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!

Day 3 - Post Op PV Valve

It's Sunday.  He was moved from picu to tcu at about 3 this afternoon.  The chest tube came out about 8 or so this morning.  As of last night they didn't think it would, but the Dr decided it was ready this morning.  It took longer than they expected because he was upset.  That thing had been causing so much pain that I think the idea of it coming out upset him as much.  He hasn't had any oxycodone since early this morning.  They now just down to toradol and Tylenol.  He said his chest still hurts but he could breath.

His demeanor towards me hasn't improved much.  I've resigned myself to just not offer anything or say anything unless I have to.  The majority of the time, if I do I'm wrong or he just gets annoyed.  So mostly we sit in silence.  He does fine when the nurses are around, though he tries to get out of doing what they want him to like sitting in a chair, walking or doing his Spirometer tests.

When they did get him to walk today, he took off like it was nothing.  It didn't seem to bother him at all.  He's creepiest just sitting in bed. I don't know.  I guess I try to hard, because I just make him unahappy.

At least this morning I got to visit with my friend Jane.  She lives in the area, so it was once to sit and talk with an adult...and not someone who constantly rolls their eyes at me.  Hope tomorrow gets better.

It's not personal

Or thats what I tell myself.  He doesn't want to see anyone.  He wouldn't even let me take a picture for the little kids kids since he didn't want to see them.  As you can tell I took one while he snooker for a second.  He's almost more irritable today.  I'm now in the lobby.  I just had to step out.  It's been a couple days since he had his retainer in and his teeth moved the last time he skipped just one night.  I insisted he wear it for a bit today since there's no longer a choking risk and then he can wear it again tonight.  He was pretty ticked I wasn't and couldn't give in.  I just needed to step out and figured I could wait for Brian and the kids instead.

Day 2 New valve

I shouldn't really say new valve since he didn't have a pulmonary valve, but it is new to him.  He was leaking so bad where it was supposed to be that his right ventricle enlarged so much that it had caused a lower valve to stretch out and begin leaking.  The surgeon said once the bovine valve was in the ventricle reduced some and the lower valve stopped leaking. 

He didn't sleep real great past night and they told him if he didn't start taking deeper breaths he'll further his risk for pneumonia.  His chest tube is still causing quite a bit of pain despite oxycodone, so that's making it harder for him to really breath.  Once he stops draining so much blood and fluid they'll remove the chest tube.  Probably not for a day or two.  He's not a happy camper right now and doesn't want to see anyone.  I told them everyone will have to respect that as long as he's in pain and doesn't allow himself to slip into any sort of depression.  This reaction is quite common after this painful of surgery from what I've read.  We think step down tomorrow, but I'm going off a doped up 17 year olds memory for that.  The rest of the family is going home today.  I think that will be better for them and they can settle in before school on Monday.

He did get his Cath and 2 lines out this morning, so that's an improvement.

One of the longest days ever!

We got to the hospital at 5am.  They took him to put him out by 7 and had him opened by 9.  They said he scar tissue from the first heart surgery wasn't too bad so they didn't have any problems getting to his heart.  They had the valve in and he was off bypass by 1pm.  He wasn't happy with the breathing tube so they sedated him a little more and we finally saw him around 4 pm.  Not quite as long as last time, but close.

He was in quite a bit of pain and as soon as he was even slightly coming out he began signing to the nurse what hurt and that he needed his tube suctioned.  Thank goodness she had had some ASL in college.  We got in there and she looked at us funny and asked if he knew sign.  We told her that was his foreign language in high school.  She was amazed he was lucid enough to do that.  What they didn't catch he signed for his iPod and typed out short words.  They're really amazed by how strong he is and once again he amazes his mother.

Hour by hour, then day by day or will get better.  This is what I kept telling him when he was first upset.  I wanted to cry for him so bad, but that would have made things harder for him.  I pray things will just get more and more awesome for him.