Heart of the Matter

Update on the lil' Mags heart condition.

Maggie has finally broke the 40 lbs mark! That's right I'm excited about my child gaining weight... this is excellent for a variety of reasons. One being that the procedure which would go through the blood vein through her leg is an option versus opening her chest up.

Pro's of Leg Procedure:

Small scar - on her upper thigh, no one will ever see it!

only a couple stitches - compared to many more on her chest :(

less pain - morphine still required absolutely and will be completely sedated.

It looks like they can schedule the procedure to occur in June which is perfect with my school schedule and hopefully by then she will have gained another pound. One can hope right?!?

My Baby Girl

Today I took my baby girl to the Children's Heart Clinic of Minnesota, which I will go into more detail in my next post. But this post is all about my love of photo apps and my favorite subject - Maggie.

Maggie wasn't too excited about her doctor's appointment...

Waiting for her heart echo...

The blood pressure cuff has to be her least favorite...

Post echo. On the positive side in her room they have ESPN on the TV to watch. Negative - strange computers and jelly on chest with probe poking chest and ribs that she did not care for.

Post traumatic experience in need of Mum

My beautiful baby girl

I love you! I'm sorry that you have to be poked, probed, sedated, monitored, asked a million questions and have to meet new doctors, nurses, receptionists constantly. But I know you will be healthier, stronger, smarter because of all these experiences.

Ever yours

Ever Mine

Ever Ours

Heart, Teeth & Blood Work oh My!

The day finally came and went but it was a LONG day.

We arrived at the hospital (Maggie and I had not eaten in 12 hours or had any liquids) at 9 am and I though she would be under by 10 and out of surgery by 12.

Was I wrong!

She wasn't even put under until after 12, that's 3 hours we had to kill in a boring hospital room that, thank God, had a TV with PBS so she watched clifford and arthur. Then after getting bored with that I pulled out the iPad and she watched espn football for an hour.

The nurses were amazing and We are fortunate to have a fantastic children's hospital! However It was a long day... by 2 she was finally in surgery and I had to have something to drink so I found the cafeteria and of course it was closed. Awesome. But the guy cleaning took pity on me and he gave me a bottle of diet coke :) I went back to out room thinking it would take 1 -2 hours... more like 4 :( Only positive I could think of was that the TV had travel channel so I watched 4 episodes of No Reservations.
Waking up his time was much harder than previous experiences. She did not take to the multiple rounds of anesthesia well, on top of morphine and empty stomach it was not good.
Yes, she LOVES her vikings! Good news is were moving along with her Heart doctor, teeth are clean and she only had a couple cavities (which for as difficult it is cleaning her teeth, is fantastic!)

Pre-Op

Nurse: Magdalaina?

Me: Maggie, It's your turn. Let's go

Nurse: How are you today? (looking at maggie...)

Me: She's good but she doesn't care for doctors or nurses for that matter

Nurse: Ok, Can you stand on the scale? I need to get your weight

Maggie: (refusing to stand on scale without death grip on me...)

Myk: (tiny bruises and broken blood vessels become visible)

GOOD JOB!!! (after she finally holds still for 2 seconds)

Nurse: Can you stand nice and tall?

Maggie: (thinking to herself - I don't think so scooter!)

Nurse: Do you wanna try and get blood pressure? Or maybe will skip that...

Myk: ( thinking to myself - She learns quick!)

Nurse: Ok, Well Maggie your in the 46th percentile for height and 2nd percentile for weight...

Myk: (deep breath, I knew this but it's still hard hearing every time)

Nurse: Well Dr. Hoffman will be in with you shortly

Myk: Thank you

Dr: Hello! Are we exciting how cleaning teeth and looking at your heart?

Myk: I'm containing my excitement

Dr: Wonderful! paperwork and everything is ready for monday. No fluids and solid foods after 3am and clear liquids up till 9am. You've been through this before... I would recommend you bring some comfort items like a favorite stuffed animal. Does she have one?

Myk: Um... Yeah but he's as big as I am. How do I explain to security and the nursing team this enormous bear?

Dr: They won't mind! We can arrange for double room

Myk: LOL

Dr: Well think about what will make her comfortable...

Last time the nurse gave her apple juice and I stroked her hair as she woke up and she just looked cold and out of it! She was so unhappy! I was able to get her mostly dressed in pajamas and load her into the car, I took her home and she slept for hours. It's hard watching a child, especially yours go under - it's so fast one second she is crying and scarred the next lifeless looking. And then the doctors rush you out so they can work but I always look in just to see her. And then I have to pretend to keep myself busy as I don't panic or worry - yeah RIGHT!?! I'm always nervous and anxious each time. It's one of those things that does not get easier with repitition.

I tell myself, "they know what they are doing, your child is in excellent hands, this is necessary and for her benefit, just take a deep breath and relax myk"

I hope most parents never have to go through this procedures like I have, like Maggie has!

Geneticist

Phone rings... Hello?

Good morning this is Dr. Mendelsohn's nurse and I am calling to inform you that their is now a simple blood test to determine conclusively that your child has Kabuki syndrome.

Okay... I guess then it is a good morning...

We will schedule an appointment, and we look forward to seeing you!

