Gotta remember these…

While in the grocery last week, getting fresh flowers, I admired the tulips.  McCanless and I were trying to decide which color to brighten our Easter table.  After a few minutes of discussion, Mary Clare shouted from her seat in the cart, “Mom and Cannie, just get the Pink Lips and lets go!”

McCanless was sitting on the beach this week in the bright sun with a new bikini the Easter bunny brought her.  I heard her laughing and giggling to herself.

“What’s so funny, McCanless?”

She grinned and said, “Look mom, here are my gills.”

Unsure of what she meant, I turned to find her leaning to one side with her little chubby rolls lining her rib cage, creating her “gills.”

We both rolled in the sand laughing hysterically.

Easter 2011

Often, I’m asked, or told rather, “I don’t know how you do it.”

Honestly, I don’t either. Not that I have a choice in the matter, anyway. I’ve always been a “laid back” sort of person and I’m sure that helps. Acceptance is another huge factor. I’ve come to realize that although life isn’t exactly as I planned, it’s far more than I could have ever dreamed it would be. It is truly amazing. I’m not really sure why I’m asked that, honestly. I feel so lucky and so blessed with our life. Sure, the easiest path wasn’t just placed in our laps, but what we are able to truly see because of all of the bumps and curves of the path we are on is spectacular. The view is amazing and I wouldn’t want to see it with anyone else.

Wednesday, McCanless learned to ride her bike without training wheels! She’s had bikes for years, just never had the patience to “go for it” without the security of training wheels. She’s an all or nothing kind of girl. If she can’t go all the way, she’s not going anywhere. Her bike was out at my mother’s house, with a big grassy yard. She was so determined to get it, she fell and cried, and fell and cried and was so angry until she finally got it! Then, she was determined to perfect it! She’s certainly a determined soul. I pray for my patience with her every single day. I’m starting now, so when she’s a teenager, I’ll have reserves.

Mary Clare is slowly gaining strength. She’s playing outside with her big sister often (probably a little too rough) and having fun getting back into the swing of things. She’s asked to go to school, so I think she’s a bit bored with me.

She also had another seizure yesterday. At the time, I was in a bit of panic mode because it was so very different than any of her previous seizures. She’s been having her “tics” every day since being discharged from MUSC, something we’ve almost become used to. I write them all down and note the time to have a record. There is really no rhyme or reason. In fact, she only had two on Wednesday. I was hopeful that Thursday would be “tic free” day, possibly. She woke up around 9 and had two immediately. She had them about every two to five minutes. Mel went to work, McCanless was at school. I wrote down every “tic” she had until about 10, when we were playing in the sun on the back deck. She was at her sand and water table, and I had gone into the kitchen for a few minutes watching her out of the window. She came walking into the kitchen and was staring at the wall saying nothing. When I got on my knees to talk to her, she was staring right through me with that all too familiar face. Immediately, I grabbed her and ran to the den, where her “emergency backpack” was. As I tried to talk to her, she still stared into space and never responded to me. After about a minute, she seemed to pop out of it and grew angry with me because I “took her away from her sand table.” I called Mel and he and I both watched her for about 30 minutes. She had two more staring “spells” and had very strange behavior. She would be dizzy and talking like a baby, running around silly, then go back to normally playing at her table. It was very odd and very scary. I put in a call to her neurologist and just watched her. After thirty minutes, she curled up into my lap and fell asleep. She slept in my arms hard for an hour.

After talking to her neurologist and realizing that it was definitely a seizure, I’m prepared. It wasn’t one I have seen before, and I was terrified. Now, I know. We altered her Depakote and plan to talk to her neurologist regularly about her seizure activity. She’ll have blood work soon to determine the levels in her blood and we’ll go from here. Just like every other day. Each day is a new adventure with both of my sweet girls and as I’ve said, this path may not have been what I planned, but the view is spectacular and I certainly wouldn’t change it for anything.

MC News

Today, we visited our local pediatrician to have the last suture removed from Mary Clare’s chest tube site.  I didn’t realize how emotional I would be.  As Mary Clare and I walked hand in hand to the car, it hit me.  She has nothing left to complete from her Fontan!  Although her little body still has a long way to go, we are making it.   We are here.  Finally.  No more lines, leads, wires, tubes OR sutures in her little chest. (Visible, anyway.)  Nothing.  Wow.  How amazing it is that merely three weeks ago we were completing her pre-op day.  Three weeks ago.

