Two Crucial Days
February 11, 2007
**Major Update Below!**
The next two days are going to be tense. I took Dylan to the hospital this morning. If you don’t know his background, here’s the summary: Dylan was diagnosed at 3 months of age with Kawasaki Disease, which resulted in aneurysms in his heart. He has been through one surgery, and gone from us giving him 2 needles of heparin (blood-thinner) to his coronary arteries “growing into” all but one aneurysm, and being on baby asprin, once every other day to prevent scarring in his heart.
Thursday afternoon, Dylan came home from school, complaining he was extremely cold, changed into pajamas and carried his pillow and comforter down here to the family room and zonked out. He wasn’t anything like himself. I checked on him several times and he started to spike a fever. I gave him Tylenol, he barely ate anything for dinner, then watched Survivor with us and went to bed. Friday and yesterday, his fever came and went, ebbing and flowing with the Tylenol and Motrin we were alternating. Every time we thought we had licked it, it returned.
Last night (Saturday night), I decided that if he still had the fever this morning, the Children’s Hospital better have a peek at him since it had been long enough.
This morning, I woke to Thomas shaking me and screaming, “Diwwon needs Mommy! He’s cwying Mommy!”
Daren and I both flew to find Dylan, near passed out on the loveseat. He was shaking like a leaf. From what I could gather, he had gotten up and was very thirsty. He tried to pour himself juice but was so weak and shaky, he spilled it and thought he was going to pass out, so he put down the juice jug and flopped on the couch. Why he didn’t come to us first, I don’t know. He is a very independent kid.
He was burning up again, so I gave him some Motrin, got dressed, and took him to Children’s.
Once there, he was still weak, but in good spirits, responding to questions and prodding. They gave him two Popsicles and he perked up a bit. I was starting to think this trip had been a waste and meekly told the doctor so. That maybe it was silly for us to have come in.
He squashed my silly worry very quickly by explaining Endocarditis. It turns out, (And I can’t believe no health professional has told me this in the 8 years we’re dealt with Cardiologists), that people who have had heart damage are at risk for this. Think of it like a stream. When you get to the narrow part of a stream, where there are rocks and twigs, and the water flows through all that, there are little sections of water that swirl around and around, never really going through - like little whirlpools. Well when that happens in the heart, if there is bacteria in the bloodstream, it can cause an infection in the heart.
They checked Dylan for several symptoms beyond the usual ear, nose, throat, heartbeat stuff. They flipped at his fingernails, asked about back pain (kidneys), asked about intake and outake, tested his urine, listened again and again and again to his heart and it’s rhythms. All was fine. No murmurs, no irregularities. The fever is the most prominent symptom in Endocarditis, and the fact that it really isn’t accompanied by any other symptoms got them thinking about this possible diagnosis.
So for the next two days, I have to watch his fever. I checked him a little while ago and he was soaking wet with sweat, but not warm. I guess he is sweating it out. I’ll be sweating it out right alongside him.
I don’t know how to end this post but to say how much I want him to be alright. I know I shouldn’t surf for answers on this, but anyone who knows me, knows I have to have all the details when it comes to Dylan’s heart. Everytime I read this, I start crying again:
Treatment
High dose antibiotics are administered by the intravenous route to maximize diffusion of antibiotic molecules into vegetation(s) from the blood filling the chambers of the heart. This is necessary because neither the heart valves nor the vegetations adherent to them are supplied by blood vessels. Antibiotics are continued for a long time, typically two to six weeks. Surgical removal of the valve is necessary in patients who fail to clear micro-organisms from their blood in response to antibiotic therapy, or in patients who develop cardiac failure resulting from destruction of a valve by infection. A removed valve is usually replaced with an artificial valve which may either be mechanical (metallic) or obtained from an animal such as a pig; the latter are termed bioprosthetic valves. Infective endocarditis is associated with a 25% mortality.
~ Source: Wikipedia
I know you guys aren’t doctors, and you can’t promise a good outcome, but any words to help me manage this crushing fear would be great. I realize he might be completely fine, that this stubborn fever could be just that.
But I’m really scared here. Really scared.
**Update** Not much to report except that he is still feverish this morning. I gave him Motrin and he is drinking much more than he was, and also downed a Popsicle. He wants to stay in bed. This is not my kid. I want him to get out of bed and jump around, sing, dance, fight with his brother.
Thank you for all your comments. Amanda, they did not give him antibiotics. I don’t know why. I’m hoping you are all right about him not being serious enough to keep in the hospital. I stopped reading about this about 12:30 last night, crawled into my bed beside Dylan and tried to keep him warm. He had cold sweats and was shivering.
It is so hard to keep these tears back in his presence. Thanks everyone. I’ll keep you posted.