Well this was the conversation a few weeks ago and then this past week I pulled Maggie from ABA and we headed to Children's hospital to see her wonderful geneticist.

Why do I like this doctor so much? So glad your curious...

• I like that going with seeing us after a year or even 2 she remembers details about Maggie, and even myself.
• I like that she doesn't talk down to me or explain it to me with the assumption I'm an idiot - yes I have had several specialists do that
• I like that she is positive, in the sense that she understands the daily issues but focuses on the milestones and developments that have occurred!
• I like that she has a sense of humor, not all doctors do.
• I like that she gives me practical suggestions and not just a brochure or website to go to.

Overall it was a positive appointment. We were able to combine blood work with her upcoming dental work and heart echo (which are under anesthesia) - The one thing that was brought up and no surprise to me, it's not like I don't try!

Her weight!

She is just a skinny mini, doesn't eat a lot, can be picky, limited diet, very active and burns off everything she consumes... BUT we talked about healthy but fatty foods to add her diet. Most kids I know, parents have to start sneaking in vegetables or fruit and at a certain age start to control their intake so they are a healthy weight. But not my kiddo!

She is just too much of a supermodel - She needs to put some meat on her bones :)

Smile

Like every sane individual I do not enjoy going to the dentist. My dentist is nice and always thoughtful about pain and is willing to numb or give me the good pills before starting! But her gloves smell like cherry, that odd cough syrup smell. There are covers on the light that made them look like a cloudy sky. The TV is a nice bonus if for nothing more than an audio distraction from the drill or metal picks poking on my teeth, like nails on a chalk board. This morning I went in and they could only work on half my mouth today, which when finished made me look and sound like I'd had a stroke on the left side of my face. But I survived and get to relive the charms of the dentists office next week - because honestly it's really odd having half my mouth sparkly clean teeth and sore bloody gums(eventually will heal) while the other half is easily 5 shades darker and the gums are pink.... I'll just keep my mouth shut... And Floss more...

The real excitement will begin this summer when this beautiful smile gets to undergo her first formal cleaning. Yeah... I took her for the first time in January and they did a basic look over while I held her. The actual exam part was about 5 minutes of the dentist looking for cavities and any other noticeable issues that required immediate attention. I held her while she leaned back on the dentists lap - It was 5 minutes of pure screaming! Joy, just lovely joy. So you can imagine I'm looking forward to this summer's full cleaning. NOT - she gets to be put under because well she won't go willingly. This is a moment I get to look at my baby girl and say don't worry. Everything will be ok. I will see you soon. I love you. Your going to have an even more amazing smile when I see you soon! Go Sleep Sleep. And then as soon as she's out - I get to pray and hope I was being entirely honest with her. Why does everything have to be complicated?!?

Neurologist

After visiting with the Pediatrician for Maggie's 5yr check-up she referred us to a Neurologist.

Maggie was seen by the (Brain) Noran Clinic when she was 2 for what seemed like mild seizures. She went through a battery of tests 2 hour EEG's and eventually a 48 hour EEG's it was a series of appointments and nurses and blood work and machines and driving downtown, and validating parking, & bad hospital food - However it was worth all of it to eventually lead us to her diagnosis. But that small part of me thinks

I've already done this! Maggie has had been through so much can't she be done?

I'm worried and stressed - unmotivated in other areas of life - that this is the beginning. Again.

A few weeks ago Maggie sustained burns on her legs while pushing herself against our electric fireplace...

NO REACTION

No crying, no pulling away from the source of pain, if any pain I suppose

I've seen minor injuries that she has had no reaction too and I assumed she had a high pain tolerance.

I just hope this is a minor incident - that it's not the start of another search for another diagnosis.

but yet again I am changing my schedule to fit in another doctors appointment - trying to stay positive.

Maggie - Cardio Appointment

Maggie had an UGI with Radiology on Monday and the only result I have received is that Mags has some acid reflux but to the extent and the treatment I don't know yet.

We are meeting with a Pediatric Cardiologist on thursday to discuss what is the next step in a seemingly endless road of appointments.

Sorry I don't have any good news or cute pictures - It's just been one minor bad thing after major bad event after annoying/negative little details . . . uuuggghhhhhhh

So anyways just keep Maggie in thought and prayer - Thank You

Maggie's Heart

To make a long story short - Maggie has two holes in her heart which require surgery to repair - I do not have any more details at the moment. But I will absolutely let everyone know as soon as I do!

I truly appreciate all the generous thoughts and prayers family and friends have forwarded to Maggie

I know she is in good hands with Children's Hospital of Minneapolis

long week...

Maggie always makes for a cute blog!

It's been a long week so far for me. I've been going to So many doctor's appointments and therapy appointments and not feeling like we've getting anything other than really expensive doctor's bills - (only time I kinda wish I was Mrs. Cruise) I Love my kid so I want to do anything I can for her. The icing on the cake though was going to the metabolic geneticist where I was giving 3 options 2 of which don't explain everything the other is just a really depressing diagnosis. Hopefully in the next few days I will receive a phone call with a pleasant voice on the other end delightfully explaining that the blood work all came back normal and the urine tests did show elevated levels and some diet changes are necessary but overall we do not know what is wrong.  That's better then a really negative diagnosis.