I spoke to her neurologist NP yesterday regarding her Myoclonic seizures that she is having about 8-10 times a day.  They are sudden jumps/jerks that she has no recollection of.  They concern me a bit, but we have decided to give her current Depakote dosage another week to truly get in her system before we make any decisions.  I really hate to increase her dosage because she seems to be having a difficult time adjusting to it.  She gets dizzy and stumbles often.  She never complains but I can tell she’s not quite herself.  Sometimes, however, I can’t tell if she’s being extra MC dramatic because of everything that has happened or if it’s the Depakote, but I’m definitely noticing different mood swings.  It could be that she’s three.  She’s a girl.  She’s Mary Clare and she just had open-heart surgery.  Who knows at this point.  We’ll take our time and use her cues as to what she needs.  I am just so very thankful that she is able to be at home and recovering!

Speaking of “new normal”

We have our morning and nightly medicine ritual down so far.  MC certainly did not like taking her meds in the hospital, and still isn’t a huge fan of lasix, but every day gets better.  She is taking Depakote for her seizures- 125 mg in the morning and 250 mg at night.  (Which will increase every two weeks until we get to her therapeutic level.)  Her Enalapril twice a day- a BP medicine she’s been on since birth, her Lasix twice a day-for fluid retention and her daily asprin, of course.  Not too bad for two weeks post op.  We haven’t even had to give her any of her pain meds or even Tylenol.  Such a big girl.  McCanless has adjusted.  Or not.  I don’t think there was even a skip in her schedule.  She hasn’t missed a beat and doesn’t seem to be phased whatsoever.  She is amazing.  I am too lucky to have such adaptive girls.  They astonish me with their maturity.  We should all be so understanding.

Mary Clare has a horrible skin rash on her chest.  We called our NP and cardiologist last night and it seems to be a skin rash from all of the adhesives from bandages.  We removed everything but her steri-strips from her “scarf,” which looks amazing so far.  She always heals so quickly and so beautifully.   Her little bruised and scarred body is slowly recovering.  We also have another addition to our usual arsenal of meds for Mary Clare.  We have our Diastat, of course, to stop seizures in an emergency (which means after 2 minutes for her).  We’ve also added her O2 tank to her “goes everywhere with us backpack.”  Her Oxygen saturation levels are  still not as high as a healthy heart’s.  They hover around high eighties and low nineties.  Much better than before her Fontan, however!  (They may improve even more after Dr. Bradley closes her fenestration in the cath lab in about a year.)  So when MC has a seizure, because of her special heart, her O2 levels plummet, which is why she turns so blue/pale.   It is strictly from her labored/unstable breathing during a seizure.  For this reason, we’ll give her oxygen during a seizure.  No biggie, just a precaution!  Never hurts to have oxygen around for a heart kiddo, anyway!

Right now, as I sit at my computer desk, I have all of our doors open.  I feel a great Spring breeze and hear a neighbor cutting grass.  Mary Clare is dozing on my bed and McCanless is with Mimi.  Mimi was her substitute teacher today, much to her excitement.  I’m sure they are enjoying an after school ice cream cone or treat.

I’m sure I’ll soon get back into the habit of rolling my eyes at laundry, yard work, or all of my daily tasks and errands soon.  But right now at this moment, everything is just as it should be.  My washer has not stopped since we returned from Charleston, our yard was hit by a horrendous hail storm the day before we returned, and I have not been to the grocery store yet.  Everything is perfect.  We are all home and healthy.

Summer is just around the corner and the girls are getting excited about picnics by the pool, frequent beach trips and of course, our promised trip to Disney World.  Life could not get any better.

Life.

Slowly

getting

back

to

“normal.”

And

finding

a

new

“normal.”

Fontan Day 16:

We made it home!

Even our yard gave MC a Pinkalicious welcome!

Fontan Day 15:

1:25 PM After our eventful morning yesterday, we felt confident that we would meet with neurology today, possibly have another 24 hour EEG on Mary Clare, get an official game plan together for her seizures and be on our way.  In fact, we had already begun her “sprinkle” seizure medication routine last night.  Depakote, her seizure medicine, comes in a pill.  I open the pill and use the sprinkles on ice cream, icing, chocolate syrup, anything really, twice a day.   We were to begin a low dose morning and night for two weeks, review,  and continue to up her dose every two weeks until her appropriate therapeutic dose was given regularly.

After a long night of feeling Mary Clare toss and turn, I finally asked the nurse to give her oxycodone for pain.  The seizure yesterday seemed to have her chest and back very sore.  She woke up rather early around 7:30 AM, which is unusual for her and was very talkative and in a great mood.  I was chatting with her nurse and MC got down off of her bed to come sit in my lap.  I heard her make a “Uh” with a tick.  (Something I’ve been noticing and noting for about two months now.)  I mentioned it to her nurse, just to verify that she saw it as well, and immediately Mary Clare began to seize again.  My heart dropped, but I slowly carried her stiff and jerking body back to her bed and watched her writhe, gasp and turn blue once again.