**Update #2** He ate a banana. Fever is going away with Tylenol/Motrin, but returns before the next dose is due. Waiting sucks.
**Update #3** He had half a bowl of cereal and is still feverish between doses. I’m trying really hard not to worry. Thanks for all your wonderful words and to my best friend for keeping me sane today on the phone.
**Update #4** He asked for a burger and Cindy made it happen! She bolted out to the nearest Harveys to get a burger (with pickles and ketchup please) for the little man. He got through a little more than half of it. Yay! The fever is still lingering, but eating is a good sign, right?
February 11th, 2007 at 11:56 pm
I have nothing at all to offer other than my promise of positive thoughts, prayers, energy whatever I can send to you, your son and your family.
I can’t imagine how scared you must be. I want to throw up for you and I would if I thought it could help.
You WILL be in my thoughts. Please keep us updated when you get a chance!!!!
February 11th, 2007 at 11:59 pm
Karen, I’m so sorry you and Dylan and your family are going through this. No wonder you’re scared. You will all be in my thoughts and prayers.
February 11th, 2007 at 11:59 pm
*hugs* to you and your family. I will keep you in my prayers and thoughts. Also, you did not know. So don’t blame yourself.
February 12th, 2007 at 12:53 am
I’m keeping Dylan in my prayers, hon. Hang in there.
February 12th, 2007 at 12:54 am
Having lost my son to an infection though not the same sort, I think I know a little bit of what you’re feeling right now. Deep breath, keep an eye on him and we will be keeping your family in our thoughts.
February 12th, 2007 at 1:50 am
Karen, I will pray for Dylan and for you and your family. Peace be to you.
February 12th, 2007 at 1:55 am
So sorry to hear about your little boy. I will be keeping you all in my thoughts. Sending hugs and prayers!
February 12th, 2007 at 1:57 am
Hugs to you. I hope your baby will be alright and that is it just a fever and nothing else. It’s normal to be scared. It means you really love your baby.
Just hold on to your faith. Don’t ever let go. Prayers being sent your way.
February 12th, 2007 at 2:26 am
Oh, poor Dylan. Endocarditis is nothing a small child should EVER have to experience. I got it about 15 years ago, and was in the hospital on an IV cocktail for about a week, and then antibiotics for maybe 6 more weeks. By the time I got off the antibiotics, I don’t think there was one bit of flora left in my intestinal tract, if you get my drift.
I’m pretty much in the same space right now with my daughter’s medical issues, so if you want to commiserate, let me know. I’m so sick of trying to put on a happy face. It totally sucks to have a child with a serious medical problem. I’m really sorry you have to go through this. It’s freaking scary to be a parent, isn’t it?
I’ll put Dylan on my prayer list, if that’s OK with you.
February 12th, 2007 at 2:40 am
I’m sorry to say that I don’t know anything about it. But I can relate with the being scared part. When I’ve been like that, I’ve had to listen to my counsel (four people I really trust), take deep breaths, keep myself healthy, and learn as much as I can about how to care for the little one.
All the best to you… and you will be in my good thoughts, as well.
Take care of yourself; he’ll need your strength.
*hugs*
February 12th, 2007 at 6:16 am
Karen … try to keep this one thought in mind: if he was in immediate danger they would not have let him go home. Right? So that’s a positive thing. Also, sometimes reading too much can scare the living daylights out of you. While I understand the NEED to find out more about Dylan’s heart, seeing as how my husband has congestive heart failure and I did the same thing, it might be best to steer your reading about the disease into another direction … it might be better to read about things like clinical trials for this disease or success stories. Maybe not today, but after this crisis is over. My prayers are for Dylan.
February 12th, 2007 at 7:06 am
Positive thoughts sent your way. Hopefully it’s just one of those nasty viruses that just involve a fever. They do exist…
February 12th, 2007 at 8:07 am
Karen, I’m so sorry you’re going through this! Like javajabber said, if they sent him home, then they must not think he’s in immediate danger. Just keep a close eye on him, and trust your mommy instinct. If something seems off, get him back there - mother’s instinct can be very powerful, and you know Dylan better than anyone at the hospital.
Lots of positive thoughts for you. Please keep us updated, and if there’s anything I can possibly do, please let me know.
February 12th, 2007 at 8:10 am
Oh my goodness sweetie.
The good thing about all of this is, that the docs gave him his antibiotics and sent him home. If it was really serious, they would have wanted to keep him and have him hooked up to an IV.
Infections like this can be overcome…Eric was septic several times (meaning a localized infection spread into the bloodstream…he started shaking uncontrollably and had a fever that we couldn’t shake) and he got over it with taking it easy, antibiotics, and time.
