Another Tuesday PM

These redundant titles are getting old! Thoracic surgeons came by and consented Tom for everything in the world, and they will do the biopsy Wednesday - woohoo!! The actual procedure involves cutting just above his sternum and snaking a camera and instruments behind his sternum to remove one lymph node and test the heck out of it. It could be an out-pt procedure. Maybe now we can start treating the problem, not just making it up as we go along. Don't get me wrong - I don't expect answers tomorrow, but at least we are finally on the hunt for a cause, not just symptom management. He isn't coughing as much today, but is sleeping way more. Hmmm... I am hoping we also get to come home tomorrow. I haven't seen my kids since Monday morning, and I kinda miss them!

Another Monday PM

Tom coughed and puked for 6 hrs Sun night. I gave him the option of the ER or a doc in the daylight. He opted to wait until daylight, which was fine. He is at Barnes again. The pulm Fellow that has been following us seemed a little annoyed that I wanted him admitted, but there is only so much I can take care of and watch him go through. I am sick, Colby has ear infections, and Tom was just more than I could deal with. We think one of the lymph nodes is sitting on a nerve to stimulate the cough reflex. We didn't see the Thoracic surgeons today, so I don't know if anything will really happen tomorrow. The other option is to deal with Interventional Pulmonology - think of IV contrast and real-time chest x-rays or CT scan. They can biopsy a lymph node that way - less invasive, but nobody seems thrilled with that option. The bottom line is that there is no treatment until we figure out what we're treating, and we don't know that until after a biopsy. Then let's get the biopsy done. This isn't rocket science!! He has lost 25 lbs in 2 weeks, he's not eating, he's not sleeping, he has gone through all of his sick leave and a good chunk of vacation time, he's depressed that he can't do simple things like read a book to Colby without coughing and getting out of breath, and the goofball is worried about money. I love him that he's worried about us, but spend that energy elsewhere!

Ok, I have vented for all the world to hear, and now I'm going to bed - right after I enjoy my antibiotics. Life is really not that bad, but I'm sleep-deprived so it seems like it is. The Son always rises, right, Sheila?

Life

Ho hum, the end of the week looks a lot like the beginning. Tom is still coughing, spiking fevers now and then, back to twice a day lasix - once a day didn't work out so well, tired, no energy and very frustrated. He goes to work, comes home and tries to sleep, gets up for an hour or so to help me get Evan off to school, goes back to bed and gets up in time to get ready for work. He's tired of that routine. He doesn't have a ton of patience right now with the kids, so as long as he can take care of himself, we are going places and doing things and letting him sleep. It's not great, but it works for the moment. My thought for the week is that we are finding a new kind of normal... not one I would choose, but we'll deal with it. My boss let me drop all the shifts I had picked up to work during the week, so I am back to just the weekends and am available for dr appts and whatever needs to be done (gee, raising kids?). Typing of that, the pulm doc set up an appt with the thoracic surgeons for a week from Tuesday, and the pulm appt on Wednesday.

Evan got some stress management today, and he's looking forward to Monsters vs. Aliens later tonight. Colby, I dunno about him. He has told me two days this week that he misses me. "Where am I going, Colby?"
"I'll miss you when you die."
"I am not planning on dying until you are a very old man and I am an even older mommy." Maybe he's picking up on the stress level more than I realize, since he's home all day. He has also had a lovely snotty nose, cough-till-you-puke, breathing treatments and just don't feel good week.

There's not too much on the calendar for the weekend, and none of it "mandatory," so here's to a rainy, cold outside 2 hour nap kind of weekend.

Tom, Chapter 3

We got bronch biopsy results back today. More good but less than helpful news. The lung tissue was negative for cancer cells. The microbiology was no growth to date. If it was going to grow a superbug, it would have by now. Next step, you ask? Our original consult date, April 8, is now our follow-up visit, and at some point Tom will have to have at least 1 of the lymph nodes removed through his chest wall. But this is Barnes, so it won't be next week. We'll be lucky if it's next month. We have to see the lung guys first, then see the thoracic surgeons, then schedule the OR time. And I'd really like them to take out all 3, but the lung Fellow that we've been working with didn't think they would do that, just one. And a CT scan in 6 months to figure out the right lower lobe thing and make sure it's not growing. If it's the same, it's probably scar tissue. If it's larger, well, God did give him 2 lungs, right?

