detail, lets just say that it was a sobering reminder of the life-long, delicate balancing-act there will be to keep Natalie's little heart functioning at peak performance.

Since she had her big collateral plugged, Natalie has not wanted to take naps. She seems to do pretty well during the day without one. We went for a three mile hike last week and she walked at least a mile and a half of it. I think that's pretty impressive. Of course she took "rests" in the backpack and stroller from time to time, but that didn't dampen her desire to walk and explore. When we got to the lake at the end of the trail, Natalie enjoyed wading in the COLD water. Her color waned a little, but stayed pink for the most part. I've also noticed that her lips don't turn as purple after she eats too.
Post-cath instructions required no strenuous activity for five days afterward. It was hard to keep her down. She wanted to be thrown in the air by her Uncle. She tackled her brother. She jumped off the couch. She wrestled with her sisters. She ran around like a crazy maniac! Other than the bruise on her neck and the bandaids that she insisted be left on her groin for the full five days, no one would have guessed that she had gone through the cath. It was funny how she counted the days until the bandaids could come off and she could "wrestle."

(Heidi was the brave one and went all the way in the water.)

(Warming up on the canoe.)

( The river that we crossed three times.)

We are so thankful for Natalie's renewed energy and we are pushing the Fontan surgery to the back of our minds for awhile.

Ten Years Ago...

Ten years ago today, I carried my wedding dress into the church during a thunderstorm. Approximately six hours later, my husband and I left with sun on our cheeks and a shower of bubbles being blown in our faces. What a memorable day. Everything happened as it should have and God blessed our marriage.

I want to thank the Lord for my gentle and fun-loving husband. God has done (and is doing) a work in both of us to mold us together and make us one. Thunderstorms or sunshine, God will teach us His ways as we kling to Him as the center and designer of our marriage.

Honey, I hope this is a happy tenth anniversary for you!

A Picture is Worth a Thousand Words

Look at those pink nailbeds! They're beautiful! That's with O2 sats in the upper 80's and hitting 90%

The bottom, purple number is her oxygen saturation.

Red lips and pink cheeks. Waiting four hours post-op to be released.

Natalie being goofy, showing off her oxygen/induction mask that the anesthesiologist made for her. This is the mask that she breathed the "orange gas" through. We are keeping it to practice for the Fontan surgery. (It's a kitty if you can't tell.)

Hugging the giraffe.

After we were discharged from the surgery center, Natalie wanted to go see the fish again. So, we went to the cafeteria to eat some lunch and watch the fish. Then, we toured the hospital to look at all the animals...bringing back old memories.

Post-Cath Report

What a whirlwind of three days we've experienced! I'm sorry that I didn't update on the cath results sooner, but after we were released from the hospital on Thursday, it was time for a nap, then another rushed day on Friday to get home for cake and ice cream for Tim's birthday. I had typed out the pre-op info while we were waiting for Natalie to get out of the cath, but was interrupted by the pager going off announcing that the doctor was ready to talk with us.

Natalie did great going into her heart cath. She was a little apprehensive to start out with, but then when she realized that she was being doted on by the staff, she warmed up. I was able to suit up and go back to the cath lab with her until she "went to sleep." The nurse anesthetist said that she had a surprise for her when she got into the cath lab and there laying on her little pillow was a white little kitty. That was just the thing Natalie needed to get her through and ever since, she's been carrying her little kitty around.

They gave Natalie orange gas to go to sleep and she didn't fight it at all. (She must save all that feistyness for her parents and siblings.) All the invasive procedures, like IV's, are done after she's asleep so she didn't remember any pokes-so nice!

As the wait began, Tim and I went to get some breakfast. We had to be at the hospital at 6:15AM (that was 5:15AM our time) which just seemed like a continuation of the day before. Then we headed up to the Family Resource Center where I got on the computer and Tim did his Sudoku. It's amazing how fast a little pager can make you jump when you're waiting. The pager went off and we packed up to head back down to the surgery center.

(Quick lesson of what a cardiac catheterization looks like on a picture-A small tube is threaded through the blood vessels, vein or artery, until they get to the desired area where they want to look. Then they inject a dye that is radio-opaque, meaning it shows up as a dark area on x-rays. Since blood carries it in the direction that it is traveling, you can see where the vessel is taking the blood and how large the vessel is.)

We met with Dr. Jones who presented us with pictures of what he had done. He said that her pulmonary arteries looked really good. There wasn't any narrowing or stenosis that he could see. The pulmonary arteries are the blood vessels carrying the blue blood to the lungs to pick up oxygen. The Glenn site looked good too. Below is a picture from the cath that Dr. Jones enhanced with drawing in the vessels around the lungs and Glenn site.

(The little bump on the LT PA is scar tissue from the Sano shunt that they placed when she was two weeks old and then removed at her Glenn surgery.)

What Dr. Jones did find was a blood vessel that came off of the innominate vein that was dilated and atrophied. It was allowing a large amount of blood to bypass going directly to the lungs through the superior vena cava.

Imagine you have to fill up a large tub with water. You have a small bucket with a hole in it. You fill the bucket up, but as you run with your bucket of water to the tub, you are losing water the whole way there. It takes you longer to fill up the tub because of the hole in your bucket.