I have seen her have grand mal seizures four times now. I wouldn’t say that I’m getting used to seeing her tiny body have a seizure, but I react very differently from the very first time she had one.  I know when she is seizing and although my mind is screaming and panicking, my body does exactly what needs to be done.  As I sit and watch what no mother should ever see, I know I’m being held.  Watching her have a seizure is heinous, to be honest.  There is absolutely nothing you can do other than watch and keep her safe.  I just hold her head and talk to her.  I don’t know if she hears me.  Probably not, but just in case, I want her to know I’m there with her.  When all is said and done and the eternal two minutes or so is over, I look back and know that there is no way I could do this alone.  Just as I am there with her, He is there with us.  Mel and I both certainly have a peace throughout it all  that even astonishes us.

We met at length with her cardiology team and Dr. Turner, our neurologist, and his team.  We feel confident that they have the best “game plan” in place.  (We just had to jump start it because she had two seizures within 24 hours.) Her emergency plan will be adjusted because of her special heart, but we will continue on with her original med plan.  Mary Clare is being given her full dose of Depakote through IV now and we will continue with her daily dose “sprinkles” twice a day.  We have been assured that her heart can handle this and from her heart’s point of view, all is well.  How amazing.

Fontan Day 14:

5:07 PM This post was intended to be a photo of the three of us on our front porch.  We were discharged this morning and were looking forward to surprising McCanless at home this evening.  We got the clear from cardiology after chest tubes were pulled and her echo was clear.  We had a follow up cardio clinic appointment set for Tuesday, discharge instructions and the car packed and ready to go.  We took photos with our nurses and hit the road around 11 AM.  It felt so nice to be in the car with Mary Clare and heading home.  The sun was shining beautifully, so we decided to celebrate and enjoy brunch outside at one of our local favorites, Fleet Landing.

The warm breeze blew her blonde ponytails and she watched dolphins dance in the ocean.  She crawled up into my lap to take a rest, I thought.  Moments later, Mel noticed her seizing.  The events that happened next were no short of a nightmare for both of us.  She stiffened and seemed to be in pain, which made Mel think it was her heart.  We realized quickly it was a seizure and within minutes, a nurse, a doctor and paramedic who all just happened to be at Fleet Landing from separate parties were at her side, checking her pulse and her chest for breaths and calling 911.  Her convulsions stopped  after about 2 minutes and she lay on her side while bystanders crowded.  She wasn’t breathing and grew pale white with silver blue lips.  Time stood still.  I just knew she was gone.

Mel was already on the phone with our cardiologist and we were told to go straight back up to 8D.  We refused the ambulance so we could skip the ER.  We left Fleet Landing after she slowly gained consciousness.  In the ambulance leads had been placed, O2 and blood sugar checked.  She was stable enough for the drive back to MUSC.  It’s funny how your brain continues to work even when all you want to do is concentrate on one thing.  As I held her in my arms in the back of our car, I noticed everyone on the street.  Most were tourists enjoying the warm, sunny day in beautiful Charleston. I couldn’t help but notice their colorful clothing, big sun hats and cameras.  I imagined they were shopping and chatting about the  rich history of the city.  Couldn’t they see that I was devastated?  Couldn’t they tell that Mel was driving like a mad man to get our baby back to the safest place for her?  Everything was in slow motion.

We are back in our room now, Mary Clare is sleeping (which is typical after a seizure) and we’ve already talked to two neurologists on-call , her surgeon, Dr. Bradley, and one of her cardiologists. Depakote, a daily medication to prevent her seizures is a must at this point.  It will be a slow process to get her dosage/amounts adjusted for her, but we’ll begin tonight with her first dose at 9:00 PM.  At least we have a plan for now.  Soon she will wake up and not remember any of this.  She may wonder why we are back at MUSC.

Her medical team strongly feels that her seizures have nothing to do with her heart.  She has Hypoplastic Left Heart Syndrome.  She has Epilepsy.  Her heart is fine.  (It’s just half sized.)  Her brain is fine.  (It just likes to have seizures.) She’s on daily asprin and meds for her little heart, and now she will be on daily meds for her little brain.  God just decided to give me a wonderfully complicated, high maintenance baby girl.  (Good thing He gave me Mel to learn how to deal.)

Fontan Day 13:

2:30  PM It’s a lazy Saturday on 8D. It’s always slow on the weekends at MUSC.  The hustle and bustle of students, visitors and medical staff slows way down. Starbucks even closes.  Mary Clare has had a great morning.  We visited the Atrium, had a yummy chicken noodle soup lunch and are now watching Tinkerbell on the Ipad.  Mel is downtown with a friend and it’s quiet, exactly what I was hoping for this Saturday.  We may take a nap and head outside later on today.  I’m thrilled to say there isn’t much new to report!

