It was another relatively easy day for all of us. The four of us trucked into Boston at the crack of dawn and were sitting in the MRI waiting room at exactly 7:30am. We checked in and then waited an hour for a nurse to come get us. I have to tell you...I would say the single worse part of all of this hospital stuff is the wait. Children's Hospital is probably the mecca of medical talent, and you can see it in the multitude of nationalities represented in the patients and their families, but the trade-off is you wait, and wait and wait some more to talk to the doctors. In the case of this mornings wait, the doctors somehow were not informed that we were in the waiting room. Oh well. Least of our problems.
I brought Luna in, and Sienna and Daddy stayed in the waiting room. Once in the patient room I was 'debriefed' on the day ahead. Luna was to be first given an oral sedative to make her drowsy and then they would strap-on the oxygen mask and enter the lines into her veins. Foolish Mama, but I only today realized why they had to completely knock Luna out. This was so they could control her breathing during her MRI, and most importantly, artificially stop her breathing in order to blast off several rounds of photos of her lungs. Since her lungs are such a big deal in the surgery, and her heart condition in general, they needed to be recorded completely and totally still. This hit me like a ton of bricks at 8am, but the nurses all seemed like, 'sure, we stop her breathing and snap off her photos, no big deal'. Like this is something I used to require of couples when I shot weddings. Seriously, that's how calm they were about it. This gave a whole new meaning to 'hold still for the camera'. So, after that nugget of news, they proceeded to give Luna the oral sedative. This had to be the cutest part of the entire day. Hopefully you've never seen a baby drunk, and certainly it's no laughing matter, but under the circumstances I think it's good to find laughs in between all the scary stuff. After just one dose of the pink liquid, Luna immediately started swaying. She sits up now. (Well, almost. Someone needs to be right near her in case she topples over). Well Little Lu sucked back that medicine and she immediately started swaying, giggling and blowing raspberries. I mean, this would have been a winner on AFV, seriously. She continued on in this drunken manner until her eyes drooped shut and her body finally caved to the 'happy juice'. It was adorable. I thought to myself what a perfect way to be whisked away from Mama. (and how could I get my hands on some during tomorrow's surgery).
Once Luna was wheeled away, the three of us had exactly three hours to kill. Park, TV and lunch and we were back. When I returned to the room Luna was sitting up in the hospital crib wearing her johnny, watching TV and looking strangely adult-like. Once she saw me I was greeted by a huge smile. She looked puffy, and still had some lines in her, but otherwise she was great. In fact, the doctors were telling me as she started to come-to during the echo she awoke happy; cooing and gnawing on her oxygen mask. I'm not kidding about this, either! When I saw this child is chill...I mean it!
The end of the day was comprised of waiting and waiting and waiting some more. Luna nursed and fussed out a bit but then fell asleep. Sienna by now was pretty much losing it (been up since 5am, it was 3pm-no nap, you get the picture), so the nurses brought her up to the nurses station and let her 'answer phones'. I can just imagine that phone call...
Finally Dr. Brown came in and said the photos looked great. Her left pulmonary artery is pretty kinked, so they'll fix that, along with removing her shunt and performing the Glenn (bringing down the Superior vena cava vein and tying it into her pulmonary artery).
We got home around 5pm and the girls played as usual. Just another day. Tomorrow Sienna will stay behind with her Grandmother and the three of us report to the hospital for an 8:15am surgery.
Tuesday, September 23, 2008
Monday, September 22, 2008
The Glenn is upon us.
I can't believe it, but we're here. Today was pre-op, and honestly, it was a breeze. Maybe I'm just getting used to hospitals and all the tests, but seriously it was e-z. Mama is pretty tired and I have a fresh baked apple pie waiting for me in the kitchen (that Memere made today. She even etched L.V with a heart in the crust, I mean, seriously, how sweet??)
This morning Paul, Luna and I all hit the road at 6:15am for a 7:30 arrival at Children's. Naturally we hit traffic so we were an hour late. But it was fine. The day consisted of an EKG, blood work, then a weight, height, sats, and blood pressure check. Luna continues to grow well (as I said before this babe can eat, eat, eat!!)
