Easter 2014

We got to church this morning just in time to actually get a seat even if our family was divided into two benches.  Better than standing.  Jaemin wasn't too bad through either.  Yesterday, Kaelin and I ran to the bakery to get special donuts for everyone.  That's our Easter treat.  We don't normally do that sort of thing.  We dropped off a gift card to Subway for the family of a friend who is gravely ill.   We got quite a lot done yesterday.  After all that we went to my mom's for a really quick Easter hunt for the kids, then to Brian's mom's for dinner and hunt.  Today was church and then my grandma's for lunch and hunt.  It's always nice to see my aunts, uncles and cousins that I don't see all that often.  It's fun to see my cousins' kids playing with my kids and they really have fun together.  The oldest doesn't allow pictures anymore, so there are very few.  I wish he would let me do more.  The youngest four don't mind so much.  Here's all the great pictures.

Flippin Fun

Not much time to post, but have to sow what my baby girl did last night.  She's in her fifth year at gymnastics, but because we only have time for and can afford one session a year, it's really only her fifth session.  I was chatting with a girl ay work and looked down and realized that just like that she got it.  She did a round off into a back handspring with only spotting.  She had no idea she was doing it on her own until I showed her the video.  My little premie.  She's smart and talented.

Soccer

We signed Jaemin up for soccer.  He's never done an organized sport and in our town, it's pretty laid back.  This was perfect.  We needed him to just learn to be part of a team.  He does try, I said try, to listen to his coach.  He's very literal when he does listen, which is good.  He tried for awhile and then just got bored.  I'm hoping he'll build on it each week.  He does love seeing himself kick in a picture I got, so I'm hoping that incentive for him to not quit half way through next week's game.  :)

We shall see.

Jaemin resting as usual.

The bills are rolling in

My husband is so funny.  But, on the flipside, if I didn't work where I do or be the one to pay all of the bills maybe  I would have thought the same.  I told him what the bill for the hospital was and he thought it wasn't too bad because he thought it was for the hospital, doctors everything.  I laughed.  I explained to him it was $107,000 for 4 days to use the hospital.  Of course, this includes his meds, xrays, tests, etc.  And to be honest, I didn't really think it was that bad since his bill in 1997 was $108,000 for just a few days longer, so about double in 16 years.

I'm hoping and praying insurance will adjust that bill out first so that our portion will go to the facility and maybe I can work out a deal with them.  After that we'll be maxed out at the $6,600 allowed.  It's such a big deal that of that $6,600 I can get as many deals as I can because I'm only allowed to save about $6,500 in my HSA and we have no dental or vision insurance (because it's too much), so out of the $6,500 I have taken out of my paychecks annually, some of that needs to pay for these areas too.  As anyone can figure $6,550 to pay for $6,600 in medical bills and $? in dental bills for 7 is not enough.  I will need these discounts.  And while some may think that's a lot to have $6,500 taken out of my checks annually, you should always max out your HSA because you never know when you'll need the money and it's tax deferred this way.  Not to mention, we have yet in the 2 years I've been in this plan and maxing it out to have anything left over.  Annual ekgs and echos are expensive. This year was just the max.

I did get a bill from Cole's February MRI for $1480.00.  I was able to ask them if they had discounts to pay off totally and they finally, after a lot of other not so great options, offered a 15% discount.  I happily took it.  That's $222 towards our dental visits we'll get later in the year.

I know it will all work out, but I will be a little tense until it all pans out.  Needless to say, everyone will be getting every medication and doctor's visit they need this year since we will not be responsible for anything over the $6,600.  I hope one day to have money left in our HSA, but with 5 kids, it's not likely.  Cole alone uses up more than 1/2 our deductible every year.

Still a little mad

Cole did go back to school part time.  This meant I returned to work part time.  A lot of coworkers were checking in to see how he was doing, etc.  They asked about the surgery etc.  I was telling one of my friends about the Saturday Brian came home.  Like I posted that day, Cole was in a really sour mood.  He was in a ton of pain and they were still trying to regulate pain on a kid that size when they're not that used to it.  He had had a bad time of it and didn't want to see anyone, so I had called Brian at the hotel and told him to tell his parents not to come to the hospital before going home and why.  I went to the lobby to watch the kids so he could go tell Cole goodbye and sure enough my mother-in-law showed up anyways.  I just don't know why she can't respect anything I ask of her.  This is MY kid.  I was doing what he wished.  I told her that he didn't even want me there and the only reason Brian was coming in was because he was leaving to take the kids home and we didn't know exactly how long we'd be there.  