Tom did go back to work this evening, with his stylish support hose on. That was a 2 person job, and I remember why I don't wear pantyhose! He's feeling decent, but no energy, legs are still swelling if he's not very careful about how he spends his time (horizontal is good!), and coughing. He's got some bumps on his arms that I can't figure out, either. One more issue on the list for the pulm docs, I guess. We sent my mom back home for a few weeks until spring break, when I'll make her be a tourist and see the sights with the kids.

Evan finished Upward basketball this week, with the closing ceremony tonight. He's so excited about his new lunchbox, dang it I have to make him a lunch for tomorrow. He had a good time and got some exercise, which was my goal for him. Now it's baseball sign-up time - coach pitch instead of t-ball, woohoo!

Thursday PM

HOME!! The bronch went well - Tom was highly medicated and doesn't remember it, which is exactly what I wanted to happen. My coworkers are awesome! The rapid tests they did on his lung tissue came back negative for cancer, but that doesn't mean much, just gotta wait until the real stuff comes back for more definitive answers. We'll know tomorrow when our follow-up appt is. The gut feeling is that the legs and lungs were 2 different things - 1 didn't cause the other. We just kinda happened upon the lung nodules while trying to fix the leg swelling. Nobody at Barnes really thinks it was cellulitis, but nobody knows why any of it happened. There really are no answers. We know what it isn't, but don't know what it is. Meanwhile, take some lasix and pee. His BP is down with the fluid and swelling gone. He still has the cough, which is what really bothers him the most, and the docs care about (or perhaps are the least able to fix) the least. He spiked a low grade fever again tonight - could just be the trauma of the bronch and increeased activity of coming home. Waiting, waiting, waiting for test results.

It will be good to take my kid to school in the morning. I need a routine again.

Wednesday PM

Today was not as planned, although nothing adverse happened. Tom had the CT scan early this morning, which didn't show anything we didn't already know. Lymph nodes and the RLL thing. Nothing to explain the legs. That's a good thing. The pulm guys finally came today since the medicine docs had run out of ideas. They couldn't get the bronch & biopsy done today, but will tomorrow morning. Pulm function test were ordered, but not done yet. Those can be done outpt, so they won't hold up the bronch or discharge tomorrow. He is still getting lasix 2x day and his legs are looking much better, and we went for 2 longer walks to the main floor today. He's not sleeping well, but he is 11 floors above the hospital ambulance bay, so he gets to listen to those as well as the helicopter landing. It's a hospital, not the Hilton!

My mom is taking Colby to the aquarium tomorrow, so it'll be a fun outing. I think at least 1 kid will go to his buddy's hockey game tomorrow night. Life is ok for them. Tom is nervous about the bronch, but I've tried to minimize it for him. I'm just glad to be home a little earlier and go to bed early. Sitting and waiting sure wears me out.

Tuesday PM

It is a day of mixed blessings. Tom does not have anything wrong with his heart, says the echo at BJC. I'm still waiting for results from the Cornfield hospital. Tom does not have any blood clots in his legs. Tom has lost 10 lbs overnight with the help of lasix. Pee, Tom, pee! Tom's feet are still swollen, but better looking. It leads us to why his legs are not fluid-shifting. The plan for late tonight or tomorrow is a CT of chest, abdomen and pelvis to see if there is something in his lower belly impinging on the vena cava returning blood/ fluid back from his legs. That was not something that we had thought of. Tomorrow is also bronch day. The ones I saw as a student were awful to watch, and I am trying not to really tell him anything, hoping he just won't remember it. Literally, it's a garden hose with a video camera through your mouth or nose and into your lungs, gagging and coughing all the way. He will be medicated (highly I hope!) but it is still awful! Hopefully, it will also be discharge day. He was moved to a regular inpt room today instead of the admitting holding area he was in, and has a roommate. I am grossed out by them sharing a bathroom. Tom is highly picky of the bathroom design, and the tp roll is literally in your lap - who designed this? Not a patient!

