3/9/17

Cardio appointment (3/8/2017)

Yesterday we drove to Missoula for a 12:30 appointment with Dr. Sticka. For the most part everything looks pretty much the same and maybe even a tiny bit better. Dr. Sticka is your usual cardiologist, so won't give you too much to get excited about (I swear they must teach them in heart school how to make sure and jump to worst case scenarios... Just in case the parents don't have a reason to stay up at night worrying).  I did tell him that I understood what complications could arise and that I didn't want to talk about them until they arise. Mostly I don't want him scaring Carla. When and if we get into a situation where we need to re-list her for a heart, we will be the ones to tell her, in the most optimistic way we can manage. Until then, we don't need to worry her, she needs to focus on being a kid as much as possible.

After the appointment we headed over to Jimmy Johns for a sandwich and then to Best Buy to look at some technology.  We ended up getting Carla a drawing pad (that she has been asking for for months). We told her it is an early birthday present :)  She was OVER THE MOON EXCITED!

She's about to burst with excitement!

:)

Isn't she adorbs :)

The roads on the way home were good, except for McDonald Pass... I was so thankful the Bobby was driving.

Yucky roads...
Today Bobby woke up with the stomach flu... so we are feeling really sorry for him as well as steering clear of him and his mung... Poor baby.  Carla says: Dad has the "Man Flu" ...  She's pretty cute. I pray to God that Carla and I don't contract the "man flu"

Well, that's about all I've got!  I hope this finds you happy and well!!!

Love, Jen


3/6/17

Update

Let's see, what's blog worthy...?

On Thursday, the 23rd, the school called and told me that Carla was feeling dizzy and looked pale. I went and got her, took her blood pressure (which was normal) and fed her some food. She had caught a cold and it was hard on her. She kept saying: "I hate my body, I have the worst immune system." She was sick for about a week and finally went back to school last Wednesday, the 1st. I caught the cold on Wednesday, the 1st,  and Bobby started feeling poopy on Thursday.  Mine was actually only super annoying for 2 days, mostly just a head cold with a super runny nose and itchy face. Bobby seems to be a lot sicker than I was, so hopefully it's not something different and we don't all get sick with what he has.

One of the interesting things I noticed about getting the call from the school on the 23rd... It totally threw me into a tail spin.  I had been tracking my calories, exercising and being really good. and feeling really good about myself.  After arriving home from picking up Carla, I just wanted to stuff my face with junk food. It made me feel very vulnerable and probably cued my self diagnosed PTSD. When I woke up the next day, my whole body just ached. It felt like someone had taken a bat to my back, shoulders, hip and neck. This is what living with chronic stress will do to a person. I try really hard not to let myself get carried away with what ifs and also try really hard not to let myself worry about things until they actually happen. But, every once in a while I feel like I'm losing it.  After a couple of days of what felt like an emotional tail spin, I am feeling more like myself again. Thank God!

Carla has a cardiologist appointment in Missoula on Wednesday (the 8th), so I am hoping for good news on that. It's always a little nerve wracking because you just don't know what they are going to see. It's also a little nerve wracking this time of the year because you never know what mother nature is going to throw you. I am not someone who will travel if the roads aren't safe.  So, hoping they stay alright.

I'll let everyone know how Wednesday goes!

Love,

Jen

Yesterday Carla felt like having S'mores.  I thought this was the best way to roast a marshmallow in the house :)

2/21/17

Checking in...

Hello there!  Time has been flying by and I don't necessarily have much to report.  But, I have seen a large improvement in Carla's coloring as well as her energy level.  Yesterday she wanted to walk to school, so we did. It took about 17 minutes (it's about 6 or 7 blocks), but she didn't have to completely stop to rest at all.  This was a huge improvement from when we tried walking to school in the past. School has been going pretty well for her except that she seems to get over stimulated pretty easily. She has always been super sensitive to sound and when her classmates get really loud she can't take it. She also hates pep assemblies for this same reason. This morning she is still sleeping because when I woke her up for school she said that she had a sore throat. I know there are a bunch of colds going around the school so, it's not unlikely that she doesn't feel well.  I guess we will see for sure later in the day.

