Home Sweetheart Home

My apologies if you didn’t catch it on facebook or other social media, but yes, we made it home on Monday. Medically, Sunday was uneventful, which is a good thing. Winston did get to spend all day with the grandparents fighting over getting to hold him! He didn’t mind one bit, and it gave Emily and I a chance to go to church and lunch with some new KC friends. Winston also had visits from some former PICU favorites, as they anticipated his departure on the horizon.IMG_5421

The doctors on rounds were leaning towards discharging W on Monday, maybe even Sunday if the blood had not occurred in his diapers. So when Monday rolled around, we were anxious and ready to go. Winston has returned to his happy self, is alert, and wants to go go go as well (for a non-crawler, that’s squirm, roll, and arch his back). Getting discharged would seem simple: say the word, go over home care, sign the papers… but it just doesn’t ever happen quite that smoothly due to too many other intangibles. There is a lot of packing up to do, cleaning up the Ronald McDonald House room (which grandmas have always taken care of for us, so no complaints here!), getting meds squared away through the pharmacy,  waiting on final results from the last echocardiogram and ekg, and making sure everyone is on the same page… the attending, the cardiologist, the rhythm specialist, etc..  So finally after one more room service lunch we were heading for home sweet home.

It seemed a bit surreal to be leaving so soon after Winston had heart surgery less than a week ago! 40 days the first time around, plus two other “visits” contributing 2 more weeks to our stays, and it just doesn’t seem possible. They do anticipate post-surgery recovery time to be 5-10 days with the Glenn, but you never let yourself get your hopes up heading into it. Even with all the steady progress during the recovery, Emily and I just kept looking at each other thinking when will “the other shoe drop.” Thankfully and prayerfully, this stay did not involve as many ups and downs as the first time around.IMG_5429

One of the biggest blessings and joys for us is the return of W’s personality and activity! He is “talking” and “singing” up a storm and he loves to carry on “conversations” with us. No more did we lay him down on his blanket when we got home, then he rolled over onto his chest. The doctors tell you it is fine, but you look at the incision from the sternotomy and have to wonder! The smile on his face tells you everything! These kids are tough… the rest of us would whine if our clothing caused the incision some discomfort.

It is easy for us to slip into the pity party and crave for “normal.”  As tough as our journey has been, and it is not over yet, we know every kid and every family at Children’s Mercy has a story. We crossed paths with families in February who are still there. We know another family who made it home, but need in-home nurse care almost 24hrs a day. This week, we met a family just settling in as they prepare to do battle with a heart tumor. The morning we were discharged, we watched a CM helicopter land on the roof and deliver a new patient, with a new story. Emily and I both have friends who have walked away from the hospital having lost their precious children… I can’t even pretend to know what that feels like but my eyes well up knowing the possibility, knowing how fortunate we are, knowing we don’t deserve this anymore than anyone else. So even though the stories play out differently – the heartaches, emotions, and feelings stem from the same place. A wholehearted parent’s love. No one is giving half of what they got. They hurt with their whole heart. They love with their whole heart. So our hearts, prayers, and thoughts remain with the families still there, still to arrive, and the stories still unfolding.photo-1

If you find yourself having a pity party about your current journey, go walk those hallways… you don’t even have to go to a floor or an ICU, just sit in the lobby and watch the wagons roll by. You will count your blessings, big and small, very quickly. CM has a colorful fleet these wagons that you can tote your child and stuff around the expansive facility. Every wagon is filled with hurt, fears, questions, doubt, and a personal story. Those wagons have to be pulled by hope. And I don’t know how you walk these hallways without eternal hope and knowing that God is good, all the time. He knows each and every story even before it unfolds. Each of these kids are fearfully and wonderfully made. There is a peace in knowing that and a peace that I hope every family there finds.

6 thoughts on “Home Sweetheart Home

  1. Chad…You are amazing!! Well…you, Emily and your entire family continue to amaze me. I admire you more than you know. You write so well and from the HEART!! Keep up the fight, dear friend. Love to see the pictures. Please keep them coming.

  2. Thanks for sharing this. The 3 of you inspire me! Praying God’s continued blessings on each of you. Can’t wait for the day we get to meet Winston!

  3. You should think about writing a book; you have a wonderful story to tell: glory to God and encouragement for other parents who are or will walk in your footsteps.

  4. Thanks for sharing this well said storie , I pray for your Winston, I too have a grandaughter with hypo plastic left ventricle she is two this month, CM is a amazing place, and the nurses are the best..enjoy every moment with your beautiful baby..prayers..

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