6 months post DS

We have had a busy summer and the kids are already back at school and into the groove again. Some of the activities Nicholas took part in are:

Before camp

After camp

Boy Scout Camp: Nicholas spent 8 days at camp, only 12 weeks post surgery!! He got to do lots of fun activities and earned several merit badges. He had the time of his life just being a boy and enjoyed every minute of it. Mom was at home worriying almost the entire time, but was glad he had fun and welcomed him home with open arms!

Upper Blue Lakes with Sienna and Liberty

Camping: At the end of July, we went camping at one of our favorite spots, Upper Blue Lake, which is a secluded lake south of Lake Tahoe. We spent a day with Beau (brother), and a few days with the Reno Pierce's (cousins). We had a great time fishing, relaxing, swimming, and bike riding. 

First day of school

New school year:  School started at the beginning of August. Nicholas is in 6th grade. 6th grade!! I can't believe we have a middle schooler! Nicholas is involved in Leadership and has some advanced classes. He rides his bike to school with a posse of friends. We are super proud of him. 

Baseball

Baseball

Baseball: Fall Ball started about a month ago and Nicholas is playing. He hadn't played much since he had to quit mid-season during 4th grade and didn't play in 5th grade. We weren't really sure what he could do, considering he was in heart failure for almost a year, and now has been in recovery mode for the last 6 months. He has proven to be a strong player and looks so good out there. He still needs to practice to continue to build his strength and skills, but under the circumstances, he looks amazing. 


We have a cardiology appointment coming up next week and to be honest, I have a lot of anxiety about it. Although Nicholas looks great on the outside, I can never stop thinking about his inside. I will worry for his entire life, regardless of how hard I try not to think about it. His resting heart rate is climbing and currently beats about 100 beats per minute at rest. Hopefully the check up will put my mind at ease. I know Nick is supposed to have a treadmill stress test at some point to check his heart function during activity. I'll keep you posted!  

1 Month Post Double Switch Update

It is officially one month since Nicholas had his Double Switch. Just looking at him, he's doing great! I have such a sense of relief that I haven't felt for months, if not years. Nicholas is looking so good. 

We saw Dr. Wright yesterday for a check up. He did not think we would need an echo or EKG since we had them last week. Dr. Wright thinks Nicholas looks great and as soon as we get the fluid off the lung, we will probably not need as frequent check ups as we've been having for quite some time now.

We'd taken a chest x-ray the day before to check the left lung, which has pleural effusion. We are trying to get the fluid off the lung and reduce the diuretic medication. Taking diuretics for an extended period of time can lead to electrolyte imbalances, which can directly affect heart function. The x-ray looked better than last week, so Nick's dosage can be reduced but not stopped. We will need another x-ray next week before another check up, and assuming that the fluid stays out of the lung, Nicholas should be off the diuretic within the next month. 

I completely thought that Dr. Wright would say that Nicholas should start going back to school, but he said he'd really like to take things slow and not push things too hard. Nicholas is looking kind of bored at home, and I know he misses his friends and the social aspect of school. He has been playing outside with friends in the afternoon, so that has been good for him. 

Not too much new stuff to report! 

First Week Home

We got home a week ago and it has been non-stop craziness since we walked through the door at 2 a.m. Not only was jet lag a problem, but we had to drive to Nevada to pick up Sienna, catch up on a huge stack of mail, pay bills, wash mountains of laundry, stock the refrigerator and pantry, and countless other chores. We have also had a few doctor's appointments, had to go to the kid's school to check in, and daily homework catching up has been very time consuming! I think some of you may be beginning to worry about us, and I apologize for that. I can assure you that all is well.