Finding music

in unusual places

like chicken noodle soup bowls, juice glasses and sippy cups.

8:00   PM Mary Clare and Mel are relaxing in the bed watching Tinkerbell for the third time today.  We’ve had such a nice day.  Mary Clare has even had fun playing dress-up with her new Tinkerbell costume that Daddy bought her downtown today.  Mel talked to McCanless this afternoon and she is certainly having a big weekend.  She spent the night with “Nonnie” and “Bubba” and Kate last night.  They went out to dinner and to see the movie, Soul Surfer.  Today, Mimi took her to Columbia to spend the night with Aunt Liz and Uncle Robert.  I just received two photos from them.  One photo was of McCanless riding with the top down of convertible and another was a photo of her first pair of shoes from Coplon’s.  Yikes.  I miss her terribly, but I know she’s in great hands and having a ball!

Notice anything?

Life on 8D

Artwork by Mary Clare, signs from our fun nurses who don’t allow boys, and other signs from nurses who know Daddy too well!

Dirty hands and fingernails from painting.

Prizes and treats everyday for taking meds!

Beautiful princess nurses who love to play!

Late night rides in strollers waiting for chest x-rays.

Fontan Day 12:

1:47 PM Mary Clare’s fluid levels from both chest tubes have been decreasing every single day.  Our cardiologist told us to expect a spike, trying not to get us too terribly excited and hopeful, but so far, little miss has proven him wrong!  She had a chest x-ray this morning and a visit to the Atrium and after a cheese pizza lunch is now soundly sleeping in her new Ariel PJ’s from Ms. Rebecca.  I’m sitting in our room with the constant bubbling sound escaping from her fluid collection chambers and Mel’s on his phone talking “city” stuff.  It’s a relaxing day.  We ordered take-out from a great sandwich shop downtown, Bubba Slyes Deli, and treated a few of our amazing nurses.  Later, we’ll head back to the Atrium, I’m sure and continue with our low-key day.

5:45 PM Guess what’s missing…

One chest tube, pacing wires and a central IV!

7:00 PM While I’m thrilled that my baby girl is one step closer to home, my heart aches at the thought of what she went through today to make that happen.  She is the strongest little fighter I know.  I’ve always been with her through every medical procedure that I’ve been able to attend.  Even when I’ve been asked to step aside, I always let them know that I can handle it and I always stay.  I’ve explained to Mel that if she has to endure it, I feel the very least I can do is be there with her.  Mary Clare likes to know what’s going on.  I try to explain beforehand what’s going to happen and how.  She’s a smart little one and you can’t fool her, so I’ve always stayed.

Today, I was told that she would do much better without me there.  Ultimately, it was my call, but I wanted to do what was best for her so let her go without me for the first time. MC went with her nurses and met the team that would remove her central IV line in her neck, her pacing wires and one chest tube.  She was given Morphine and the procedure began in the Procedure Room down the hall on our unit.  As soon as the door shut, I wished I was there with her.  I felt like I was being a coward.  I hated it.  As I sat in our “No Boys Allowed” room with Mel in silence, listening to our baby girl scream, so many thoughts raced through my mind.  Why am I allowing her endure all of this?  Why should a three-year-old know this kind of pain?  And if I’m being totally honest, did we really make the right decision to have the three staged surgeries?  It was our decision to take the risk and our decision to put her through this.  I was angry at myself that it was her on the table at that moment and not me.  If I could exchange hearts with her, I would do it in a moment, without a doubt.

And the inevitable question, what’s in her future?

I try not to go there.  I try to appreciate every single moment that we have, but I’m a mother.  Every mother dreams of her daughter’s first date, magical wedding day and seeing her become a mother.  Dare I wish for these moments for her?

It’s at times like these that I have to stop and be thankful for the moments we have shared.  We have  so many magical memories already and for that I am forever grateful. I can only hope and pray that she doesn’t remember all of this, one small window in her third year of life.  None of us are promised tomorrow, so yes, I will wish sparkly pink prom dresses and a beautiful wedding gown and babies for her.  I will laugh at her eye rolls and pappi obsession and love of all things Pinkalicious right now.  I will embrace her special half heart and thank God that he blessed me with such a miracle.  I will thank God for today.

Fontan Day 11: Pink, I said. Pink! Pink! Pink!

