As Mike and I walked down our road hand in hand we couldn't help but ask each other if this was all but one big bad dream. How could the last 52 days turn into a beautiful Saturday afternoon 2 weeks post transplant together as a family. It's like our brains went on autopilot and we just existed, now we have woken up to a whole new world.
September 18th Mike and I spent the morning together in his hospital room. People coming in and out, going over education, and checking off all the boxes to move towards discharge. The Pharmacy team came in and laid out all his medications; 20 new bottles to keep track of. They lined them all up in two lines explaining each medication; medications you need to take daily, and medications that are as needed. Out of the medicaitons that he needs to take daily there are 29 pills and 1 liquid; we were told this is on the lower end of what most people go home with. Then the team diligently went over each medication again letting us know the brand name and genertic name, dosage he needs to take, why he is taking that medication, and side effects of each one. Mike then filled his new pill box following a medication grid that they had printed out for us. We cannot say it enough, the team at Corewell Health and the Heart Center are amazing. They ensure you are comfortable with each and every step and set you up for success.
After this our Transplant Coordinator and the nurse came in and let us go home. Just like that we loaded up a cart with our lives from the past 49 days and got in our vehicle and drove home. What a weird feeling that was! I had driven that route over 80 times and now Mike was sitting in the car with me. We pulled into our driveway with our boys cheering behind a huge Welcome Home sign in the front yard. Could this really be happening? Could he really be home? Mike hugged his boys and we started to settle into our new life. Mike and I took a stoll around the cul de sac and a sweet neighbor sent us a picture. It is so good to be home!
The next day we went back to the hospital...just for a clinic visit though. Mike will have lots of clinic visits in the next year, weekly for the next 5 weeks. These will also include right heart caths and biopsies of his new heart. It is so important to check and recheck for rejection. Most people have some level of rejection during the first year. The doctors will catch it and treat for it, but that doesn't make it any less scary. Mike's immune system is nonexisit, they told it to sit down and shut up for right now. He will slowly gain some of it back, but he will always be immunocompromised. Right now we are not taking visitors. We are so excited to celebrate with friends and family when the time is right and we feel comfortable doing so. Thank you so much for the cards, texts, messages, gifts, meals, and love. We appreciate our village and people we don't even know loving on our family during this time.
I am taking the next few weeks off to help with Mike's transition and be his caregiver 24/7 for the next 4 weeks. We check vitals twice a day, take medications 4 times a day, I pack and dress his impella wound once a day, we walk 4 times a day, and he has PT and OT exercises daily. There are lab draws, clinic visits, and heart caths weekly as well, he cannot drive until 6 weeks post transplant. Not to mention I now have to feed him at least 3 times a day! The first day home I almost forgot to send the boys off to school...oops! It may be a lot and a new kind of tired...but it is so good to have him home!
The boys are loving having Mike around. I am truly impressed on how grown up they have become. One of the first things Blake did when Mike got home is to read through his post transplant binder. Blake has become an expert on the do's and don'ts of heart transplant. He has been checking labels for foods Mike cannot have and has willingly been wearing a mask around the house since he has a cough. Easton was given the opportunity to go with some friends to the Hawk Rally and High School Football game. I was encouraging him to go until he voiced his reasons. He was concerned because his dad, brother and myself would not be able to attend and have fun. He was also concerned that there would be so many people and what if he got sick and brought that home to his dad. A very grown up response for such a little boy. I worry about the lifelong trama and effects that all this might have on Blake and Easton as they grow up. I am thankful for what they did not have to see and withdure during this time. We learned on our last day in the hospital that the Heart Failure Team was very close to putting Mike on ECMO, he was so very sick and he got his heart in just the right time.
A friend sent me this verse the first week after Mike was in the hospital. After looking more into it I found that this verse is called the Heart Transplant verse of the Bible.
"I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh" Ezekiel 36:26
God took Mike's old heart that was quickly become stone and gave him a new one. A heart full of love, life, and the Spirit. I found the perfect shirt for Mike's return home to help celebrate such an amazing gift. We thank God everyday for this miracle of life, our friends and family, and for the Holy Spirit filling our hearts. We pray that this blog and journey is filling your hearts with the power of Jesus as well.
Happy 2 Weeks With A New Heart!
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