Yesterday I rearranged and got rid of a bunch of clutter in Carla's room. She wants to have a place to put a desk, so rearranging was in order. She is getting to the age that she is not really playing with her toys. So she wanted to sell them, (she has a really cool Barbie Dream House as well as a Princess Castle and a ton of barbies, princesses and princes). I had all the dolls sold, but then she had a change of heart and didn't want to get rid of her toys. The lady who was going to buy them (online garage sale) was very gracious about the whole thing. Carla did, however, part with the little pink kitchen and accessories that she got while we were in Seattle waiting for her heart. This gave us more space to work with, so that was good.

I can't believe she is almost 10!!!  Before we know it she'll be all grown up! The other week she said, "Dad, I AM almost 12..." In that tweeny way kids get.  We laughed and told her she was almost 10 and has to be 11 before she can almost be 12.  Silly kid!

Hoping your Tuesday is filled with awesome!!

Love, Jen

2/6/17

Back to life...

Well, we are home and getting back to regular life!  Carla has started school again (for the first time since Christmas break) and we are keeping our fingers crossed that she will stay healthy.  I have noticed a little bit of bruising as well as random bloody noses, so have a call into Children's to see if they want to decrease the dose of blood thinner she is taking.  She will be taking a blood thinner for at least 6 months.

Our plan at this time is to see her cardiologist in Missoula in about 5 weeks and then to go back to Seattle in May, Missoula in June or July and then back for another cath in August.

I picked up Carla for lunch today and it seems as though her day is going well.  I think she looks quite a bit more pink and that she seems to have more energy.  Although, maybe I'm imagining things, who knows?

I am so glad that everything has gone as well as it has and am hoping that this band-aid will keep her healthy for awhile.

Love, Jen

2/2/17

Stent updated

We spoke to the doctor and he said everything went perfectly! Carla is getting much better blood flow to the bottom of her heart and we are so very happy and feeling blessed. She is sleeping now and we will spend the night for observation.

Thank you for the love and prayers! 

The stent opening is in between the two red lines. 

The stent is placed in between the 2 red lines... this is before it was opened.

Stent...

We arrived in Seattle last night around 5:00. We rented a car, drove the city, rented our room, went to dinner and then did labs at Children's.  We finally settled in for the night around 9:00, it was a long day. 

This morning we had to check into Children's by 6:15. We stayed at the Talaris Conference Center, just blocks from the hospital, to make for an easier morning. Carla's procedure started at about 8:00 pacific time and we are currently about an hour out.  They told us it would take about 2 hours after she was fully asleep.  So, we should get to see her around 11:00ish.  We will be staying at the hospital tonight and hopefully everything will go perfectly and we can come home Saturday as planned.  

Here are some photos from yesterday and today.  Bobby is actually with us too, he just didn't make it into any photos :)

All masked up to fly.  I told her we were "airplane ninjas"

Last night at Jak's Grill for dinner.  Good food and Carla LOVED the chocolate cake dessert she got!

This morning, with her plushy. 
Please pray everything goes perfectly!  I will update after we talk to the docs.

Love, Jen

1/14/17

Just hanging out ...

Since getting home last Sunday we have kept life pretty low key.  Carla's teacher brought over her work Monday evening and we have been doing school at home for several hours a day. It has actually been pretty fun and I've enjoyed not having to rush around during the day. On a normal day, Carla is up by 6:30, to school by 8:00, I pick her up for lunch at 11:00, bring her back by 11:45 and then pick her up from school at 3:30.  So, it's back and forth to the school all day long. At this point we have settled into waking up when we feel like it, and doing school work in our jammies.  So, that's no too bad!

I am working really hard at trying to keep my anxiety at bay, and to only worry about the things I have control of, but sometimes that's difficult.  It's also difficult to not try to look into the future and worry about the stuff there... but if I want to keep my sanity it is important to stay in the now, do what the doctors tell us to do, and pray for good results. Sometimes that's easier said than done, but that's the goal :)

Thank you all for your thoughts and prayers.

Love, Jen
I told her it was time to "put on your thinking cap" ... Silly girl. 

1/10/17

Coronary Artery Disease

There is a bit of confusion about Coronary Artery Disease (CAD) in transplant patients, so I wanted to clear it up.

CAD in an adult is due to too much bad cholesterol building up and causing plaque to obstruct the artery walls.  Eating a "heart healthy" low fat diet is suggested for this kind of CAD.

In a transplant patient with CAD, the artery walls are not clogged with plaque, but rather scar tissue from the white blood cells attacking the heart.  It is a form of rejection and has absolutely nothing to do with diet. Kids with CAD in a transplant case are put on a statin, but because they don't have high cholesterol, are told to eat a diet rich in cholesterol to prevent severe muscle cramping.  So, if human nature gives you the urge to be a busy body or to judge a heart mom for feeding her child what she sees fit, you should probably consider the fact that she is following doctors' orders.

Love, Jen




1/7/17

The Plan

We heard back from the hospital yesterday and so we finally have a plan.  We will be coming back to Seattle on Wednesday, February 1st for a February 2nd heart cath to place a stent in Carla's LAD. Per MyHeart.Net:

 LAD stands for left anterior descending artery. It is a coronary artery, which is the name given to arteries that supply the heart muscle with blood. The LAD is considered the most important of the three main coronary arteries and is almost always the largest. It’s called the LAD because is on the left side of the heart (left) it runs down the front wall of the heart (anterior descending). The Left anterior descending artery typically supplies over half of the heart muscle with blood, so twice as much as the other coronary arteries.
http://myheart.net/articles/the-lad-artery/

We will probably spend the night at the hospital for observation and then be released the next day. Carla's rejection score came back as a 1R, which is unchanged from what it has ever been. We didn't tell Carla right away about the blockage, because we didn't have a plan.  But, after we got the plan we explained to her that we would have to come back in a couple of weeks to have a stent placed (like Grandpa got) and that she would have more energy and her shoulder wouldn't hurt when she laughs like it does now. After confirming that she would be asleep for the procedure, she thought it sounded like a great idea.

I have been in touch with Carla's teacher and she is going to bring her work over on Monday and also come over to help her with the math. I know I have said this before but, I REALLY LOVE CARLA'S TEACHER!

At this point we are going to be pretty low key and are looking forward to a month of lazy mornings, because we don't have to rush off to school every day.

Thank you for your continued thoughts and prayers :)

Love, Jen

1/4/17

Heart Cath/Biopsy

Carla had her heart cath and biopsy today.  We spoke with the doctor about an hour ago and we have some not so great news.  One of her coronary arteries, which was clear of blockage 9 months ago, is about 40% blocked.  Dr. Kemna is talking about possibly placing a stent in the artery, but wants to consult with the doctors at the University of Washington hospital, because they place many more stents there than they do at Children's.  Also, Carla's heart pressures are up, so she is thinking the blockage is most likely causing that. Her former coronary artery blockage is still pretty much the same as before.

At this point we have a pickle with regard to timing and whether to fly home on Sunday or not.  I am hoping that the doctors make the decision about what to do before our flight at 12:30 Sunday afternoon.  Because, it would suck to get a message while on our flight home, to be back to the hospital next Wednesday for a stent placement.  But, we would want to go home if the placement would be in a month. 

This isn't the best news, but we have definitely had worse, and are more used to getting the rug ripped out from under us... so it is less shocking. 

Please pray that the doctors make a swift and wise decision and that Carla does perfectly throughout. 

Love, Jen