2:00 We have quite a busy girl these days!  She’s napping from a great morning of costume changes, lunch outside and lots of Pinkalicious surprises!  Mel came back into town last night after a couple of days “catching up” at home.  He visited with McCanless one last time on his way out of town and we all “Face Talked” on our phones.  (We could see each other via my iPhone and Mel’s Iphone)  It was so great to see her and let her see that her baby sister is doing so well.  Mary Clare’s chest tubes are draining quite nicely and her trend continues to be on a steady downward slope!  Yay!  Her cardiologist is convinced that we’ll have one more day of an increase in fluids, but so far, she’s proving him wrong!!  She gets stronger everyday and seems to be feeling much better.  Last night, we visited the Atrium and she painted her hands and arms blue.  I’m beginning to see more and more of my “old” MC shining through!

We had several visitors yesterday.  Ms. Reagan brought pink cupcakes, pink icing and pink sprinkles and we had a cupcake decorating party.  Sprinkles were everywhere.  Aunt Kacy, Aunt Liz and Uncle Robert entertained us too!  Normalcy is setting in, finally!  Unfortunately, exhaustion is too.

Mel brought with him a car full of pink goodies and pink treats from friends and family, including a Pinkalicious cake!

Sylvia’s Cakes in Lancaster sent MC a Perfectly Pink Pinkalicious cake and cupcakes!  So yummy!

Lunch at Halo across from the hospital.  Collection chamber boxes are in the back of the stroller.

Watching “Annie” on the Ipad.  Thanks Aunt Liz and Uncle RahRah!

Tuckered out in her beautiful “Annabelle Bow” after our morning out!

We were finally able to wash MC’s hair tonight!  (She’s had sticky EEG hair for almost a week now.)  I held her back in her bed and he used cups of water over a basin.  It was tough trying to support her without hurting her back or chest or get tangled up in all of her wires, lines, tubes, and big fluid boxes, but we did it!  She thoroughly enjoyed it and closed her eyes as we scrubbed it and poured warm water over her blonde locks.

Happy 1 week Fonanniversary, MC!

6:00 AM One week ago today at this moment, I was handing over MC to her team of docs.  It’s amazing how far she has come and what she can do one week post op.  We had a fun afternoon yesterday with a visits from Aunt Kacy and a few friends.  Yesterday was the first day MC has been around another child and I think it was great for her.   I’m anxious to get McCanless here to visit her baby sister.  I know they will both love to see each other.

MC started off her day pretty slowly.  She was in no mood to talk to her cardiology team or Dr. Bradley, her surgeon.  She slept in and lounged around most of the morning and didn’t even want to head to the Atrium for a morning visit like we usually do.  We took a walk around the hospital and watched Nemo for a bit.  After lunch, I made her get up and we went to the Atrium.  She painted and played for a while once we were there.  Later on, her nurse changed the bandages on her chest, which was not fun, but she had a  great afternoon playing with Parker, my friend, Lee’s 7-year-0ld.  They laughed and giggled and he even painted her toenails.  It was amazing to see how happy she was just being around another child.

Her nurse came in this morning and checked her 24 hour fluid output from her chest tubes.  Her output is still somewhat high.  Her left tube output was 115 mls and her right tube output was 150 mls.  We’ll get there.

She continues to be a bear with taking her oral meds.  She’s just sick of them.  I can’t blame her, though.  She still doesn’t have much of an appetite, although she did chow down on a handful of Coco Puffs yesterday.  I’m hoping today she will want to eat more, get her meds down (and keep them down) and have enough energy to make it to the playroom.  Yesterday, a new neighbor arrived, a HLHS baby girl.  It was great talking to her family and being able to show them how great MC is doing.  As I talked to her mom about feeds, tummy issues and sleeping habits, the memories of her very first surgery came flooding back.  It seemed like an eternity away until I really started talking about it.  It still amazes me how much my baby girl has been through.  No wonder she’s so sassy!

Parker painting MC’s toenails yesterday!

7:33 AM The Princess is still sleeping soundly and I’ve enjoyed watching the sun rise on the Atrium.  It’s truly a lovely view, especially for my sweet girl who lives to visit the magical playroom everyday.  I snapped a few photos and thought I’d share.  On 8D, parents are required to stay with the children as primary care givers.  (Not that I would be anywhere else anyway.)  We do have a fold out chair that acts as a twin bed at night; however, I opt to sleep right in the bed with Mary Clare.  She loves to “get in her spot” smushed right beside me.

Do you see sleeping beauty all bundled up?

