July 14, 2014

Results of Joseph's Echocardiogram

Remember in my last post when I had said that I finally saw a tiny bit of improvement in Joseph?

I take it back.

The next day everything was right back to the way it was and has not improved.

But nor has it gotten worse.

So I count that as a blessing.

Joseph is dealing with it okay. We have good days and bad days. Occasionally, we have a really, really bad day. There are times his frustration is almost palpable.

One day I found him laying in the hallway whimpering. When I asked him what was wrong, he struggled to get up but had such a hard time he simply slumped back down. Crouching down I asked him again what was wrong. He tried to say something but again was frustrated that it was hard to talk.

I asked him if he hurt anywhere, he shook his head no. I asked if he was just frustrated because of how his body is behaving, he nodded.

He doesn't talk much anymore and when he does I often have to guess at what he said or ask him to repeat himself.

Yesterday morning when we got dressed for church, I noticed his pants were looser than before. He must be losing some weight because it is so difficult to eat. While he eats the meals I set out, he doesn't snack much so I do my best to supplement his meals with health shakes, green smoothies, etc.

I suspect he may be losing a bit of muscle mass as well because it's too hard to be active. I need to take the kids to the swimming pool more often, that seems the easiest way for him to be active, in the water.

Anyway, now for the news on his echocardiogram.

We went over to the hospital for the ultrasound on Wednesday. While we waited Joseph tried to get comfortable.

Tennis shoes are frustrating for him to put on so he prefers flip fliops, but they are very difficult for him to walk in right now, so he generally kicks them off as soon as he sits down anywhere.

We were finally moved into a room and got all set up. Joseph preferred silliness to smiles.

I'm not gonna lie. Watching the ultrasound of his heart was fascinating. Our human bodies really are quite remarkable.

The ultrasound tech kept teasing him on how "ansty" he was and repeatably but kindly asked him to hold still. I had to explain everything to him so he understood why Joseph was having such a hard time holding still.

I asked the tech if he noticed anything off the cuff to give him cause for concern. He replied that he wasn't the expert, but nothing looked worrisome. Joseph did have what looked like some leaking in a couple of his valves, but nothing serious.

I wasn't entirely sure what that would mean, but grateful the tech didn't feel the need to call anyone in for something serious.

When he was done and Joseph sat up, the tech remarked on a large bruise that had formed on Joseph's back. I said that with his current condition, Joseph has been falling a lot.

Sure enough as soon as we left the room, Joseph tripped over his feet, slammed into the wall and fell to the floor. He didn't say anything, just looked up at me while I helped him to his feet.

*sigh* I wish I new what he was thinking when those things happen.

 Friday I received the call with the results.

The pediatric cardiologist who spoke to my pediatrician said that overall, Joseph's heart looked good.

However, there is some "regurgitation" in his micro-valves. In other words, the blood that is being pumped back into the hearts from the body that gets pushed onto the lungs, those valves aren't closing all the way creating some "regurgitation" back into the body.

In any normal, healthy body, this would not be a cause for concern at all and would not be odd if the condition were to stay and never cause any trouble

However, is can also be a sign of early rheumatic fever.

So in Joseph's case with the strep and choreathetosis, he will need to be watched and seen by a pediatric cardiologist, possibly for the next few years to make sure it doesn't progress and get worse. We'll see how it goes at our first appointment.

So there you have it.

The last bit of news I received about Joseph's future (although I had found out before the echo was done) threw me for a loop.

I did not see this coming.

When the neurologist first told me that after the initial ten days of antibiotics was finished we would do another round as a preventative measure, I figured that was that.

Apparently that's not the whole of it.

According to my doctor who spoke with specialists, Joseph will be on antibiotics for the next 10 - 13 YEARS.

Yup, you read that correctly. YEARS.

I distinctly remember sitting up from where I was laying on Claira's bed in the girls room, hiding from the noise of the kids while I talked on the phone, and with a lot of hand chopping movements for emphasis that no one could see (because apparently my hands get all expressive when I talk) told my doctor to, "Wait wait wait wait, back up a minute. You started speaking to me Chinese just then. What did you just say? I'm pretty sure it used the words "antibiotics" and "years" mixed together in the same sentence."

Sure enough, Joseph can either drink the pink amoxcicillon twice a day for the next 10 to 13 years of his life, or he can get an injection once a month until he grows out of adolescence.

Like I said.

Did not see that one coming.

Because the risk to his heart is too great now, we just need to eliminate the possibility that Joseph could catch strep again, especially if he doesn't exhibit normal signs of having it. And I guess strep doesn't usually build a resistance to antibiotics, so this is the route we have to take.

It took a while for that to sink in and tell myself it's all okay. Besides, I know enough people, even a couple kids with conditions that require them to get shots almost daily.

So really, once a month isn't so bad.

I really feel humbled at the help people have offered, especially with Hubby away.

For starters, people have actually said yes to watching my crazy brood when I've needed to take Joseph to doctor's appointments. Someone brought me dinner out of the blue, and my neighbor mowed my lawn for me.

I've always had a hard time accepting help from others, in truth I feel foolish having to ask or be the one who needs help.

So when I say I feel humbled, I mean it.

And I deeply appreciate it.

I really, really do.

8 super cool people speak:

Stacy said...

Wow, just wow. Every so often, I look at my kids and think "I should have gone to med school." You're probably feeling much the same way.

You are so strong. I know it probably doesn't feel that way right now, but you're just the mom to guide Joseph through this. And doing it without your husband home? Amazing. I'm glad that people are helping you, and even more glad that you're letting them.

I'll keep praying for you.

Megan Jones said...

I love you Sarah, and Savannah, Joseph, Jacob, Alayna, Claira, and Jackson. I'll throw Luke in there too ;) You are strong, but it's okay to be weak. Joseph is so very lucky to have you as his mom. Hopefully this can be a time of bonding for your family. You and Joseph can improve your relationship and the other kids can work, play, and grow closer together as well.

I know it's hard to accept help from others, been there, done that. But you can do it. And the next time you have a friend in need, you can pay it back/forward whatever.

We will continue to pray for you guys!!!

Fran said...

So sorry to hear that Joseph is still struggling and that his physical body is not responding as fast as we would all hope. I will be there at the end of the month and will have to arrange for you to have a break...I will even do toilets :) We will begin to add Joseph to the Prayer Roll weekly and will add the rest of all of you as well. We love you.

Heidi D said...

Sorry to hear this is turning into a whole lot more than you were expecting, I will keep those prayers coming. So glad to hear you have local support, I am on the other side of the world so although I can send prayers am not so helpful with the practical stuff. I understand it can be difficult to ask for help, I tend to be all "I'm fine" when people ask if they can do something but am gradually learning to accept help. Remember that when you let someone help you are allowing them to receive the blessings from giving service

Saimi said...

I'm sorry Serene
Sending you a big cyber H U G

KT said...

I used to follow your blog awhile ago. I just found it again, and, WOW. You are dealing with a lot. Sending long distance prayers and hugs for your family from someone you don't even know in real life. Good luck and, as a friend of mine likes to say, traveling mercies.

Valerie said...

I'm so glad you have people around you to help. You are amazing and have so much to deal with. I hope your little guy is feeling back to himself soon.

Brandy Lynn said...

I don't even know what to say other than you guys are in my thoughts and prayers. Hope things start to improve for both of you.

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