This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

Eli’s cough has left the building.

We traveled together to Michigan, and I have a lot to say about my first plane rides with Eli.

It went so well the stewardess asked if she could spike my coffee. It was 5:45 a.m.

Answer: “Yeah. Supersize it?”
Mommy u so funny

I’ll get to our plane ride later.

I’ve had so many visitors and had such lovely travels I fell off of my writing routine. And so far off the Weight Watchers bandwagon it’s not even funny! Oh well. It was worth the apple pie and Michigan beer and fried chicken (OMG Ann seriously that was good. And what did you put in those green beans woman???. Don’t answer that). I love food.

Back to Eli’s lungs.

(btw if you want the background on this, here’s the category, read backwards, this is the fourth in a series).

We’re finishing up a 21-day round of antibiotics tomorrow. He’s taken it like a champ. I’m so relieved he’s not coughing any more.

My friend Alyssa warned me that I’d flip out about his first cold. I knew this to be true. And I did. But we just pushed forward, did the care, and luckily, it didn’t stick in buddy’s lungs. With every little thing that comes up, we get stronger and wiser, or so it seems, or so I hope. That lasts until I flip out about the next new thing that comes up. But as the CF clinic coordinator Debbie said — “Don’t flip out — it’s a waste of energy.” She said that in a really nice way. Because Eli gets a throat swab every month. And every month, I’m afraid to know what is growing back there. Will it be one of the bad bacterias? Something that gets in his lungs, sticks, grows, steals my baby’s breath away a piece of ruined lung tissue at a time? It’s not like I live in this state, but those questions are always there, tucked away in some corner of my mind. The day-to-day – ya know Eli’s cuteness, Laila’s outrageous-ness, writing about violent death, dinner, the dishes, attempting to spend a few minutes just chatting with Mark at the end of the day — this is the stuff that fills my life, not Eli’s disease.

Might I add a friendly reminder: wash your hands frequently and cough/sneeze into the crook of your arm.

Cover your mouth when you sneeze! Wash your hands a lot. Don't hurt me with ugly germs!

Cover your mouth when you sneeze! Wash your hands a lot. Don’t hurt me with ugly germs!

Back to Eli: He’s come up with positive cultures (if that’s the right term) for two different bacterias with scary-sounding names. The ones they found are bacterias that like CF lungs but they aren’t the ones that we fear the most. There’s a group of those bacterias. A special group of rude, ugly bacteria that can do more harm than others and are treated more aggressively when detected.

As you can imagine when a throat swab comes back positive for a bacteria with a charming name like “Haemophilus influenzae” my first question was “Should I flip out right now?”

And my follow-up is like:

“If so, to what degree?”

I do, even if I’m advised this wastes energy. My stomach gets jumbly and nervous and I feel quite down that my son has to deal with this crud. And I feel lost and out of control because I don’t fully understand this ugly-named weird thing living in my kid’s throat. Then I research. And I usually don’t like what I find. It’s still better to know:

Haemophilus influenzae (including Hib) is a bacterium that can cause a severe infection, occurring mostly in infants and children younger than five years of age. It can cause lifelong disability and be deadly. In spite of its name, Haemophilus influenzae bacteria do not cause influenza (the “flu”).

Oh yeah, and

The most common severe types of Haemophilus influenzae disease are:

Pneumonia (lung infection),
Bacteremia (bloodstream infection), and
Meningitis (infection of the covering of the brain and spinal cord)

Great. Neat-. Amazing. Awesome. Thanks CDC!

This is in my baby’s throat, and these are the things I think about and pray don’t go anywhere and cause trouble. And you know, I don’t even bother bringing this up to anyone except medical people and CF moms, because I don’t want to blather on about the bacteria living in my kid like some moms do about the milestones their babies are hitting — early. EARLY!

Neat, he’s already talking? Well my baby already has haemophilus influenzae!

I don’t want to report on something I don’t understand. By the time I got those test results, Eli was already on an antibiotic.

Any how, he coughed, and he went on an antibiotic for the cough, and hopefully, it knocked out this ugly-named bacteria, if that’s even what was in his lungs. Because from what I understand, sometimes the bacteria they find are just having a tiny-ugly germ party in the throat.

Screw you, bacteria. Except for the good kind we need.

So it’s back to normal. Regular baby stuff and just two half hour sessions on his vest a day. This fits into our life. I’m not saying it’s always a breeze – he has other ideas some days. Still, I try to take that time to interact with him and play with him and hold him. I’ll put a movie on for Laila, too, so we can sit together. Or read books to them on the floor.

Out of no where, he’s decided it’s time to get moving. This is pretty funny when he tries to scoot on his machine, because he is hooked to it via two vacuum tubes. As soon as we got to Michigan he got up on all fours for further baby strength training. It’s really really darn cute.

Now it’s time to relax.

Goodnight!

