Three whole weeks with a new heart...it still amazes us and I don't think it will ever stop amazing us!
Our first week and a half home has been an interesting one. I think the boys and I were on autopilot for quite awhile and now that Mike is home our bodies caught up with us. Blake got a nasty cough and cold the day Mike had his transplant. After talking with the doctor and seeing the doctor it is decided that he has a viral cold that will take a long time to get rid of, three weeks in and he is still coughing. Easton is on day 3 with a fever and developing that nasty cough as well. I had a sore throat (negative for step) and am trying so hard to not get this cough and cold from the boys. With this, Mike has been enjoying some alone time in the basement, wearing his mask in the house upstairs, and using the warm weather to spend time with us as we walk up and down our street. Definitely not how we saw Mike's homecoming going. We are longing for the day we can eat meals together, play games, and spend time together....it will come, but not quick enough.
This past Monday Mike had his first post transplant right heart catherization and biospy. We will have these every Monday for the first 4 weeks, biweekly for 6 weeks, monthly for 3-4 months, and then every 3 months until the first year - throwing in some other tests and procedures as well. These days are a bit long and exhusting to say the least. Every time he gets a biospy we will wait a couple days for the results of rejection levels. Let's talk about rejection...
Some level of rejection is common with a transplant. It just depends on the level. There is a scale of 0-3 that is team uses.
0-no rejection, 1-mild, 2-moderate, 3-severe - 0 and 1 does not require treatment, 2 is usually treated by tweaking medication, and 3 is usually treated in the hospital. Our Transplant Coordinator has assured us that she has not seen any 3's at our clinic.
Mike came out of his heart cath with some mild pressures around his heart. This means that he has some extra fluid on board; which we have noticed in his feet, legs, belly, and face. We also have seen some weight gain during his daily vitals. This is due to some of the medications that he is on, the fluid on board, and the fact that he has an appetite now and he loves his wife's cooking! We are working on his fluid build up by taking some water pills, wearing compression socks, and watching his salt and fluid intake. He also has a level 1 mild rejection. This news was a little daunting at first because of course we looked at his MyChart results that came in at the end of the day and had to wait all night and morning until the doctors met and came up with a plan with his transplant coordinator....we will not be doing that again...probably!
Beside the illness in the house, the never ending snacking, the exhusting day of appointments and procedures, and the anxiousness of waiting for the biospy results each week....the third week with a new heart went well! Mike is walking everyday up and down our road for 2-3 miles total. The neighbors come out to say hi, cheer him on, and let us know they are praying for us. When we bought this house 12 years ago we didn't know the blessing that it would be to us on so many levels. We dreamed of our boys walking to and from school, but we didn't know that they would need to walk due to me needing to be with Mike at the house. We dreamed of good neighbors, but we didn't know that they would donate time and money to us, pick up our kids for cub scouts and walk them to school when one is sick. We dreamed of a home that could have different spaces to play and entertain, but we didn't know that it would be a safe space for Mike when the rest of the house is sick. We dreamed of a yard that we could play in, but we didn't know that it would be a space for us to heal and decompress in. We dreamed of a home where family is nearby, but we didn't know that my entire family would move within five minutes of us. Before we moved Mike and I and my family went through every room and prayed a blessing over our house. God has blessed this home more than we could ever dream possible.
We visited 5 Heart today and gifted the amazing techs, nurses, PAs, Doctors and people of 5 Heart with some homemade banana chocolate chip muffins, two personalized drink caddies, and a gift card to Starbucks. Now they can get their favorite drinks and carry their group orders in one trip. We hope they enjoy this small token of appreciation, they have touched our lives forever and we could never give them enough thanks. We were able to chat with some of our favorite people and wow them with Mike's progress. We hope to visit again and see even more familiar faces.
A special shoutout! We are very thankful for my mom, Carla, who has been there for us and our boys throughout the entire process. She has taken the boys on multiple occasions, has gotton us groceries, random tylenol bottels, snacks, meals, and has been at every surgery/procedure with me in the waiting room. She has committed to coming every Monday to our home very early in the morning to take care of the boys, get them off to school, and then wait for them at the end of the day to walk home from school. She even gave me a little time off today to get my nails done and visit with a friend. She doesn't even think twice to helping us...but we think about her selflessness and love every single time. Thank you mom!
Don't get me wrong - we have so many people who have and are supporting us. Aunts and Uncles that have taken the boys and spoiled them (so many times)/are are here in a flash with anything we need, a sister who supports from far away in many ways/including getting the boys body pillows with Mike's picture on them to snuggle with when he was in the hospital, a mom whose love is not measured by distance and doesn't care if she drives to and back in one day/keeps our birds fed and windows cleaned/pantry stocked/and let's us want for nothing, a dad who push mows our yard/fixes everything/takes our boys for bike rides (even if they don't want to lol), and friends that are here for us in every way possible. We are so thankful for the texts and messages of friends and family who cannot be with us during this time. Your words, prayers, and thoughts are heard so loud in our home!
On to week 4 and forever more!
The boys having breakfast with 'Dad' while he was in the hospital...I wouldn't have even thought of such a neat gift!
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