Calvin’s Story

Site created on October 29, 2020

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. 

Calvin was born with Congenitally Corrected Transposition of the Great Arteries (L-TGA). L-TGA is a rare form of congenital heart disease where the lower chambers of the heart (ventricles) are switched, and his left ventricle is on the right and his right is on the left. We found out about his heart about halfway through the pregnancy where they were noticing something while doing ultrasounds to measure the progress of him. I ended up having to come to Abbott for an echocardiogram and learned about what specifically was going on with his heart and what it meant for the rest of the pregnancy and what delivery would look like. Calvin did not like the plan and surprised us almost 8 weeks early on June 28, 2020. We were in the NICU for six days and transferred to the Special Care Nursery at Children’s until July 21st when we were able to take Calvin home.

On October 26, 2020 Calvin had a follow-up appointment with his cardiologist. Unfortunately, they did not feel comfortable sending him home due to the right side of his heart appearing larger and rounder than they would like it to be with his condition. This is where the next chapter in Calvin's journey begins and we will continue to do our best to provide updates as often as we receive them and can!

Newest Update

Journal entry by Meghan Boe

Hello hello!

Wednesday at about 10:00 AM the team decided to extubate Calvin since he was trying to wake up so badly and all of his stats were strong. Narcotic pain medication was weaned off prior as well. He went back and forth for a few hours of trying to be awake and moving to sleeping. He has a strong pull to roll and sleep on his tummy, but with his sternum he can't quite be in his desired position yet. After extubation Calvin's oxygen levels slowly went down and were hovering in the high 80's to low 90's. Ideally they wanted him at 98 or above with his tube out. His nurse Kaitlyn, who we had since he got into the ICU was amazing at being at his bedside and watching his monitors carefully, brought in the respiratory specialist to assist and try some things to get his oxygen to go back up. For about two hours we had his team coming in and out monitoring his status and trying to help too. His oxygen kept decreasing and his heart rate was increasing while fighting the interventions. The team decided it was best to reintubate him, which they did around 1:15 PM. It was impressive the amount of people he had working on him at once. Blake counted about 16 people in the actual room with about 5-6 people in the hallway running back and forth with medications and machines. They got pain medication going again for him, reintubated, and did an echo and an x-ray to see if there was something internally happening. Luckily, they were both as they should be and the doctors believe he was letting them know he was not ready yet and needed more time. His doctor decided to give him a paralytic to paralyze him since he was still fighting the breathing tube and causing his heart rate to spike. They described it as giving himself a stress test and passing, which is a positive that he did pass it and it means the changes to his heart can handle it already. Lots of reassurance that with his surgery it can take his lungs time to getting used to the new set up as well and they are hopeful for a “smooth landing” on the next extubation. 

An eventful day, but Blake and I are extremely grateful for the attentiveness and action his team showed. Many made comments on how strong he is because of the amount of medications it took to sedate him and the stress his heart was on while trying to intubate again and get his body to allow it to do its job. For now, he is resting comfortably. Mom & Dad went on a date night to the Red Sox game tonight!

Friday Morning Blake and I were able to be apart of rounding and get updates for the weekend plan which is going up on sedation and down on the paralytic. Calvin appears to always need a lot of sedation because he is “robust” as they like to say. Leading up to his surgery he had a band put on his pulmonary artery to help it gain muscle to handle the pressure of going from having less to do to quadrupling its need for the body. His left side of his heart now is still needing time to adjust to its new role and pressure that comes with it. The doctors spoke about him having Left Ventricular Hypertrophy, which is common for the anatomy of his heart now. They were not surprised that he is struggling and want to be patient with him. They began some feeds Friday afternoon via his G-tube and are keeping his stomach tube in while they begin the feeds. Based on Friday’s rounding, they were thinking it’d be at least a couple days before extubating.  Earlier in the day we got a call from the company that helped us set up our hotel stay in Boston offering up tickets for the Red Sox game tonight. After we had just gone to one the night before we asked that they try to find another family that might want to go and if no one claims them we would. As luck would have it, no one wanted to go to the game! Mom and Dad got to go to two in a row! Different sections and it was fun to see that stadium from different areas. When we told the nurses that we were going again they were extremely excited for us.

It’s Saturday now and we have a hang out day in Calvin’s room. Overnight feeding went well for him and they are going to go up on the rate of his feeds today. Still on a heavy amount of sedation medication. He is no longer on the paralytic medication to keep him from moving so we are beginning to see his arms and legs wiggle. The heavy sedation is to help him keep resting, but to also keep him still. Nurses have commented on how strong he is because even with sedation medication he tries to roll over. We got to see his surgeon this morning and he mentioned that they are being cautious when it comes to extubating him and trying to see what happened last time to make his body react. No definite date of removal, but Blake and I guess within 48 hours. They are continuing to give Calvin diuretics to get more fluid out. They are monitoring the levels throughout the day and believe it will help when he comes off his breathing tube. He was given the order for his chest tube to be removed and the surgeon hopes that the removal of that discomfort will help when they extubate next. We were told he can hear us and are encouraged to talk with him quietly and not get him too riled up. Majority of this weekend will be resting and watching hockey and basketball with his parents 😊

Blake, Meghan & Calvin

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