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
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