Her vitals were perfect. Strangely her sats have improved, despite the fact that she has more than doubled her weight and almost her height. I say strange because as the babies grow, they begin to outgrow their temporary shunts. For whatever reason her sats range from 86 all the way up to 93 (!!).
Her weight is 15.5 lb and she grew a whopping three and half inches since our 4 month appointment. She was born at 19 inches, then she hung out at about 23 inches, and now she is 26.3 inches!!
Along her getting her vitals we talked with her card, and anesthesiologist and several nurses.
The rest of the week goes like this:
Tomorrow: 7:30 am arrival for anesthesia so she may have her MRI and echo. I was a little bummed to find out that rather than ingesting the oral sedation she had for her last sedated echo, Luna will actually be put under general anaesthesia. Yuck. This of course requires her to 'come to' in a recovery room. All for good cause, that is to keep her totally and completely still for the MRI so the doctors may see all organs before she goes in for surgery.
Wednesday: 7.30 am arrival for surgery. We're in the first slot, which is good, less waiting around.
Tomorrow Sienna is joining us, so the four of us will go in together. The hardest part is Luna can't eat after 1:30 tonight. And as I said, this baby can eat.
That's all for now...think happy thoughts for us!
This morning Paul, Luna and I all hit the road at 6:15am for a 7:30 arrival at Children's. Naturally we hit traffic so we were an hour late. But it was fine. The day consisted of an EKG, blood work, then a weight, height, sats, and blood pressure check. Luna continues to grow well (as I said before this babe can eat, eat, eat!!)
Her vitals were perfect. Strangely her sats have improved, despite the fact that she has more than doubled her weight and almost her height. I say strange because as the babies grow, they begin to outgrow their temporary shunts. For whatever reason her sats range from 86 all the way up to 93 (!!).
Her weight is 15.5 lb and she grew a whopping three and half inches since our 4 month appointment. She was born at 19 inches, then she hung out at about 23 inches, and now she is 26.3 inches!!
Along her getting her vitals we talked with her card, and anesthesiologist and several nurses.
The rest of the week goes like this:
Tomorrow: 7:30 am arrival for anesthesia so she may have her MRI and echo. I was a little bummed to find out that rather than ingesting the oral sedation she had for her last sedated echo, Luna will actually be put under general anaesthesia. Yuck. This of course requires her to 'come to' in a recovery room. All for good cause, that is to keep her totally and completely still for the MRI so the doctors may see all organs before she goes in for surgery.
Wednesday: 7.30 am arrival for surgery. We're in the first slot, which is good, less waiting around.
Tomorrow Sienna is joining us, so the four of us will go in together. The hardest part is Luna can't eat after 1:30 tonight. And as I said, this baby can eat.
That's all for now...think happy thoughts for us!
Monday, September 15, 2008
"My Bama"
With the election less than two months away it's hard for anyone to ignore the all-out media circus going on between the candidates. This includes my 2 1/2 year old as well.
Our morning ritual is this: Paul is up and out of bed at the crack of dawn. I sleep in ('sleep in' being used lightly, as in till maybe 7am) until Sienna wakes me up. And this is the dialog that I am awoken to. Every morning. Seven days a week.
"MAMA!"
"MOM!"
"MAAAAAAAMMMMMMMAAAAAHHHH!"
By now I'm rustled slowly from a dream and begin to realize that Sienna is not calling me from across a vast, grassy field; but in fact she is in the very next room and wants out from her crib.
"MAAAAAMAAAAHHHHH!"
Then a loud thud. And I know from past experience Elephant has been hurled across her room.
"MAAMMAAAAAHHHHHHH I need a diaper change!"
Yes, you would think that when a toddler tells you she needs a diaper change that it's time for the same toddler to lose the Pampers and hit the potty. Not this toddler. I'm pretty sure she'll be wearing her diaper well into the winter. And yes, she does turn three this February.
Finally I stumble into her room and pull Sienna up out of the crib, peel Elephant from off the floor, and change her diaper (Sienna's, not the Elephant's). I deposit Sienna onto my bed, then it's off to get her milk and on the re-bound retrieve her sister. Luna is typically awake in her crib, yet laying still and quiet as a mouse. When I lean over to reach for her, she gives me a big toothless smile and pounds the matress with her chubby leggies.