When we left Boston, we had several appointments the last few days we were there. Initially, Nicholas had a chest xray and an EKG. After all the tests were analyzed, Dr. Marx found that Nicholas had developed "pleural effusion", or water on the lungs on his left lobe. Because of this, Nicholas's Lasix dosage was tripled in an attempt to get the residual fluid out of his body. We had to go back two days later to check again with another chest xray and a blood draw. The fluid was still there so Nicholas's Lasix dosage was to stay pretty high. Nicholas had to have his blood chemistry checked that day, too, because when a person takes Lasix at a high dosage for a long time, it can mess up the electrolyte levels in the bloodstream, which can lead to cardiac arrhythmia's. Fortunately, Nicholas's blood panel looked good but our goal is (still) to decrease the Lasix to a point that he can stop taking it. 

Another thing that we determined in Boston at the end evaluation was that they would consider Nicholas to have borderline Long QT syndrome. Since I had sent them as much information prior to surgery as possible, they were able to compare his heart rhythm for several years before surgery, immediately after surgery, and the weeks after surgery while we were in Boston. Dr. Marx said that he thinks Nicholas might not have true Long QT, but that because of all the years of surgeries on his heart it might have caused his rhythm to perform differently than if he hadn't had all the surgeries. He recommended that six months to a year from now, we have Nicholas tested with a Holter monitor and exercise stress test to determine for sure if he has Long QT or not. Long QT syndrome is often-times the reason kids will die of sudden cardiac arrest during PE or while playing sports. In a true case of Long QT syndrome, a person's heart rhythm would lengthen, rather than shorten, during exercise. Obviously this is an important piece of information to be aware of, but we cannot really test for sure until Nicholas is all healed up. There are also certain drugs that are routinely prescribed for things like acid reflux and antibiotics for infections that are known to lengthen a person's QT and because Nicholas already has a "borderline long QT", Dr. Marx said he should avoid those certain medications for his lifetime. 

Nicholas has seen Dr. Wright here in Sacramento once already, and we go again this week. He had us take another chest xray before coming in and sure enough, the pleural effusion is still there on the left lung. We will go in for another xray and check up later this week. The really good news is that Dr. Wright said that Nicholas's heart function looks almost normal and that his Left Ventricle is performing like a normal LV. Dr. Wright was almost in tears seeing our boy after all these years of PA bandings and the heartache that came with those 4 attempts at getting Nicholas ready for the Double Switch. He said he couldn't be more pleased at the outcome and that he is so happy that everything has turned out as well as it is so far. 

Our heart warrior is getting stronger every day, and is looking more and more like himself. Nicholas is still healing, but daily activities are becoming easier to accomplish and he's closer to his old self every new morning. I am so grateful that he is eating well and looking so good. He has asked me a few times if he will be able to run as fast as the other kids as soon as he's healed, and I have told him that the only way to find out is to go for it! 

CHD doesn't go away once the surgery is complete, but I am hoping for a very long lull in heart issues for my boy. After he is done healing from the Double Switch, he will only need to see the cardiologist every 6-12 months for check ups. What a blessing this amazing and quick recovery has been! I am praying that the fluid in his lung goes away and he will be all healed up very soon.

Lastly, I want to thank anyone who is reading this who has been following Nicholas's story and praying for him and our family. We are so fortunate to have the best families, friends, co-workers, and community. Knowing that there are so many people who love and care about us is a very powerful thing. I hope that I have the opportunity to give back some of what has been given and shown to us these past few weeks and months. Thank you. I am forever grateful.

Recovery Mode

We have been here in Boston, still in recovery mode. After a couple days inside, we started to feel cabin fever and decided to rent a wheel chair so we can get around without pushing Nicholas's limits. Of course, Nicholas does not like sitting in a wheel chair and I think feels very self conscious when we go out. But there is no doubt that the fresh New England air is good for all of us. Nicholas looks better every day, and if you didn't know he had open heart surgery less than two weeks ago, you'd think we were just regular old tourists with a kid in a wheel chair.

Nicholas is supposed to take a few "walks" each day, so he mostly goes up and down the hallway of the apartment. He has gone up and down the stairs, and is getting stronger every day. I know he lost a few pounds in the hospital, and that will take some time to gain back. His muscles are not as strong as before, either, but I know he will be back to his regular self in no time. 

