Another Boston adventure
Yet another Boston adventure is coming to an end for me. It’s amazing how quickly a week goes by here yet the hours can go by so slowly at times. Hopefully my next trip I can finally put away the winter coat and not have to buy another hat. I’m starting to get a nice collection of ugly cheep hats as it seems to be the one item I keep forgetting to pack and 30 degrees here just feels much colder than 30 degrees at home. This trip’s ugly hat looks like I’m wearing my black cat Harris on my head but it was the only hat left in the store that covered my ears and only set me back $2 thanks to an H&M gift card. It did grab the attention of a cute little young guy soliciting red cross donations. After he just had to pet my hat and chatting a bit he kindly gasped at my age telling me I must by lying and another dramatic gasp at the fact I had triplets and looked so amazing. Who knew a bulky wool overcoat could be slenderizing? I gave him the short story of our family and he told me God must have met for us to meet since he was going through a rough time and our story inspired him to finish his degree in musical performance (he’s a professional flutist and does know how to play the jazz flute but prefers classical) and get his life back on track. And yes of course his flattery worked and the Red Cross got a donation.
I spent 2 days at an interesting conference on Pediatric Behavior Medicine so now I’m pretty sure I’m an expert at diagnosing all friends and family members’ children with new and fun diagnoses regarding what quirky behavior they’re up to at the moment. It did give me a whole new level of paranoia when it comes to raising teenagers and all the problems they can face. Makes me appreciate my babies even as they are entering the “cat herding” phase of development and would be easier to go out and about with Harris and Pepito.
My other interesting Boston adventure for the week was going to a church service with my friend Stacy whose little girl Avery is also being treated by Dr. Jennings for EA. We decided to go next door to the Sunday service at the Longwood galleria city community church. They had a guest speaker who was a phD in microbiology and works for the Institute of Creation Research who gave a very interesting and intelligent talk on how science can back the evidence for creation without falling into the dinosaurs hanging in the garden of eden camp. Even more interesting was the Q&A session afterward when the molecular biology atheists came forward to speak their mind. Got a bit heated. I tried to offer Stacy $20 to ask if Jesus rode a dinosaur but it was a no go. Definitely not the church night we thought we were getting but made for an interesting point of discussion.
As for the Divine Miss Lyd, everyone keeps saying ho much better she looks than when she first came to the CICU. I think I’m really glad I wasn’t with her a couple weeks ago because I don’t think she looks terribly hot right now. She still has a big puffy head, ears, jowls and trunk. She has pitting edema above her ears and doesn’t look like my girl. Her skin is pretty ruddy colored as if she just came in from sledding only wearing shorts. In the cath lab last Wed. she had a device placed in her pulmonary valve to block the blood flow to her lungs as she was over circulating to her lungs making them sicker and causing her to retain so much fluid. It seems to be helping somewhat as they’ve come down a bit on her vent settings and she’s gotten a bit of fluid off. Her cardiologist Dr. Brown says so far it hasn’t been as dramatic a response as he hoped for. The plan this week is to see how much response they get on her lungs and edema and then will decide if she needs to go back to the OR to but a band around her new shunt. We are hoping this is not the case as that means yet another open heart procedure and then worrying about the delicate balance of her getting too blue if she begins to outgrow the band. As she’s shown time and time again, she’s a confusing kid and leaving the best experts in the country at debate for her best course. So yet another week or two of watch and wait and see how she responds.
She’s been awake only a small amount (mainly in the middle of the night) and I’ve only gotten a half small smile out of her. I can tell her eyes are pretty glazed over still and she’s not focusing all too well. She’s been off the IV Versed and Morphine for a bit now and getting Methadone and Ativan in her J-tube. I knew she was on a whopping dose of both but it wasn’t until the nurse brought in 7.5 Ativan tablets (most adults take 0.5-1 tablet at bedtime for anxiety) to crush and give her every 4 hours that I realized just how much she was getting. We may have to transfer her to Dr. Drew celebrity rehab after we break out of this place. We have been getting in some good snuggle time and she completely relaxes in my lap and seems pretty comfy. Also got a little dress up time in as she’s modeled some of my old dresses and sunsuits and her new “Tough Cookie” pink camo onesie. Stylistically she remains top dog bringing back some retro early 80’s styles mixed with the modern baby look.
On a happy note to report, Lydia’s boyfriend Gracen will be going home to South Carolina this week. He turned 2 in Feb and was transferred to Boston in May 2009 for EA. Their family will all again be in the same city and he’s not too far from being at home. We will miss them as they’ve been good cheerleaders for us along the way and have given us a lot of support and encouragement. The next visit for Gracen and Lydia will be an ice-cream date by the beach!
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