12 Apr Update
Keegan has been cleared from a cardiology stand-point for anesthesia on Tuesday. His echo looked fine Thursday, as we expected. Monday, we will go in early in the morning for more labs and pre-op stuff. If his liver numbers spontaneously come back to normal by then, we can always cancel the biopsy for Tuesday. If not, we’ll go in Tuesday morning for the biopsy and be admitted overnight for observation. We think Keegan will be back on the floor where he was before, so it will be nice to see his nurses again. The doctor said that we should expect preliminarly results from the biopsy by Wednesday, and then it will be several days to a week for the more detailed analysis by electron microscope. We’ve just been trying to keep busy this week in anticipation of going back inpatient next week. It had been chilly and rainy most of the week, so we didn’t do a whole lot to tell you the truth. We had to go out to find some clothes to wear for Easter tomorrow, since I hadn’t really anticipated being here that long originally.
Yesterday, Keegan and I took Mamie out to the North End for a good Italian lunch. It was a much nicer day than the first time we headed to that part of town. This time, we were able to walk more of the Freedom Trail. Lots of people were out and about due to nice weather and being Good Friday and all. We saw the Copp’s Hill Burial ground, where the British camped out to rain artillery on Charlestown during the Revolutionary War. Robert Newman, the man who hung the lanterns in Christ Church (Old North Church) to signal how the British were coming to Paul Revere, is buried there, along with many who fought in the War. It is on a beautiful hill overlooking the Harbor and Charles River. We stopped in Old North Church, where one of the lanterns still remains with an eternal candle burning. We ate some yummy pasta and even better gelato (Keegan even sampled some)! We continued along the Trail to see the Granary Burying Ground; Paul Revere, John Hancock, Samuel Adams, and Benjamin Franklin’s parents are there. We walked by the Old State House and Old South Church, where the meeting that led to the Boston Tea Party was held and Ben Franklin was baptized. Wow, it’s tiring just to type it all out. Keegan was a trooper though and made it the entire day without a pacifier, which Mama accidently forgot, oops! As long as he was allowed to get out and push the stroller every now and then, he was pretty darn happy with himself.
That’s about all the news fit to print right now. We’re hoping Keegan will make it through Mass and a quick brunch tomorrow. Then, it’s just getting ready for next week. Mamie will be going home Wednesday, and Gray will hopefully be able to get a flight up by Wednesday night. It will nice to have Daddy back with us, especially during a stressful week of tests. We just wish he could bring Rusty with him!
I still wish I had something more insightful to say at this point, but I guess I’m just stuck in survival mode. I can’t help but feel that we just can’t get ahead. For all the moments that feel so normal, there are worries that each move Keegan makes is an indicator of an infection or liver failure, fixing beeping pump alarms, answering phone calls from the hospital five times a day, etc. I have tried to get “used to” this being our life, being our “normal”, but sometimes it’s honestly just a little tiring and disappointing, frankly. I sometimes wonder if people even remember that Keegan’s just a child, who shouldn’t have spent the last seven months in the hospital or have to take medication every day to keep his heart and intestines from revolting. Sorry to have a pity party today, but I guess it’s worse around holidays, especially ones where you’re not home with your family.
And yet, we wish you all a very joyous Easter…and we hope it’s warmer where you are than here! We are thankful for the love of our Lord and Jesus’s sacrifice so that He could rise again to provide us with the gift of everlasting life. The promise that our trials on this earth will be forgiven in our eternal life with Him.
Maddie
p.s. Don’t miss a few new pictures of Keegan from this week. We’ll post some more later with our mini-egg hunt and Easter Sunday later, so keep checking!