Our first day out of the apartment on Friday, we mostly walked around Boston. We went to the finish line of the Boston Marathon, which takes place tomorrow. I am so inspired by the runners and hearing the stories of people who've overcome such trials in their lives. This year marks the 5th anniversary of the Boston Marathon bombing in 2013. There will be celebrations of survivors, first responders, and people stepping up to help those in need when this beautiful city was attacked by those low life terrorists. 

As some of you might know, I ran the California International Marathon in December as a way to acknowledge the heart journey Nicholas has been on his entire life. I wanted to have something to focus on while Nicholas's heart was getting ready for his Double Switch and keep myself from going crazy, thinking of all the possibilities of what could be...what was to come. I trained from April until the CIM in December, and it was therapeutic to my heart and soul. Being here for the Boston Marathon makes me want to do it again; and I would like to raise money for the Ethan Lindberg Foundation as thanks and a way to give back for this experience they have given us with this Home Away From Home. 

At the end of our day out on Friday, we ended up at our new favorite restaurant ever, Carlo's Cucina Italiana. We enjoyed their delicious homemade Italian food. We had the same waiter as the time before surgery, and when Nicholas and Lorenzo went to wash hands, I told him that Nicholas had had heart surgery since the week and a half ago when we were there. He could hardly believe it, but told the restaurant owner and she personally came over to us and told him that she thought he was such a strong and inspiring little boy. She told him to pick whatever he wanted for dessert and it would be on the house. Of course we were all stuffed, but we made room for a homemade cannoli and enjoyed it very much. Lorenzo had a seafood pasta plate, and one of the shells looked like a heart, so I couldn't resist taking a picture. 

On Saturday, we checked the price of Redsox tickets and it was totally affordable so we decided that we couldn't be in Boston without seeing a Redsox game. The high was 50 degrees, but with the wind, it felt like 30. We were completely frozen by the end of the game. We should have taken in the clues of the Bostonians, wearing hats, gloves, and heavy jackets with multiple layers. Even though we were under dressed for the weather, it was so much fun and we enjoyed every minute of it. Well, almost every minute. Hahaha...

Today, on Sunday, it was literally freezing outside, even snowing on and off. So we purposely stayed inside. The highlight of the day was officially meeting Jessica and Eric Lindberg and the marathon runners. The four runners are heart parents, a nurse in the cardiac ICU here at BCH, and a physical therapist whose life was touched by a heart child. We shared our stories and made new friends with people who have been on this journey before us. Maybe someday we will be the inspiration for a family in their heart journey.  

Post Op days 6 & 7

On Monday, post op day 6, we had another day of checking tasks off the list to get another day closer to getting discharged. The day consisted of taking walks around the unit, eating and keeping it down, drinking tons of fluids, checking Nicholas's heart function with an echo, and determining the next step based on how he did on all the tasks. Needless to say, Nicholas was able to not only walk around the unit, but he went downstairs (well, down the elevator 8 stories) and ate a piece of pizza from the cafeteria! He could check off a few boxes of things after that! 

He finally stopped vomiting on Day 6. I am absolutely certain that it was because he had his chest tubes out the day before and they stopped giving him hardcore pain medication. Nicholas has always been super sensitive with meds and I was so glad to see him out of pain and the cycle of sickness he felt to "keep him comfortable". He even stopped taking Tylenol on Day 6! No pain medication six days after open heart surgery....unbelievable to me! He is so strong!

Dr. Marx increased the Lasix (a diuretic) because he doesn't want Nicholas's heart to have to pump any extra fluid around his body. So that was one change. The goal is to keep everything in a perfect range with medication and that the Left Ventricle will "remodel" as it gets more comfortable with it's new job as a systemic ventricle. 

We waited much of Day 6 for an echo to physically see how the LV is performing. They said that it looks even better than it did in the CICU. I have not seen any reports to see the statistics, but Dr. Marx thinks Nicholas's heart is looking better each day. We may or may not have an echo next week at the follow-up appointment, depending on all the other tests we will do then. 