Advertisements

4 thoughts on “My buddy and is lungs 4: scientific bacteria names lack…charm

  1. wanderlust42 says:

    I completely hear you on the flipping out side of things. I really hope that bacteria takes a hike really soon.

    Thanks so much for the advice one getting the vest. You must be more persuasive than I as our docs won’t budge on getting it for our little guy until he’s at least two. 😦

    We just had his check up (all day) yesterday and are waiting in the lab results. You story today though reminded me of the time Jude got a fever at Christmas time over the weekend so we had to go to ER. Our poor older toddler son was doing his best to amuse himself during the long ER visit. They did a swab and gave Jude antibiotics through an IV and prescribed some more for him to continue at home. He seemed to be feeling better so we went home to continue visiting with family that had flown in from out of town and out of the country. That night at 3am we get a call from the ER saying that we needed to come back immediately with Jude. That a seriously dangerous bacteria had been found in his culture. We go in this time leaving the toddler at home with the visiting relatives and they tell us that Jude cultured bacterial meningitis. That everyone we’ve been in contact with needs to go on severely strong antibiotics and the CDC has been notified and will be in contact with us. Everyone in the entire ER (all the staff, everyone!) had to go on this course of antibiotics that turn you pee bright orange for days. Jude had more injections of more antibiotics. Theyvrun more labs on him. We had to call all the family (that had already flown out of state back home) to let them know. The CDC calls and interviews us. Where had we been? Who have we been in contact with? What are their names and numbers? Our family visiting from the UK gets told not to leave the country. That night our toddler son becomes violently ill and cannot stop throwing up. He can’t keep the wackadoodle antibiotic down that they gave us. I’m completely loosing my mind and wondering if any of us will make it out alive!!

    The following morning the hospital calls. It seems Jude’s lab work had been compromised. He never had bacterial meningitis he had a mild case of strep throat which he picked up from his visiting cousin. However, our toddler son picked up the norovirus (the horrible god awful violent puking sickness that lasts for three days) when we took Jude into the ER the first time. Joyfully (said with all the sarcasm in the world) we all came down with that a few days later.

    Fun with bacteria!!!

    Like

    1. j&m says:

      Well shoot! I’m annoyed they won’t give you a vest. What’s the deal? I bet you could contact the company directly and ask…if it were me I’d keep pushing, and that’s why I have so few friends. Annoying, demanding, this one here. However, my kid does have a wee vest. Seriously, I wonder why they do that – tell us 2 years. In the hospital, I saw the phys therapy using a vest on him at 2 months – that’s where I got the idea…I want one! Eli just hated getting the manual lung pounding. As soon as I asked the coordinator turned up with the right paperwork and it all happened quickly.

      Separately, your story is insane. Can I make a whole post out of it?!?! Would you mind? It’s totally a cautionary tale…flippin ERs and Doc in boxes (urgent care) don’t seem to know jack about CF (well, based on your experience, and my gut feeling! OK, I based it on the fact that one time, I called my kids’ regular pediatrician’s answering service and got a call back from a random nurse, who acted very alarmed my child was coughing at all, and told me to take him to the ER, which I thought to be the worst advice in the world, since ERs are full of germs and I wasn’t overall THAT concerned about his cough…just seeking advice for possibly next day or coming days. The nurse was like “I’m very concerned because he is coughing and has CF. Very concerned.” It wasn’t useful, just panic-inducing to a new CF mom. I called an on-call pediatric lung doc instead, who gave me a ring back in about 20 minutes and told me to hang tight until he could be seen).

      Like

      1. wanderlust42 says:

        I don’t know what’s up with them and the vest thing. It’s crazy especially since he’s getting the start of a hernia from struggling against us trying to the the percussions. We even brought that up to the doctor last visit. I’ll just have to push harder I guess. Although my fight is wearing thin the moment. Little one still wants to nurse multiple times at night and I don’t know if its the CF making him hungry or if he’s just used to it. Very tired.

        Feel free to use the ER story. I just started my first blog ever a few days ago and I was thinking about using it at some point myself. It’s a pretty crazy story. I have to say in my experience so far our regular pediatrician is absolutely useless when it comes to CF and even as good as our CF team is only one of the doctors and our nutritionist seem to be the only ones that have even the slightest clue as to what they are talking about. We’ve had completely conflicting advice given by different people on the same visit. That’s happened multiple times. I just read as much as I can and try to stay on top of it all.

        Like

      2. j&m says:

        Can you switch doctors? I don’t know the full scenario but it sounds like they are not working with you to make the care work for your family. An hour of PT is hard for busy families. I only had to do the percussions for two months, and Eli would scream the majority of the time. It was stressful. I know my doctor likes manual PT better — and I surely want to learn all about it and especially do a little extra when he’s sick, in addition to his vest. When Eli was sick, when I pounded on a certain part of his lung, he hacked. Still, the vest is a dream. Don’t feel bad about insisting, getting another opinion or contacting the company to find out what the deal is and what you can do to get it on your own. It’s bullocks to deny it.

        Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: