Day by day. 

Yesterday (Monday) was a long day of ups and downs. Brooks had his epicardial pacer leads taken out of his chest at bedside - probably the second most painful thing he’s had to endure since he’s been here. One of the epicardial leads was stuck and they had to retrieve extra help from a provider to remove it at bedside. However, after the epicardial leads were removed, Brooks was able to move around a lot better. We went on many walks throughout the halls as Brooks met many new friends in other rooms. We were also able to take the kids to the play room in the step down unit which really helped break up the day. 

Yesterday afternoon they performed an echo to see the result after surgery. They did an intra-operative echo during the surgery which showed a significant improvement in his heart after they carved out some heart tissue. To keep it simple, it appears the main downstream obstruction that was there before surgery is now mostly gone. However, there is a way way smaller obstruction more upstream to the previous distal obstruction that was seen on the echo yesterday. We discussed this finding at length with the cardiothoracic surgeon, Dr. Dearani, and all the cardiologists. Long story short, they’re not really concerned about it - may relate to being in a postoperative state, intravascular volume status, etc. Conservatively, they decided to start him on a small beta blocker dose just to help slow his heart rate down and potentially improve the small residual obstruction that is there. This is a way smaller dose of beta blocker than he was on before the surgery. He’ll continue to take this medication as an outpatient for the meantime. 

And speaking of being an outpatient! After getting out the rest of his IVs and central line today, he was discharged from the hospital this afternoon! Incredible how a kid can have open heart surgery on a Friday and be discharged from the hospital on the following Tuesday?! Uncertain if we’ll stay in town the next day or two just to be close to the hospital if something were to arise - tbd. 

Despite an excellent surgical result, this is unfortunately not a “cure” for Brooks’ heart condition (hypertrophic cardiomyopathy) as the muscle can grow back overtime and he may very well need another septal myectomy in the future - time will only tell. However, hopefully this procedure will give him the best chance to live as near of a “normal” childhood life that he can and also help his chances of avoiding a heart transplant or cardiac arrest later on in life. It is comforting to know that we have the Mayo Clinic and the world’s expert, Dr. Dearani, on our team if something is needed in the future. We will follow up with Mayo as well as Childrens Cardiology in Omaha the coming weeks to reassess his treatment plan. More information about hypertrophic cardiomyopathy can be found at https://4hcm.org (https://4hcm.org). 

The last couple of weeks have been such a roller coaster. Emotionally, we are drained. The amount of fear and helplessness you have when your child undergoes open heart surgery with bypass is indescribable. This was, without a doubt, the most difficult task in life that Jack and I have both taken on. Throughout this journey we have gained such an appreciation for the gifts we have in life that we often take for granted. We are again so thankful for all the prayers and support we have received over the previous weeks. We ask that you continue to keep our family in your prayers and we will certainly be praying for all of you. We are so grateful. Thank you all so very much. 

A special shout out thank you to both sets of grandparents for helping us tackle this together and for watching our other children. 

“Don’t lose heart. I will never forsake you. My Immaculate Heart will be your refuge and the way that will lead you to God.” - Our Lady of Fatima to Lucia.