Yesterday, on Post Op Day 7, we were told first thing in the morning that we would be discharged by lunchtime! We packed up all our belongings, discarded the linens I had been using while I slept next to Nicholas's bedside, and got more "presentable" to go out in the real world. 

I should have known that Murphy's Law is always applicable at any given time in life. Our nurse came in at around 11:30 and started removing all the remaining band-aids, tape, and adhesive coverings from Nicholas's skin. She took off a gauze from his groin, which was covered with a clear, plastic cover. As soon as it came off, I noticed a very large bruise in his groin which reached almost up to his belly button. I never saw it at any point while helping him use the bathroom. He had complained several times over the past few days that when he coughed he felt pressure down by his groin. So we really don't know how long the bruise was there, whether it was "new" or if it had been there for a while. Our Nurse Practitioner had to go investigate what type of "line" had been in that vessel, to determine if it was safe for us to leave. 

Meanwhile, the physical therapist came in and did a few tests with Nicholas and she said his strength was much better than the day she came into the CICU. She said the only other thing she wanted to have him do was walk up and down stairs since his bedroom is upstairs at home. He went up a flight of stairs and back down with flying colors!

Dr. Marx stopped by to see us while we were finishing up with PT, and he reiterated that Nicholas's LV is performing so well. He gave me a big hug and I expressed my appreciation to him for reviewing Nicholas's case all these years without any compensation and with nothing to gain from giving us his expert opinion. He is truly an angel to me. I don't think I can ever thank him enough. He said the greatest thanks would be to receive a high school graduation announcement and to be included in all of Nicholas's life's accomplishments. I think that is very doable! 

Back to the bruise. By 1:30 we hadn't heard anything so we ordered lunch for Nicholas because he was getting hungry and it didn't seem like we would be leaving any time soon. They came in around 3:00 and said they wanted Nicholas to have an ultrasound downstairs to make sure there wasn't any damage where the A-line had been in his groin during surgery. (An A-line is a wire-like thing that is inserted into an artery and attaches to the heart muscle to measure pressure. It is much more accurate than measuring blood pressure with a cuff on the arm.) We didn't head down for the ultrasound until 4:30. It was 5:30 before we got back upstairs, and we then had to wait for the radiologist to read the images to give us the green light to leave. After more time hurrying up and waiting, it was determined that the artery was healthy and the bruise was not due to a damaged artery. We have to watch it and make sure it doesn't get darker, and it should start to fade with each passing day. We have to stay in Boston for at least a week so they said to let them know if we have any concerns with it. 

We finally headed down the elevator to the ground level at about 7:30 pm. I feel such disbelief that we were walking out of the hospital a week to the day after major, complex open heart surgery. It is still a miracle to me!







We grabbed a pizza from the cafeteria since it was already late and we knew Nicholas would enjoy it. We called a Lyft and got a ride back to the apartment, walking through the door of our Home Away From Home at 8:02 pm. 

Nicholas had a few packages to open from friends and family, and after eating three, yes THREE huge pieces of cheese pizza, went to bed well on the road to a full recovery!

Overwhelming Gratitude

I hope I can write the feelings I have spilling over from my heart. I feel like I have witnessed a miracle. I came back to the apartment and I immediately felt a sense of peace and gratitude for this trip to Boston. Let me explain.

Back in November 2017, Nicholas had a cardiac MRI which showed that his Left Ventricle was functioning at 38%. Normal function would be anything over 55%. Prior to his last PA Band, his function was 69%. Immediately after his PA Band, the LV was functioning at 58%, which was not too surprising due to the very tight band which was attached to his Pulmonary Artery. 

Nicholas's LV was being trained for the Double Switch, to become his systemic ventricle. At the time of his MRI, his LV was pumping at pressures higher than his systemic Right Ventricle. The LV had increased in mass. But the actual squeezing of the blood out of the ventricle had decreased to 38%. Anything lower than 35% is considered heart failure. 