I wish just once.  Just once.  She would look at her son and say 'I know you have this.  You're a good dad and I'm proud of you'.  Instead we hear how much she needs to help us and even when we say we don't she pushes her way in.  She even told him that 5 kids were a lot to manage the first night we were going to be there before the surgery.  He did actually tell her, or should I say remind her, that we've been doing the 5 kid thing for 5 years now.  We know what it takes.  

I never mind offers for help.  I've taken some up on their offers.  But, I will most likely push back and refuse all help from you if you continue to push when we say no.  We will take it if we need it, but we try to do what we can and over the years with all of the stuff we've been through we've learned what limits we have.  That's when we will take someone up on an offer.  It's something I've had to work on, but I have worked on it and gotten better at it.

However, with my mother-in-law I just can't let her help because of the way she behaves.  I'm so irritated that if she ever steps up to me again I may just let her hear it because I don't think I can do this any longer.  I mean her son specifically told her Cole did NOT want to see anyone.  He was not feeling good.  RESPECT our wishes.  RESPECT his wishes.  She just ticks me off!!!!!!!!!!!!!!   And, yeah.  I'm still a little bitter because it's happened so much, but this one was icing on the cake, I'm done!

Time to move back

into normal.

Cole is just 11 days post op and he wants to try to go back to school part time.  First we have to work some things out with the school and then if things go well, he'll go ahead to 4 hours of school tomorrow.  Then, next week he'll go back full time, towards the middle of the week.

I'm really happy for how well it's gone, but a little nervous about him trying to go back to normal.  The doctor let us know how important it will be that if he gets cut or needs stitches we get antibiotics right away.  An infection could more easily go to his heart and reject the valve causing another open heart surgery.  It wouldn't even be a cath at that point because the infected one would have to be removed.  This threat is for 6-8 months and then we should be able to really breath.

I'm ready to really breath and very thankful it's not more than all of this.  He even said he rode 6 miles on the exercise bike last night after he went for a walk outside.  The fluid is off his lungs and the doctor said it all looked good.

Tetralogy of Fallot and MY Kid

Like most parents, you live your child's lives. Not live through them, but live for them. Meaning if they're going through something you read about it, learn about it and guide them or console them if possible.

Right now my focus is on Cole. He did extremely well, but now that his heart's been 'messed' (their words not mine) again, it can be thrown off and forget what to do. His sternum has been cut open once again, so this will make future surgeries more fun for the surgeons because each one can add scar tissue and adhere the heart to the sternum. The very reason they try to find alternatives to limit the number of open-hearts one person has.

A lot of people have asked what he has. Tetralogy of Fallot sounds so huge and technical. It's really:

1) Pulmonary Infundibular Stenosis A narrowing of the right ventricular outflow tract.

2) Overriding aorta An aortic valve with biventricular connection, that is, it is situated above the ventricular septal defect and connected to both the right and the left ventricle.

3) Ventricular septal defect (VSD) A hole between the two bottom chambers (ventricles) of the heart.

4) Right ventricular hypertrophy The right ventricle is more muscular than normal, causing a characteristic boot-shaped (coeur-en-sabot) appearance as seen by chest X-ray.

Cole actually had a pulmonary valve at birth, but due to #1, it was removed and a patch put in it's place making it a monocusp instead of bicuspid. Cole had 2 large holes instead of 1. These holes are the actual reason tet babies turn blue or have cyanotic spells. Once the holes are fixed the baby should no longer turn blue unless the patches fail. After this, not having a pulmonary valve or one that doesn't work right, the blood will regurgitate back into the right ventricle instead of flowing to the left. This causes an enlarged right ventricle and low blood flow to the rest of the body. It can also cause failure of the right muscle and it can forget how to work or loose elasticity and not work even after repair, requiring transplant.

They had been watching Cole so closely that while the upper leakage at his pulmonary valve had caused such enlargement that another lower leak developed, they did surgery before it really (or they think as of now) began to loose it's function and elasticity. Because of his condition and where the repair is, open heart will always be necessary over going through a side rib. However, it's possible now that he actually has a bovine valve with a stent already in place, the next surgery may be prolonged by installing a Melody Valve via cath instead. It's new, so they do not yet know how long this will put him off for full valve repair via open heart surgery. Their goal as of now is to make it 10 years on this one.

The reality is that in the support group I belong to for adults and children with tet, some do not survive, some require transplants, some develop rhythm problems. All of these are extremely life threatening, but many can do well with the right interventions and great physicians. Ours will be one.