The three of us flop into bed together, and if Sienna lets me, I put on Good Morning America. Lately the story is about Obama, wife Michelle, Biden, McCain or Palin. Each time Obama flashes on the screen I say to Sienna, "that is Obama. He is running for president and Mommy and Daddy are voting for him"
So, this morning was no different. Us girls laid in bed, and each time Obama appeared on the screen, I would say, "That's Obama". and Sienna, in perfect two-year-old spirit, would fire back, "No, MY BAMA!".
Our morning ritual is this: Paul is up and out of bed at the crack of dawn. I sleep in ('sleep in' being used lightly, as in till maybe 7am) until Sienna wakes me up. And this is the dialog that I am awoken to. Every morning. Seven days a week.
"MAMA!"
"MOM!"
"MAAAAAAAMMMMMMMAAAAAHHHH!"
By now I'm rustled slowly from a dream and begin to realize that Sienna is not calling me from across a vast, grassy field; but in fact she is in the very next room and wants out from her crib.
"MAAAAAMAAAAHHHHH!"
Then a loud thud. And I know from past experience Elephant has been hurled across her room.
"MAAMMAAAAAHHHHHHH I need a diaper change!"
Yes, you would think that when a toddler tells you she needs a diaper change that it's time for the same toddler to lose the Pampers and hit the potty. Not this toddler. I'm pretty sure she'll be wearing her diaper well into the winter. And yes, she does turn three this February.
Finally I stumble into her room and pull Sienna up out of the crib, peel Elephant from off the floor, and change her diaper (Sienna's, not the Elephant's). I deposit Sienna onto my bed, then it's off to get her milk and on the re-bound retrieve her sister. Luna is typically awake in her crib, yet laying still and quiet as a mouse. When I lean over to reach for her, she gives me a big toothless smile and pounds the matress with her chubby leggies.
The three of us flop into bed together, and if Sienna lets me, I put on Good Morning America. Lately the story is about Obama, wife Michelle, Biden, McCain or Palin. Each time Obama flashes on the screen I say to Sienna, "that is Obama. He is running for president and Mommy and Daddy are voting for him"
So, this morning was no different. Us girls laid in bed, and each time Obama appeared on the screen, I would say, "That's Obama". and Sienna, in perfect two-year-old spirit, would fire back, "No, MY BAMA!".
Friday, September 5, 2008
Update on Luna
I know. It's been almost a month since I posted. What happened was Luna was scheduled to have her Glenn in August. Then, because the surgeons at Children's couldn't accommodate her (I think the Big Guns were on a much deserved summer vacation), and because she is doing so well, her surgery was pushed back to September 24th. I had mentally prepared myself for being on the other side of this by now, so when she was pushed back I took a break from heart stuff. Luna hadn't had a single doctor's visit in six weeks so, really, it was nice to enjoy the entire summer with a our new baby. Just yesterday was her first visit to the card in weeks. Here is the lowdown:
Just shy of 6 months old, Luna weighs exactly 15.2 lb and is smack-dab in the 50% percentile! This is ah-mazing. I was in the 50% percentile at her age (hurrah for Mom for keeping such good records), and I'm not even a special heart baby! Truly, this is no small feat for Miss Lu.
In regards to the last statement regarding Luna's weight. SHE-EATS-ALL-THE-TIME!!! For real. This kid can eat. I'm still nursing her. In addition she typically has about 8 oz. of formula/day, two servings of rice cereal, then any combination of peas, bananas, prunes, sweet potato, carrots and I'm sure I'm missing a few. Luna is a big eater...just like her Mama.
Her surgery is September 24th. My friend Sarah told me 24 is her lucky number, so I'm going with that. Pre-op is Monday the 22nd. And the 23rd Luna will undergo a MRI on Tuesday so the docs can check out all her organs before they go into surgery.