So what Dr. Jones did was take a mesh plug to occlude the extra vessel so all the blood would be directed to the lungs.

What a difference that made! Natalie came out of recovery with an oxygen saturation of 90%!!! I don't think I've ever seen her that high. Her feet were pink and lips were red! I couldn't believe it. I was skeptical thinking that it must be that the anesthesiologist gave her something that increased her sats. I've become so used to seeing Miss Natalie with dusky gray feet and purple lips that her color amazed me. I thought, the real test will be when she starts to run and play. We made it with her walking through the airport with pink lips (even though she still breaths heavily). Going down to Seattle she would want to walk through the airport, but would stop to lie on the benches every twenty yards or so to get caught up. Her oxygen saturations still dip when she is active, but not as low. I keep looking at her feet when she's playing...they don't make it to the egg plant purple color variant anymore. It's so nice. I have to think that she feels better too.

We did discuss the Fontan surgery with Dr. Jones. He said that this cath procedure should give her at least another year. "The longer you can wait, the better," he said. He said that once you do the Fontan, the count-down begins as to how long her heart will last. I still have a lot of questions about this, but am confident at this time that we've done the right thing and will continue to live life to it's fullest...while we wait.

Research

Natalie qualified to be a participant in a research project that is being headed up by Dr. Gordon Cohen (the surgeon that preformed her first open-heart surgery) called Identification of Neovascularization Biomarkers. "This study is being done to try and identify a protein that is produced by your liver. We believe this protein exists in all people and is involved in the regulation of blood vessel growth. Identifying this protein could hold important implications for the treatment of heart disease, cancer and other diseases." (Taken from Seattle Children's consent form.)

Because Natalie was having a heart cath, they were able to take blood samples from different areas in and around the heart to see if this protein exists and how high the levels are. Because of her single ventricle circulation Dr. Cohen believes that her biomarker levels may be lower than in regular circulation. The exciting aspect to this research project for single ventricle patients is that they are hoping to find a way around the pesky collateral blood vessel growth that post-Glenn single ventricle patients deal with. Dr. Cohen and his team think that this protein inhibits blood vessel growth. In people with post-Glenn circulation, there may not be enough of this protein released into the areas around the heart and lungs. This may be why the collateral vessels grow. Identifying this marker could lead to treatment being developed that would keep the collateral vessels from growing in post-Glenn single ventricle patients. If Dr. Cohen's theory is true, a simple supplementation of this protein for children like Natalie would keep them from having frequent cath procedures to coil off collateral vessels.

We're glad that Natalie was able to participate in this research project and look forward to hearing the outcomes in the future. Pediatric cardiology has come a long way in the past thirty to forty years, especially in the area of treatment of single ventricle kids. It's exciting to think of the extra years that research could bring to these kids lives!

Cath Day Pre-op Pictures

(Sorry these pictures are so out of order. I still haven't figured out how to get them in order or move them within my post.)

We finally got a smile out of her once she had her Looney Tunes hospital gown on and as being doted over by the staff.

Waiting in the airport for our flight to Seattle.

Waiting in pre-0p area. Natalie wasn't interested on looking at the camera.

The "I know this is a different place than I'm used to getting my blood pressure taken at..." look.

Daddy and his girl.

We Made It

It was an early morning yesterday-4:30AM-when my husbands alarm went off. The four hours of sleep that I got between 12:30 and then were going to have to be enough for that day. It was a beautiful day to drive the 3-1/2 hours into Anchorage and catch our flight to Seattle. Natalie was all excited about flying on a big plane, but anytime adults started discussing her or "when to get there" she became unusually quiet and tucked her little head to the side. She knew something was going on. As special as she felt being the only one of her siblings to go with her parents on a big plane, she knew that it was unusual and kept asking where Heidi, Jessie and Craig were.

We had a variety of pre-op phone calls that we took on the road. It's a little tricky to get the communication that is needed from the hospital when we are traveling the day before.

Natalie and I sat by an older gentleman on the airplane. He was very kind and asked if she could hold his hand when we took off because he got scared during take-off and landing. I thought he was just being accommodating until after we got in the air and he relayed that he really does have a fear of flying. Natalie was so sweet with him and held his hand and he watched her cartoons with her.

We were greeted by sun and the infamous Mrs. Greene at the airport. What a treat to have a personal chauffeur. We skipped staying at Ronald McDonald House this time since we are only here for an outpatient procedure and will be here for two nights. The Greene's are out hosts with the mosts!

Seattle is so different than any place that I've lived. The neighborhood community aspect is neat. We went for a two block walk to the store...yes, Walgreens is really just around the corner. Natalie had a blast taking everything in. Compared to Alaska, it feels like we're walking through a botanical gardens here in Seattle. We stopped to smell the roses, looked through the quaint little shop windows, slid down a huge slide, watched a man playing violin on the sidewalk and took in the differences in the masses of people. Natalie loved it. She didn't want to go home when it was time, though she would time from time to time and have to be carried. "I tireed. I want you to hold me," she'd say. (We're hoping to fix that while we are here.)