The Who, What, How and Why of My Mystery Illness

So Baby Christopher was born on 4/25, and the delivery was beautiful.

Fast, no tearing, no pain thanks be to epidurals) and a euphoric high welcoming this little boy that we'd hoped and planned for so very much.

Nine days later, I woke up after having brought him to bed to nurse, and in so doing I had fallen asleep in a weird position. I had a pain in my shoulder akin to "pinching a nerve," Yes, chiropractors everywhere cringe when we say that because we usually have not truly pinched a nerve, rather have a subluxation that needs adjusted, but go with me here) and I attributed it to bad sleeping posture and the hormone known as relaxin, as I'd just given birth.

Later that night, we went to a music program the kids had at school and the pain got worse. Like an 18 on the 1-10 pain scale.

At home, I called a friend from church who is a massage therapist and asked her to come work on me.

Also, I'd spiked a fever of 101.

I figured it was an inflammation response to the muscle/nerve issue I had going on.

For the following 6 days, I experienced pain/fever on and off. If I dosed up on ibuprofen, the pain was held at bay and the fever was gone.

So guess what I did? I mean I have three kids 8 and under and one is a newborn? Shit's gotta get done!

Until Monday, May 11th. I woke in the middle of the night in excruciating pain. I hopped in the shower and took a shower so hot that when I went to turn the heat up more, I found I was already at the max. I called my chiropractor and set up an appointment to get in that morning. I also called upon my church to see if someone could take me to the appointment as I was hurting so badly I didn't feel as if I could take Christopher in and out of the carseat.

Went to the chiro - pain, pain, pain. He was concerned about the fever and thought perhaps my gallbladder was going septic. But when he pushed on it there was no tenderness. He set up a few appointments for me as he didn't think it would be resolved all that quickly.

Went home, still lots of pain. 

Called my dear friend Sarah (my BFF who also happens to be an RN) and asked her if she minded sitting with me and the baby because I was in so much pain. She came right over. I napped and apparently, my breathing continued to grow more shallow as time went on. Now the shoulder pain radiated out and was generalized chest pain. As my temp went up, so did Sarah's anxiety. She really wanted me to see an MD, not a chiro. She told me she worried that I had a blood clot in my lung, fluid build-up, or something else. These all sounded way too dramatic for me and I tried to dismiss her.

Also, of note: Seth's health insurance was to renew on May 1 at a horrible new premium rate ($900/month - like a second mortgage!) with higher deductibles ($3,000/person), and lowered coinsurance (60%/40%). We had opted out, with coverage ending on 4/30; however, we'd worked with a broker to get an individual health plan for the family and it would be effective 5/15.

Sarah's hubby bought dinner and brought it to our house. When Seth got home, Sarah insisted that I go to urgent care. We talked about it and decided that urgent care w/o insurance was only like $25 more than urgent care w/insurance so Seth and Sarah's hubs stayed with the kids while Sarah and I rode over to urgent care.

I went downhill pretty quickly in the meantime. Feverish, in acute pain, and just out of it. She wheel-chaired me into urgent care and I somehow signed my name on the paperwork. Next thing I know, Sarah and the nurse checking me out are concerned, talking furiously over me, and then I'm told that I am going to be transported to the hospital via ambulance because I was not stable enough to go with someone else.

Sarah called Seth and let him know what was up. Sarah and her husband took our oldest kids to their house and had them spend the night. Then Seth and Christopher came and met me in the ER. They actually beat the ambulance with me to the hospital – go figure.

The ER doc checking me out told me I had "junk in my lungs" and said he suspected I had pneumonia. At this point, I argued with him saying that I'd had pneumonia 5 years ago and I wasn't coughing crap up nor had I been SO lethargic like the time before so it couldn't possibly be the same.

I mean, just the day before my brother and I had gone to see Garrison Keillor in Boulder, and before that, had gone to church and done all the activities that kept us busy were all being done.

The chest x-ray proved me wrong. It showed some pneumonia in my right lung, but even more so, tons of fluid on the outside of my right lung.

That's when the questions about the birth began:

"Did you have a C-section?"

No.

"Did you vomit while laboring

No....not this time - with Kelsey, yes.

Hmmmm.......

Enter a new doc, the pulmonologist, who comes in and says we need to do a CT scan to determine if the fluid is just fluid or if it has started to solidify into "pockets," because fluid could be dealt with via chest tube whereas the pockets might need surgery.

Also new to the scene, IV team, because I am an incredibly hard stick. Even with an ultrasound guiding them it was difficult to get the IV[s] into me as needed. Lemme tell you how fun it is to have folks digging in your veins repeatedly...oh wait, it's not fun. AT ALL.

It was here that we were told I had to pump and dump for 24 hours because the pharmacy consult said the jury was still out on the safety of nursing with contrast dye in the system. So Seth at one point left to go get my pump and formula for the baby.

Went and did the CT scan and it showed mostly fluid with a pocket or two, but the pulmonologist thought a chest tube would be sufficient. So they began to insert one in me. They shoot you up with lidocaine, like at the dentist, but I could still feel WAY MORE than I was able to tolerate, and I just cried, "Owie, owie, owie," into the pillow until they were done. It was horrible and torturous. Immediately upon insertion of the tube, however, they drained a soda-pop worth of fluid off of my lungs, and it continued to drain still more over the next two days. As the fluid drained some of the pain decreased with the release of pressure.

The next morning (day 2), I had to go do a chest x-ray for the pulmonologist team to determine whether the chest tube was draining everything properly. This chest x-ray revealed that things were starting to gel up in the fluid, at this point called pleural effusions, and so the doctor ordered tPA to be injected into the chest tube.