10:30 AM Mary Clare just downed 5 meds so I’m letting her take a break with a bit of “Max and Ruby” on Nick.  (I’m also giving myself a mental break after that ordeal.) Otherwise, she’s had a slow start today.  Our plan was to hit the Atrium at 10, when it first opens, but the docs have not rounded yet, so we’re waiting on them.  It’s amazing how full our days actually are.  We are never just sitting around.  We have appointments, and meetings with various docs, nurses schedule various events (dressing changes/IV meds/ check-ins) and we always have Mary Clare “events.”  I should have known that Mary Clare would wait to be plugged into an IV pole, with two chest tubes and collection chambers, and wireless telemetry leads to refuse to go potty in a pull up.  I’ve waited two years to really try to potty train her because I just knew it would be an ordeal to be in panties while in the hospital. Or in the least, I thought she would revert BACK to pull-ups-so I waited.  This week, though she is as potty trained as it gets, even through the night.  Dry as a bone.  My children are as hard headed and head strong as they come.  Shall we take a moment to pray for my patience?

Have I mentioned how blown away by all of the love and support we have received?  I have been amazed at the number of people who love our baby girl and pray for her everyday. I just read an eNewsletter from Thomas Hart and saw that the student body has raised $1,351.00 so far for the American Heart Association in honor of MC.  They have been selling buttons with her photo and “Pinkalicious” on them, of course!  So amazing.  I also have hundreds of photos of MC fans wearing pink overfilling my inbox.  We have seen photos of friends, students, co-workers, strangers, store owners, pets, people from the East coast to the West coast all donning their pink for MC.  We have photos of pink balloons, pink ribbons and pink decorations from everywhere on store fronts and houses!  My heart also overfills with happiness and gratitude. I can’t wait to show her the photos  one day and  tell her of the Day of Pink that was just for her!   Pinkalicious author, Victoria Kann, also contacted us and sent Mary Clare a Pinkalicious care package with Pinkalicious dolls and signed books.  How amazing is that?  We are blessed beyond measure.  Thanks be to God!

Fontan Day 9: Post Op Day 6

7: 50 AM Little Miss is sleeping soundly, so I thought I’d take a moment to update.  (It’s getting harder now that she is mostly awake during the day.)  Yesterday, we had an amazing day!  We really enjoyed getting out in the sun and playing in the Atrium, but I think it may have been tough on Mary Clare.  She certainly wanted to get up and go. Her mind is so ready to tackle the world, but her little body just can’t handle it all yet.  She still doesn’t have much of an appetite and has been vomiting.  (Usually after she takes her meds.)  She’s so funny and  always wants to be in a shirt and a top.  She insisted on dressing in “real clothes and shoes” yesterday for our outing.

She also stood up and walked a bit at the train table in the Atrium and we even got her in the tub yesterday afternoon.  (Finally going to the potty thanks to an enema-which resulted in a tub bath.)  It was a quite an event getting her to and from the tub.  Mel had left about an hour prior, so it was just me and her nurse wheeling her IV pole, tube boxes, and lines and inching our way to the bathroom with a naked MC.  She was so happy to be taking a bath, but demanded her Barbie with the swim suit!  She sat for a few minutes and played with her Barbie as her nurse and I hovered over her with her gear.  I got her all cleaned up and she crashed within about 2 minutes of being in her clean bed and clean jammies around 6:30 PM.  She woke up at 11PM and we sat in bed munching on ice and watching late night television and Face Talked with Daddy on the Iphone.

Her nurse had to change the dressing on her central line in her neck yesterday, which is surgically sutured.  (Quite an experience.)   And when she finished, Mary Clare looked up at me in all of her bandages and lines and said, “But Mommy, I’m not beautiful like this.”

I had to explain that all of the scars on her tiny body were beautiful examples of all that she has accomplished.

I finally spoke to my 7-year-old teenager yesterday.  She finally decided she wanted to take time to talk to her mom.  Mel went home yesterday to check on the house, work a bit and go to his council meeting tonight, so he surprised McCanless after school!  They went on a date to Bow Thai and called me from there.  She already sounds so much older.   Mimi is keeping her involved in all of her after school activities and keeping her busy!  Of course everyone at home is keeping close eyes on her, spoiling her, I’m sure.  She has always amazed me with her maturity.  I’m so thankful she understands and realizes why I have to be away from her right now.  I thank God everyday for my many blessings.

Fontan Day 8: Post Op Day 5

2:00 Mary Clare is resting right now and Mel just left to go home for a few days, so I’m updating early today.  We’ve had a great day so far.  We were encouraged to get Mary Clare up and moving.  It helps get the fluid out of her chest and into her two bubbling boxes that go with her everywhere. All of the fluid coming off of her chest is closely monitored.  One box for her right tube and one box for her left tube.  Her fluid output increased yesterday and it still up today, but that’s to be expected.  Her numbers should go up and down, we just hope the trend is on a downward slope for the most part.  We’ll get there.  It is a gorgeous day in Charleston and very warm. It was great to get out of the hospital and enjoy the sun.  It’s amazing how uplifting a stroll in the “real world” can be.  We even sat outside at a little cafe on the MUSC campus and had a quick lunch.  Mary Clare sat in her wagon in the sunlight with her wireless monitor and boxes.