Yesterday at her appointment she had an echo. The doctors also checked her pulse, blood pressure, sats, and weight. Her sats are still hanging right at 85 which is perfect and where they've been since birth. All other vitals were perfect too. The three of us; Sienna, Luna and me all went together. Sienna had a blast. Cindy, the echo specialist played Happy Feet on a big screen TV while Luna was stretched out on the bed for her echo. The lights were dimmed (really to see the echo, but as far as Sienna was concerned it was just like the movie theatre) and lolly pops were passed around. Luna conveniently fell asleep so Cindy was able to talk me through what I was seeing on the monitor. She explained to me what the grainy black and white images meant on the screen. She showed me how Luna's LPA (left pulmonary artery) is looking real good-despite the narrowing. Both arteries show 'turbulent flow'. The very word 'turbulent' sent a spike of fear through me, since naturally all I can think of is being jostled around an airplane at 3000 feet-and as my husband knows from flying with me-is my single biggest fear. In Luna's case her shunt is blasting the blood into her arteries artificially, much like an overflowing funnel. Cindy, the echo 'reader' (and wow is that an art, seriously I often can't make heads or tails of what I'm seeing) explained to me Luna's blood flow is more 'aortic rather than pulmonaritc'. So, in Luna's case, too much push and not enough pull. The Glenn will correct that, and make it so her flow is much like yours and mine.
While Luna's heart is malformed, or 'unique', the heart itself is never touched during the surgeries. Instead it's all about rerouting blood flow and working on normalizing and stabilizing her circulatory system. So, really we can think of Luna as undergoing a sophisticated form of plumbing. Only the pipes are of the human variety.
Thursday, August 7, 2008
$42, 944.32
I'm just now cleaning my office. It's been a while and it's trashed. I guess I take after my dad in that respect. There are just so many better things to do than organize paperwork.
In going through piles and piles of unopened mail I found one envelope with Boston's Children's Hospital listed as the return address. It dates back to June 29, 2008 and states:
Account #XXXXXXX
Account balance: $42, 944.32
This is to inform you that a claim for the below referenced patient has been submitted to your insurance and as of this date, we have yet to receive payment, or a response to the claim. In attempt to resolve issues related to the delay, your assistance is requested in contacting the member services department of your insurer.
Luna Ruth
Service dates: 04/27/08-04/29/08
Sincerely,
Patient Financial Services,
Children's Hospital Boston
Um. Okay.
I checked my calendar and sure enough the dates correlate with Luna's balloon cath. She was in the hospital for a total of two nights. And received blood work, X-Rays, lung scan, anaesthesia, and of course the balloon cath.
Since we never received another notice (though I do still have a mountain of discarded mail sitting on my desk) I assume this was resolved. It seems so long ago. Paul was at a different job at the time. We no longer carry the insurance referenced. I suppose at some point some clerk at Blue Cross ponied-up the 43K. But I wonder if unbeknownst to us, there was a moment, much like the Michael Moore film SICKO where some worker-bee was instructed by her higher-up to toss the bill to the side for a few good billing cycles.
One wonders.
In going through piles and piles of unopened mail I found one envelope with Boston's Children's Hospital listed as the return address. It dates back to June 29, 2008 and states:
Account #XXXXXXX
Account balance: $42, 944.32
This is to inform you that a claim for the below referenced patient has been submitted to your insurance and as of this date, we have yet to receive payment, or a response to the claim. In attempt to resolve issues related to the delay, your assistance is requested in contacting the member services department of your insurer.
Luna Ruth
Service dates: 04/27/08-04/29/08
Sincerely,
Patient Financial Services,
Children's Hospital Boston
Um. Okay.
I checked my calendar and sure enough the dates correlate with Luna's balloon cath. She was in the hospital for a total of two nights. And received blood work, X-Rays, lung scan, anaesthesia, and of course the balloon cath.
Since we never received another notice (though I do still have a mountain of discarded mail sitting on my desk) I assume this was resolved. It seems so long ago. Paul was at a different job at the time. We no longer carry the insurance referenced. I suppose at some point some clerk at Blue Cross ponied-up the 43K. But I wonder if unbeknownst to us, there was a moment, much like the Michael Moore film SICKO where some worker-bee was instructed by her higher-up to toss the bill to the side for a few good billing cycles.
One wonders.
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