I’m keeping you in my thoughts. HHHHHHHHHUUUUUUUUUUGGGGGGGGGGSSSSSS!!!!!!!!!!!
February 12th, 2007 at 9:12 am
Ah, sweetie. I am sending all my best your way.
1. Thomas is so good! What a way to step in when he was really needed.
2. We are so lucky to have wonderful antibiotics. I had a very serious staph infection and had IV treatment for 6 weeks when I was a teenager and don’t seem to have suffered any ill effects whatsoever.
3. A friend has artificial heart valves and has been a competitive cyclist and is an electrician, living a totally normal life - modern heart surgery is an amazing thing.
4. I hope this passes and doesn’t come to any of that, though.
5. Hugs.
February 12th, 2007 at 9:15 am
Thinking of you, sending positive thoughts and tons of hugs your way. Give Dylan a big hug from me. xoxo
February 12th, 2007 at 9:21 am
I’ll be praying for your Dylan and you and Daren, too!
February 12th, 2007 at 9:26 am
i wish i had something more helpful to say…but i’m thinking of you and sending hugs!!
February 12th, 2007 at 9:34 am
I am so sorry to hear about your son. That last part got me and hit close to home. My grandfather had a genetic defect and had a heart valve replaced back with a pig valve back when they were first doing the replacement surgery. He went on to live many years more and lived a normal happy life.
I pray that your son gets through this and that the valve is not neccessary. I pray for strength for you and your family too. Hugs your way.
February 12th, 2007 at 11:07 am
I’m so sorry for your son. I’ll be praying for him. Keep us posted.
February 12th, 2007 at 11:41 am
Oh Karen. I hope that Dylan is feeling better right now and that my comment is no longer needed! I do not know the stress you are going through right now…but as a mother I can imagine it. My prayers will be with you and Dylan. You have seem to have such a wonderful family and I know you all will get through this together!
February 12th, 2007 at 11:53 am
I’m sending good vibes. If you lived closer I would bring you dinner.
February 12th, 2007 at 12:02 pm
Gnetle thoughts, positive thoughts & prayers to you Karen, Dylan, Thomas & Daren. Sure hope Dylan’s fever breaks soon! I can understand your worry and determined vigilance - sure hope you can all rest easier soon!!
February 12th, 2007 at 12:23 pm
Oh hon.
My thoughts and prayers … along with a ton of finger crossing and whatever else I can come up with.
Try to stay positive.
February 12th, 2007 at 12:23 pm
How stressful. I had no idea. I join others in offering prayers and best wishes. Keep us updated as you’re able.
February 12th, 2007 at 2:12 pm
I’m so sorry! What a hearbreaking read.
It’s always so sad when you feel like you want to offer consolation to a person but don’t really know what to say that will make a real difference. Fear of death and loss is what we all live with, but I guess some of us have to feel that particular fear more actutely than others sometimes, hey? I live every day with a fear that my husband’s ‘heart murmur’ will turn into something else, and he won’t make it home one day.
I’ve read a lot on Buddhist thought, and they’re very different to us Westerners that get protected from death. They get told at a very early age that nothing is forever, everybody passes at some point, and that it’s all impermanent, except the state of love and Grace that is there beneath it all.
I’m not sure that’s any more helpful than the western way, to try to avoid the (some day) inevitable, but at least they talk more openly about the state of Grace that underlies all the impermanence, being something that we can connect with in life.
If we can do that, then death holds no fears, we know what there is afterwards, awaiting all of us, whenever our turn comes, at 5 or at 95.
My best wishes to you all, and I’m sure it’s a temporary ‘kid thing’. Fevers happen all the time for most kids.. as I’m sure you know at heart.
Just live every day with him and love him as much as you can, love heals a lot that the body might otherwise suffer.
February 12th, 2007 at 2:32 pm
I can’t imagine what it must be like for you right now. Dylan is in my prayers, and I hope that he shakes this thing likety-split.
This doesn’t have a lot to do with it, but my cousin has an artificial valve and she is doing great. She was born with 2 holes in here heart and has had a valve and pace maker since she was an infant. She is as healthy and normal as any teenager I know.
I am sure everything will be fine. Big hugs to you and your little boy!
February 12th, 2007 at 3:04 pm
Will be praying for all of you.
February 12th, 2007 at 3:06 pm
I just found your blog today and this was the first post I read. Please accept my heartfelt best wishes for you and your son. I have a boy the same age and cannot imagine what you must be going through with the worry and stress. Thinking of you all….
February 12th, 2007 at 3:31 pm
I hope things are better!
February 12th, 2007 at 3:58 pm
I hope that he gets better soon. It is so scary when your little one is sick.
February 12th, 2007 at 4:18 pm
Oh hun. Oh. boy.
Ok. take a deep deep breathe. Just stay in Mommode and focus on the positive.