Mary Clare still has pretty bad back pain, but really only complains of it when we have to move her.  She looks like a little old lady when I have to pick her up.  She keeps her back stiff and holds on to my neck.  It’s quite an ordeal to get anywhere, even across the room, but it’s necessary and certainly worth it.  She still refuses to go to the potty, but we are working on ways to help get that under control.  We had a meeting with her neuro team today and had a few questions answered regarding her epilepsy.  They feel she has a genetic predisposition to have seizures, which means she would have had them with our without the heart condition.  They know this because her seizures are generalized; her whole brain is involved, not just one area of the brain.   Her neuro team will is watching her closely and will probably do another EEG before we leave.  Mel and I feel that if her seizures are as few and far between as they have been at home we’ll continue to just monitor her and not go forward with the anti-seizure meds. We love her nuero docs, who aren’t pushing the meds, so we feel good about this decision.  It is our understanding that the combination of the stress/trauma her little body has just gone through plus her predisposition to have seizures just raised her threshold to have seizures, which caused the increase in seizure-type activity.   (Much like a Febrile seizure, when a child has fever.)  We know she is prone to seizures, we just have to know how to react when she has one and just realize that sometimes she may be more likely to have them than other times.

She loves the underwater sea theme of the hospital.  One of her favorite things to do is go to the first floor and see the saltwater aquarium.  We’ve found Nemo and Dory in a tank with the Easter bunny!  She can sit and watch the tank forever.  Right now, we are in our room watching Finding Nemo and taking a rest from our outside time and hospital stroll.  The Children’s Atrium opened at 2:00, so we’ll soon head down there for another try today.  As always, we have met amazing families and babies who are defying the odds and are fighting with everything they have to survive.  It is truly humbling to see.  We live such an amazing life and have an amazing little girl. We are so fortunate to have so many friends and family caring for us and praying for her everyday.  God has certainly blessed us in so very many ways.

Fontan Day 7

7:30 PM Another day down.

Mary Clare had a very tough day yesterday.  She refused to take her oral pain meds, and wasn’t on IV pain medication.  She hasn’t complained at all of her chest, as I assumed. She has been having severe back pain.  We’ve ruled out several ideas, but have really not determined the exact reason.  We spoke to a surgeon on her team and he seemed to think it had to do with “entry of the chest cavity.”  Basically, how her little rib cage was ripped apart and bruised.  So she has been given Toradol, which should help if it’s muscle pain. Last night, she threw up every time her nurse tried to give her meds, so we’ve started her on meds for nausea.  Today has been better and it’s not as much of a struggle to get them down.  (She’s a stubborned little one!)   She has also learned that if she says she doesn’t hurt (even when she does), the nurses and doctors don’t touch her and she doesn’t have to take medicine, but we are getting there.  One baby step at a time.

Today, she has been awake more and has been happier.  We tried to play in the Atrium, the children’s play center.  We unplugged her, piled her into her transport wagon and wheeled her down stuffed with blankets, pillows and all of her necessary gear.  She was so excited but just couldn’t muster up enough energy to do much of anything.  She wanted to play so badly, but it was simply too painful to maneuver her little body.  We painted and walked around and stared up at the colorful kites and basked in the sunlight of the Atrium windows.  After about 20 minutes, she was frustrated and in tears, so we headed back up.  She wanted to sit quietly in her wagon for a while once we were back in our room.  The quiet, and stillness seemed to calm her.  It saddens me when I see her sitting quietly like that, just staring at the wall or into space.  She seems to know that her body needs time to heal.  She understands all of this somehow.

She also ate for the first time tonight.  Cheese pizza!  She just hasn’t had an appetite at all.  Not even the bag full of pink candy from Uncle Robert enticed her.  As I type this, she is watching Tangled for the second time today and I’m hoping and praying that she will go to the potty.  If not, at 8PM, they have to catheterize her.  Although we seem to be having a few bumps in the road, she has amazed me with her determination and stamina.  She is such an amazing little girl.

