Well, I certainly meant to wish my beautiful Bug, Keegan, a happy birthday yesterday, on his real birthday, but young sir has kept us quite busy the last few days. Thursday evening, we started to see some clear drainage coming from his nose. We didn't think much of it - didn't have a fever, didn't seem too lethargic, wasn't coughing, sneezing, tachycardiac, or breathing too heavily. Everyone we know is suffering from allergies, and the cedars lining our house to the west certainly don't help. Friday, it was worse, and he had no energy, high heart rate, and was breathing pretty quickly. After a very short nap, he woke up with a temp just under 99, and by 4pm, he'd spiked to over 101. We let the transplant team know, but I was busy setting up for his birthday party and trying to finish icing three dozen banana cupcakes. At 5pm and with about 8 cupcakes left to decorate, our transplant coordinator called back to tell us we needed to bring Keegan to the Legacy ER for a flu swab and blood cultures. Grrr. So in the pouring rain, we ran across the street to the ER. The attending doctor was standing in the door of our room as we came in and had calculated the days we'd been ER-free. Gee, thanks. Flu swab was negative. A nurse suctioned the heck out of his nose, and after 4, yes 4, attempts at a line for a blood draw, a finger prick came back with some wonky numbers. By 9:45pm, his heart rate had come down from the 220 range; he was breathing better, and three pages to the transplant attending had gone unreturned (thankfully, our cardiologist was not the one on call). Gray and I said "get us out of here, and we promise to bring him back the second he goes south". Luckily, the ER team at Legacy knows us well enough (5 visits in the less than 13 months they've been open, and we spent 9 months inpatient and in Boston in between), that they handed us our walking papers.
By Saturday morning, Keegan had noticeably more energy and wasn't draining as much. We called all the party invitees and decided to celebrate the momentous occasion if all were comfortable coming. And party we did! Keegan received a ball tent and wiggle tunnel from Mama & Daddy (don't tell him his occupational therapist recommended it for upper body strength!), which he seems to really enjoy. Y'all may remember Hurricane Ike blew through on last year's bday, and it poured down again this year. Not to fret, we simply blew the baby pool up in the den, filled it with balls, and the kiddos had a grand ol' time.
This year was a monkey theme, and instead of gifts, the attendees donated money towards some new wagons for the hospital. In honor of Keegan's second birthday and transplant anniversary, we are ecstatic to be able to donate THREE wagons to Children's Medical Center due to the generosity of our family and friends. Thank you so much! BDAY PICTURES ARE UP!! ENJOY!!
Today, Keegan was still draining a bit but gradually improving. We've been in contact with his team, and the cultures and PCR continue to be negative. They have alerted the cath on-call team for tomorrow about what happened, but it will be up to the anesthesiologist in the morning to determine if he/she is willing to intubate him for his annual catheterization and biopsy in the morning. While this yearly event is exhausting and nervewrecking, we desperately want to get it over with tomorrow and not have to postpone due to a runny nose. If all goes well, we'll post tomorrow when he's out of the cath lab. This will be Keegan's 28th time to receive general anesthesia in the last two years, and each time presents us with renewed fears, especially as he has had trouble with his oxygen levels the last few times post-op. Ironically, I'm more afraid of being admitted this time due to blood issues than rejection. But I guess that's a good thing.
To my sweet son - Two years ago yesterday, I waited in my hospital room, with no baby to hold, wondering what the future held for you, hoping that in two years, I would be celebrating your birthday with you. On this day and at this time two years ago, I was waiting to see you again after you had been gone over 10 hours in the OR, and as I watched a machine keep your blood going, I again wondered if I would get to celebrate this day with you. I never in my wildest dreams thought the life of a transplanted child would be the one we would live, but I am thankful every day for this walk, whatever it brings. Today, I still wonder if and pray that in two more years, I will celebrate this day with you in my arms. It's a fear I will never let go of but one I am more comfortable with as you show me how strong you are. I love you so much more than I ever thought was possible. I love your smile and your laugh, but most of all, I love your heart.
To Kevin, LaMonica, Kingsley, and most of all, Johnston - I couldn't have said a single one of these things without your love and sacrifice. My greatest fear is one you faced with courage, selflessness, and the grace of the Lord, Jesus Christ. Happy Birthday, Johnston. You are our strength.
O Lord, you are my God;
I will exalt you and praise your name,
For in perfect faithfulness, you have done MARVELOUS things,
Things planned long ago.