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.

One week post op.....open heart surgery

The grandparents have stopped by, one of his aunts have stopped by and his girlfriend has been here, I think, 3 out of the 4 days.  Things are beginning to die down.  Cole has started his homebound schooling.  He basically, has to work on his own and get done what he can when he can.  The catch is the more on-top of it you stay now, the easier it will be to transition to being back.  They just have to figure out how to administer the tests and quizzes here, so he doesn't lag on those.  His algebra teacher came last night and gave him all his homework and then stayed 2 hours to explain how to do what.  He got all of it done last night.  He got his history, from last night, done this morning.  The principal stopped by this evening to drop off more.  A LOT more history.

He goes back Monday for a post-op visit with the surgeon.  They'll check function with the ekg and echo and then check the fluid on his heart with a chest xray.  The nurse already told us going back to school is going to be up to us.  She doesn't want him jostled around, so we're pretty hesitant to do it too soon.  We'll see what they say after the xray.  That will also tell us if his sternum is starting to heal or not.  I would expect late next week at the absolute earliest.  He may get stir crazy before then.  He is going fishing Sunday since it will be warm enough.  He's not allowed to drive or be on a boat.  Doc said bank fishing only, but he'll take it.

I'm very impressed with him.  My mom came yesterday morning and took him for a walk down the road.  He definitely does better than I could have have imagined.  He said today he was able to shoot pool.  He said it's sore, but he can do it now.  So, he is getting some range of motion without severe pain.  We still have some oxycodone if it gets bad, but he hasn't taken anything except Tylenol and Motrin since leaving the hospital.  I suspect going back to school could be hard and he may end up sore that night.  The doctor says when he starts driving in a couple of weeks he could get sore trying to make turns.  We'll see how it goes.

He's standing up straighter.  His shoulders are going back a little.  He's stretching out a little.  He's definitely gotten skinnier, if that's even possible.  But, he'll get back.  He'll have to make a conscious effort.  His appetite has decreased, but some of that may be because he's not as active.  Day by day it will get better.

Day 4 - Post Op Pulmonary Valve

So, last night we had gotten moved to TCU (Transitional Care Unit).  He said he woke up in the middle of the night and was in more pain (not near what it was the rest of the weekend) than usual and they gave him another oxycodone.  Other than that, he's been just on Motrin and Tylenol.  He was walking everywhere they needed him to go, like xray, with no issues at all.  He would get up like he never had anything done at all.  The nurse told him to walk to the nurse's station until she saw him get out of bed and walk with ease.  Then she told him to make some rounds instead.  He drastically improved last night.  They redid ekg, echo and xrays today.  There's some pretty good pressure in the valve right now, but they said that will get better.  It's a big valve that they had to make smaller at one end to attach.  They still think he's going to grow, so they went with a bigger size bovine valve.  His lungs are still showing fluid on them, but they think once he really become a little more active that will absorb, but they put him on lasix for the next week just in case.  We go back (2 1/2 hours each way) to the surgeon on Monday for another check up and back to the cardiologist at the end of the month.

Needless to say they were so impressed that they sent us home late this afternoon.  Insurance had us approved through Thursday as a week is pretty standard for this procedure.  This 4 days (including the day of the surgery) is pretty much unheard of.  He still hopes to go back to wrestling this fall and I do think he's tough enough to do all of this.  I'm really impressed. He was upset with that chest tube.  And he did get very visibly upset.  It never once made him weak.  It could have made anyone on this Earth cry.  But his recovery has been amazing and he IS very strong and very tough!