10:00 PM So, Mary Clare and Mel are in bed watching Tangled for the third time today and guess what?  MC went to the potty.  (She decided to go just as the nurse was walking down the hall with her catheterization “tools” ready to get started.  Nurse Kyra smiled when she heard the news and gladly returned them. We all cheered and “high fived” Ariel. Definitely a great ending to our day!  Mary Clare has also been taking her oral meds like a champ.  (Well not quite like a champ, but we’re getting them-and keeping them-down-so that means she’s a champ in our book.) Goals for  MC tomorrow:  taking another trip to the Atrium (actually nurses orders-the movement helps keep the fluid moving), talking all oral meds, going to the potty and eating a little more.  Baby steps.  I’ll probably need help remembering baby steps when we try to get our three-year-old back to “normal” when we get home.  I have a feeling it may take baby steps to reverse the effects of all of this attention “Ariel” is receiving, but she deserves every single bit of it!

Fontan Day 6: PCICU to 8D

Fontan Day 5: PCICU Friday

Noon: A case is “rolling” so I”m updating. MC is sleeping now, and I just watched a family pray and thank God for Dr. Bradley’s healing hands on their own child, a 12-month-old baby boy with an AV Septal defect. Amazing.

Last night, I went back to our room about 11 p.m. and slept. I just knew that I would wake up and go back sooner than I did, but I didn’t move until my phone alarm went off at 6 a.m. I showered and headed back to PCICU to relieve Mel around 7 a.m. He stayed with her all night. We both just didn’t want her to wake up and not understand where she was or not know where we were. Thankfully, she has not really been aware of what’s going on much. She is in and out and very groggy. She was in so much pain last night, but would not take her meds. She did not want anything to do with taking them orally, so the only relief she has been receiving is through her Morphine IV, occasionally. The problem with that, is she is itching terribly. She has been given Benadryl for the itch, but I’m just praying that she will soon trust us enough to take her Oxycodone and Tylenol! (Oral pain medicine.) They are pulling her central chest drain tube, and IV to her heart now and will remove a few lines. She is draining a ton through her three tubes now. We may be able to go to the PC Step Down unit, 8D today, which is earlier than I expected. She will keep the line in her neck and arm and her two chest drain tubes. She is in a private “area” glass room in PCICU now, but we can’t actually stay with her. Once we move up to 8D, we will both be able to stay with her.

I’m very concerned with her seizure activity. Yesterday, she was having occasional, quick loud breaths./shout outs. I’ve noticed she’s had them for a while, even before surgery, but they were very few and far between. Maybe a few times a week. Usually at bedtime, just before she fell asleep. She had about 10-15 yesterday with an occasional “stare” episode. Last night, I read Pinkalicious to her and she had what I know was a seizure. She had the most bizarre facial expressions, ones that I have learned only happen with one of her seizures. She was unresponsive for a minute or so, then returned her interest to her book. Today, they are more pronounced and are happening pretty often. The “shout outs/yells” are longer and her blank stares are longer. Thankfully, Dr. Turner has ordered an EEG to read her little brain waves and get to the bottom of it all. I’m pretty sure that there isn’t much that can be done, I’ll just be glad to get him, the expert, involved.

It has been a difficult day for me. As a mom, I want her to respond to me and I want to be able to comfort her. Right now, for the brief moments she is awake, she is very angry. It almost makes me happy to see her feisty little spirit, even diluted and momentary, but my heart breaks because I can’t fix everything. She woke up for a moment earlier and looked up at her beautiful young nurse with a long blonde ponytail and smiled. When the nurse talked to her in her sweet voice, Mary Clare asked her if she was Cinderella. I’m hoping and praying to God that she is dreaming of beautiful princesses and magical fairy tales and will remember this as a quick visit to see her Cinderella nurse.

4:15 Another “case rolling”…Great news to report!  Dr. Turner came down with a team from Neurology.  He is amazing!  After talking to us about her seizureish activity, they ordered a 24 hour EEG.  If she shows enough patterns/activity to determine exactly what’s going on, it may not have to be that long.  Unfortunately, we have to remain in PCICU until the EEG is complete.  (Which means moving to the step down unit, 8D, is postponed a bit.)  I’m completely fine with that, as long as we are getting down to the bottom of these seizures.  Dr. Turner seems to think they may be myoclonic seizures.  We’ll see.

Around 12:30, they gave her IV morphine and Versed  to to keep her quiet while Dr. Bradley removed her central tube and IV.  She also had one IV removed in her little hand.  That leaves one on the opposite side of that same hand, one in her neck, two drain tubes and pacing wires, telemetry leads, pulse ox and oxygen.  We’re getting there!  She is in much better spirits this afternoon and even watched Happy Feet.  Her chest pain seems to have lessened.  She has even rolled on her side a few times to change positions and get comfy.  Right now they are placing her EEG lines in her hair and we were told they were more “permanent” this time.  (Last time sticky gel was used to keep them in place for an hour or so.)  I’m hoping Ariel will have hair left after this.  Actually, it may work out well.  We’ll just have to buy a red wig.