We reached out to our surgeon at Stanford and he felt like leaving the LV in this state was not going to cause permanent damage. He wanted to wait until summer 2018 to look at the LV with an MRI. He felt like if the LV was within a few percentage points +/- 38%, that it would indicate that the LV would be able to take over systemically. But he wanted enough time to pass between collecting data to determine if the LV stabilized. 

Meanwhile, we reached out to the experts in Boston. They have reviewed Nicholas's heart data multiple times throughout the years. Long story short, after gathering reports, images, phone calls, emails, and such from Sacramento and Stanford, we were able to get an appointment in the beginning of June to come for an in person consultation and later a potential Double Switch. 

June felt safe enough to me. It gave me enough time to plan and to prepare. Until the phone rang one Friday afternoon in mid-March when they called from Boston and said that they felt like the situation was more urgent. Not an "emergency" but "urgent". We had 10 days to plan to fly across the country to a place we've never been to; to figure out what to do with our other kids; to arrange for our absence with our jobs; to figure out how we are going to afford it all. 

I didn't purposely wait until the last minute to find a place to stay, but some of the other details were first to be dealt with. We needed airfare. We needed to arrange to be gone from work. We needed to arrange care for our younger daughter and pets. We had to get the kids excused from school for who knows how long. 

The last detail to deal with was a place to stay. Initially we made arrangements at the Holiday Inn, which was relatively close in proximity to the hospital. It ran between $155-$215 per night. I put out my plea to the housing people at the hospital and they sent me a few links to foundations that help families with housing when they do not live within the immediate area. I was very skeptical that anything would work out because of the super-short notice. I literally filled out the request sitting in my car before my last day of work. It was a Wednesday morning. We were to arrive the next day, on Thursday. We had our Holiday Inn reservations to get us through until the following Monday when we took Nicholas in for testing. 

Everything literally fell seamlessly into place.

We have been so fortunate to have an apartment that has been granted to us at a fraction of the cost of the Holiday Inn, by the Ethan Lindberg Foundation. This is part of the reason for my overwhelming emotions when I walked in today. I have been at the hospital for most of the last 7 days, only coming to the apartment to shower and change for a few hours. When I walked through the doors this afternoon, I could feel the love that this foundation has for us heart families. This is not an easy road to be on. We have this little piece of home that is ours while we get the best care in the world. There is a good chance that I will bring my boy "home" to this apartment tomorrow. He is doing so well. But the Lindberg family did not get to bring their boy home from the very same place. He lived much of his little life in that hospital, and didn't survive to go home to his real home. 

We have been so blessed and I feel like we witnessed a miracle. It is a miracle because Nicholas made it through the most complex open heart surgery. He has healed in record time. His heart is functioning well. Everything fell into place for us to be here. 

I have been so blessed to work for an office that understands the importance of family. I have been told that I shouldn't worry about anything while I am gone. What a relief it is to know that I have their support. They even pulled together and sent us with a cash donation on my last day.

We were gifted our airfare by my dad. When I called my dad to tell him that we were leaving sooner than later, I heard my dad cry and tell me it would be ok and he would help any way he could. I am so grateful that he got us here on such short notice.

My sister and sister-in-law both came up with a plan on how they could help take care of Sienna. Mind you, they both live in different states than us. Either plan was a good plan and knowing that they both would step out of their responsibilities to take care of her meant so much to us. 

Our older daughter agreed to stay at our house and hold down the fort. It is a great comfort to know that someone is there keeping an eye on things. 

Both my mom and Lorenzo's mom offered to help with Sienna. My mom sent a sweet package to Nicholas, which arrived at the hospital before we did. She is very thoughtful and hasn't gone a day without checking in or letting us know she's praying for us. I know that Lorenzo's mom is there to help us if needed and that she has also been praying non-stop for his health and recovery.

Lorenzo's sister made up a super sweet and thoughtful set of letters and pictures for Nicholas to keep him entertained and for him to know how much he's loved. Those letters will be so fun and inspirational for him to look back on when he's older.

The school PTA president heard what we were going through and she personally brought over a cash donation to help with our expenses while we are away from home. 