We’re all here for you and ready to come your way if need be.
February 12th, 2007 at 5:19 pm
We are all with you and your family Karen. I know that there is a very nasty fever sickness whipping around right now and I am hoping it is what he has.
Strength to all of you.
February 12th, 2007 at 5:39 pm
Though we have never meet - I am here for you. Would be a nightmare, but sounds good and that he is getting better.
Love and kisses
February 12th, 2007 at 5:46 pm
Oh Man, that sounds terrifying. I hope it’s nothing more than a short - lived flu bug. Here’s to healthy days in your near future.
February 12th, 2007 at 7:13 pm
Augh, that bites. Hard, and with sharp teeth.
My husband had pericarditis, not quite the same thing but in the same neighborhood, when I was 6 months pregnant with my second child. It was scary as hell, and then just went away. Like it had never happened.
Sending healthy-heart vibes your way…
February 12th, 2007 at 7:23 pm
I’m glad I could be here although I’m sure I don’t make sense half the time, I snort sometimes when I laugh, I tell you every move I’m making, I burst out laughing on occasion and say “oh my gawd” a million times. I’m not sure why you’ve not punched me in the face more than you have. Anyhooo, I’m sending lots of hugs, love and kisses for you and Dylan. I’ve sent word to my personal, special Angel to keep watch over your little man.
February 12th, 2007 at 8:18 pm
Oh, Karen. You are in my thoughts. This has to just be hell for you. Take good care of yourself and I’m sending positive, happy, healthy vibes up north to you.
February 12th, 2007 at 8:52 pm
Karen, I’m so sorry this is such a bumpy rode. I hope dylan is feeling good and up and out of bed soon. I can’t imagine how scared you are. Sending lots of love and positive thoughts your way!
February 12th, 2007 at 9:45 pm
I’m sending you love and positive thoughts. He’s going to be fine, mama.
February 12th, 2007 at 10:39 pm
A VERY good sign.
Sleep easy, my friend. Or at least get some.
February 12th, 2007 at 10:47 pm
Oh ya. A burger with pickles is a good sign.
And if it is this weird fever, and I think it might be…it may come back in a day or two, so hold fast. But a burger with pickles…yup. I have faith.
get better buddy, we are all rooting for you.
February 12th, 2007 at 10:52 pm
((((((((((((((((Dylan)))))))))))))))))))
I hope by the time I have written this that you are well on your way to feeling 100% better.
Karen,
Just keep holding him. Nothing does as much as a mommy’s love. And I would have searched my heart out on the net too. I become obsessed when my kids get something major. I am sending ever ounce of love and prayers in your family’s directions.
February 13th, 2007 at 12:04 am
Thank you everyone. I just checked him again and he’s still got the fever. Hopefully this thing breaks tomorrow. G’night and God bless you all.
~ K
February 13th, 2007 at 12:50 am
I just happened to stumble across your blog. My thoughts and prayers are with you and your family. God bless you.
February 13th, 2007 at 1:05 am
My thoughts are with you and Dylan. I wish him a full and speedy recovery.
February 13th, 2007 at 8:59 am
Had you guys on my mind and heart this morning. Hope all is still looking up.
February 13th, 2007 at 9:06 am
[...] « Two Crucial Days [...]
February 13th, 2007 at 9:12 am
Glad to read the burger update… I hope this is the beginning of the end of this horrible time. Take care. Get better Dylan (what a great name!)
February 13th, 2007 at 9:16 am
[...] p.s.? Head on over to Karen’s and give her some support.? Rough days at Troll-Baby, rough days.? Posted by cpamomva @ 9:16 am [...]
February 13th, 2007 at 10:29 am
Oh bless y’all’s hearts. I’m so sorry sweet Dylan is sick. And I’m so sorry for you, having to worry so about sweet Dylan. I’m thinking of you and praying for good news.
February 13th, 2007 at 10:34 am
[...] (Found via the beautiful Tastespotting, which I found via the lovely Troll Baby, who can still provide sweet links in the midst of trauma. Go send Karen some love today if you have a chance.) [...]
February 13th, 2007 at 2:14 pm
Fevers suck, waiting sucks. Prayers and thoughts are with you and your family.
February 13th, 2007 at 2:36 pm
I’m sending you the most ginormous cyber hug ever. Please share it with Dylan and the rest of your adorable family.
February 13th, 2007 at 2:51 pm
Karen — I’m sorry to hear that Dylan has not been well. I’m thinking of all of you and praying that these days pass quickly and uneventfully.
February 13th, 2007 at 5:37 pm
Oh Karen, I’m sorry =(
I hope Dylan gets better very soon, all this is scary stuff! Please give him a huge hug and kiss for me?