Now, you can click the link to learn the real mechanisms behind tPA, or just trust me when I give you the tPA for Dummies explanation and say it works on human tissue in a manner comparable to how Liquid Plumr works on hair/grease clogs by eating away at the chunks.

Yum.

You’re welcome.

This caused a lot of pain as it only increased the pressure inside my chest cavity instead of decreasing it. After an hour, I could take no more and they began draining again - this time I could see chunks of stuff coming down the tube with the fluid. Yum.

My MIL and FIL came up to help with the kids and my mom was notified. As we approached the 24 hour pump and dump marker I was ready to nurse Christopher, who'd spent the night at home with Seth trying formula and failing, miserably. We put out an e-mail to our church and a shift rotation was created where people would stay in my room with me and the baby to help me nurse him and/or soothe him when he was awake and I needed to rest. This was vital as I couldn't just up and get out of bed since I was hooked up to IV's, the chest tube, and oxygen. This also allowed Seth the ability to go home and get some rest at night. MIL and FIL helped get the kids to school each morning and then came to the hospital to help with the baby and reprieve the church friends from their shifts.

Day 3 - Another chest x-ray first thing in the morning. Later, the pulmonologist came up to explain that the chest x-ray showed my condition was worsening. Despite the tPA the day before, the effusions were beginning to solidify into pus and tissue, a condition known as empyema. The only solution was to do surgery. The surgeon would come and talk to me at some point that day. In the meantime I asked if nursing could still be feasible - the baby had done miserably on formula; he'd not eaten it well, it gave him terribly painful gas, and he had a raging diaper rash from it. 

Initially they said no.

My mom came up at hearing the news that I needed surgery.

Later a CNA came in to give me a sponge bath and asked how I was doing when I completely fell apart. I didn't want to have to give up nursing my baby, I didn't want to hurt him again, and wasn't the stress of this environment enough? She got me calmed down and said that moms who have c-sections, also surgery she pointed out, nurse all the time and that she thought a lactation consult would help ease my mind. In the meantime, I pumped to ensure enough milk would be available while I was under and in surgery.

The surgeon didn't come until 8:00pm (making it an extremely long day). When he came he told me that the empyema was about the consistency of jello and they were going to make two small incisions and arthroscopically suck it all out. Surgery would be tomorrow at 7:00a.m. and recovery time would be 6-7 days.

Day 4 - Surgery. I remember the prep for the surgery, the anesthesia and everything until they put a mask on my face. I was scared. I've always had a phobia about being cut open. After that I am unclear. I do not recall coming to. I do know that when I was coherent they told me that the 1 hour surgery had turned into a 3 hour surgery because the "jello" had actually gotten even thicker, more like tissue and couldn't be sucked out. Rather they had to open my chest cavity, spread my ribs, pull my lungs out and carve out all that gunk, then re-adhere and inflate my lungs before stapling me back together.

Hey, Humpty Dumpty – wanna compare notes? Or scars?

After surgery I had to cough a lot. The coughing was like white hot pain as it expelled blood clots and mucous deep within my lungs. The nurses told me to hit the pain med pump a few times to get ahead of the pain when I felt a clot cough coming on. This still didn't do much for pain management.
A new chest tube had been inserted with 2 tubes inside my chest during the surgery to drain out fluid that was residual from the surgery. It was pink and bloody-ish.

Day 5 - this was the scary middle of the night fever spike that I mentioned in my last post.

The days began to blur into one another at this point. I know that on Day 7, we got to go outside for lunch at the hospital. On Day 8 (Monday the 18th) I got my chest tubes out - the first one came out easily enough but the second one hurt. So many cringeworthy, painful and scary moments.

They began talking about getting the PICC line in so I could go home and get IV antibiotics through it at home. But, as I told you before, that didn't go so well - another traumatic episode - and I think because of all that digging, my temps/white blood cell count went up and they kept me a day longer than planned. Second attempt was made and was successful, not to mention prompt.

The cultures that they ran on the fluid, tissues, etc. showed that the bug that had caused all this damage was an anaerobic bacteria that typically resides in the human mouth.

This is why they were asking if I'd vomited during the delivery, as perhaps I'd aspirated something and that's how the mouth bug got into my lungs.

And finally, as I thought about it, I remembered the Wednesday night before I delivered Christopher, we'd eaten at Chili's and I'd had contractions as well as had thrown up my dinner.

Perhaps?

I don't remember choking on my vomit there, but who knows? The timing plays out per the surgeon.

Sort of....he said typically the bug incubates for a week before symptoms. 

The time from my Chili's upchuck to Cinco de Mayo was almost 2 wks before that initial shoulder pain showed up. But it could have been that I was developing the pneumonia prior to the shoulder pain, as that was indicative of the fluid creating pressure.

All I know is that my lung could have collapsed and I would have gone septic had I not made it in when I did - Sarah saved my life.

And scary as it was, God blessed us with the love and support of our church family, neighbors and immediate family.

Eleven nights of people working 4 four-hour shifts through the night to make sure I could keep breastfeeding him and get the rest that I desperately needed.

Countless cards, prayers, and now financial assistance. Not only did we wrack up medical debt up to our eyeballs, but Seth wasn't working much of the time that I was in the hospital - and that was unpaid leave - thus our regular bills are behind as well. I've been negotiating with our creditors (gone are the days of avoiding collection calls - going to face this situation head-on) and we've already received a sizeable donation from an anonymous donor at our church.

Not to mention that they are coming to the house and doing chores, cooking, and caring for me and the baby as I am on weight lifting restrictions and still need plenty of sleep to fully recuperate.

So that's the 411 on the physical info. The next few posts are likely to center on the faith and emotional aspects of this journey.