We are so grateful for Dr. Marx and Dr. del Nido here in Boston. Dr. Marx called us multiple times in California to discuss his feelings about the next step for Nicholas and has been very prompt to be there when we have questions now and going forward. Dr. del Nido is so gifted in what he does - pediatric heart surgery - and we are truly blessed that he crafted a better version of our boy's heart. One of his associates said that it's like Dr. del Nido can see what others cannot see for each patient he works on, and we are so blessed and fortunate that he did such an amazing job for our boy. 

There are so many people across the country, and even other parts of the world that have been praying for us. I believe those prayers are what have helped get us through this part of our journey. Thank you from the bottom of my heart for those prayers. 

~Brenna 

Post Op Day 4 & 5

On post op days 4 and 5, Nicholas has had multiple things to check off during the day. He has been working really hard to clear a bunch of mucous out of his lungs, and that entails using an incentive spirometer, walking, and coughing. Because he has had a lot of mucous trapped deep in his lungs, he has been coughing, which leads to gagging, which leads to heaving and vomiting, which leads to a rapid heart rate, and that has been the biggest challenge for the moment. 

Every step he takes on his own, his body gets stronger and the mucous loosens up and he can breathe better. His goal is to get out of the room and walk around the unit 4 times per day. So far he has reached that goal and he's looking more like his old self with each new day.

Nicholas has lost some weight, much of that is due to the gagging and dehydration. He doesn't have a lot of wiggle room to begin with, so he's looking really thin. He is afraid to take his medicine, thinking that it will induce the gagging, and so it has been somewhat harder to get him to drink and eat and take the meds. Hopefully he is starting to get over that cycle and he will start keeping everything down.

On day 4 we had the Chinese family on the other side of the room I mentioned before. Part of the reason I haven't updated is because the little heart warrior was literally up. all. night. long. talking to himself. From what I could gather, he was hallucinating and manic and not making sense to his parents. Sadly, one of the hardest obstacles for them was the language barrier. The hospital doesn't have a nurse or practitioner who speaks Mandarin, so communicating was next to futile. They could call remote translators on the computer monitor, which is good for them, but for us, it was very disruptive and loud and hard to be on the other side of the curtain.  I haven't felt so exhausted up to that point. I have a lot of compassion for them because he reminded me of when Nicholas had the paradoxical reaction to Ativan after his 3rd surgery. Only the poor little boy next door did not come back to being his normal self and after multiple satellite translators and different teams trying to figure out what was going on with him, they moved the family in the middle of the second night. 

On day 5, it was very similar to the previous day, except that the plan was to take out Nicholas's chest tubes at the end of the day if he was able to get rid of some excess fluid. Nicholas was very anxious for this to happen because it hurts extremely bad, but the amount of pain he feels will be reduced to almost nothing. They gave him a cocktail of Versed to give him amnesia and Morphine to help ease the pain of the removal. The time came for this to happen, and they took Nicholas into a 'treatment room'. Lorenzo helped the Child Life Specialist keep Nicholas distracted, and I watched them first remove the pacer wires; then they removed the chest tubes. 

The chest tubes were probably each about 15 inches long, and they wrap around inside the abdominal cavity, providing an exit for all the fluid used during surgery and all the excess fluid a person retains after surgery. Nicholas has never had two tubes before; so I stand to reason that he has been twice as uncomfortable this time around. When the NP got ready to pull them out, she literally wrapped the outside ends around her hands and got right over the top of him and pulled, almost like doing an exercise machine. She had to pull hard to get them out of there. Our nurse was standing by, keeping the holes closed as the NP pulled, so that air did not get inside his abdomen. They sutured the holes up, covered them with sterile gauze, and covered it with a dressing. Needless to say, Nicholas feels much better since they've come out. 

After the chest tube removal, we had to have another chest xray to confirm there is no air in the abdomen. A few more walks around the unit and that concluded the day. 

Nicholas is making such good progress. We continue to pray that he will have good heart function and that he will continue to feel more energetic with each day.