Mental health check? We are both tired and easily tearful but generally ok, and very grateful to the locals and grandparents who have stepped in to raise our kids and run our lives this week. Sorry Mrs. H if my kid thinks it's all a party this week. To him it is, and I'd like it to stay that way. I was home tonight just in time to sit with them, and couldn't kiss and hug them enough.

Monday PM

As advertised, Tom was admitted to Barnes for testing. He doesn't feel any worse (or better) at this point physically, but we both feel things are or will be getting done. Today it was just a chest xray and ekg - nothing exciting. He is hoping to be home tomorrow, but I'm certain he won't be. Things won't happen that fast. The family is tag-teaming the kids and they'll be back at home tomorrow for any playdates offered. Evan was excited to ride the bus today - wondered why I felt the need to get him out of class to tell him we were going to the hospital. I love the innocence! Thank you to my friends and church family for the calls and prayers, and playdate offers.

Tom, Chapter 2

Dang, I love it when things happen!

I gave my SIL a copy of our CT scan yesterday when the family came over for cake and ice cream. She is also an RRT at BJC - how I ended up marrying her brother, and much higher up on the food chain than I am. She tracked down Dr. Russell, and Tom will be a direct admit later today. That's a much quicker way to get tests done than out-patient! Woohoo! Both of our heads are spinning, but I am thrilled too. He's just plain scared.

Tom, Chapter 1 Part 2

Dang doctors. I called the WU office and left a nurse message, which they promised to return by the end of the day. A friend at work called the doc directly, but she was in the middle of something and just said she'd look at it later. I left another nurse message. And it's now 5:20 on a Friday afternoon. I don't want a miracle or even an appointment tomorrow. I'll settle for the month of March. At this point nobody is treating my husband. His cellulitis is very slowly getting better, but there's still this lung/ heart thing. How would the lady working at Casey's making $7 an hour with only half her teeth get medical things done? Oh wait, she goes to the ER and gets admitted. Maybe we'll try that...

Tom, Chapter 1

Get comfy, it's a long post. It's been a heck of a ride this week.

Ten or so days ago, Tom complained he didn't feel good - achey, fever, nothing huge and obvious, just yucky. Two days later, he told me his feet were swollen. Last Friday, he was short of breath walking up the stairs and really felt like crap. Well, it's midnight. I made an appt for Saturday morning. The doc called it cellulitis in both legs, gave him an antibiotic, drew blood for good measure and a chest x-ray. His breathing was worse to me as the weekend went on, so we were back in the office Monday morning. Swollen legs, short of breath, wheezing, dry persistent cough, blood pressure up. A week ago he was overweight but healthy outside of sleep apnea. This week, it's an effort to go up stairs from out basement. The visit resulted in more bloodwork, CT scan, echo, and stress test appointments, and another sleep study. They called us back emergently based on the bloodwork to do a CT scan on Monday, looking for a blood clot in his lungs. What they found is 3 enlarged lymph nodes behind his sternum and something in his right lower lobe. The chest xray showed an enlarged heart. Since then, we've done the echo - no results until at least Monday. I called Wash U pulmonologists for an appt, knowing that would take weeks to months to get in. Our doc set up an appt with the local pulmonologist who sees us for sleep apnea. We saw him today. He didn't seem to be totally together with everything. He was discussing a biopsy of the lymph nodes, and I mentioned that we had this WU appt for April. At that point we were summarily dismissed. I think it pissed him off that we were already working on a 2nd opinion. Apparently, he'll see us for OSA, but I won't let him touch us for anything else. I would be a fool to not utilize the resources in my own backyard - top 10 hospital 38 miles away, with physicians I know and (mostly) like.

As for the CT results, a few of the possibilities are lymphoma, infection, sarcoidosis, lung cancer ?? We don't know anything, and aren't getting a ton of help from anyone we doctor with locally, and Tom still has all the other stuff going on. He is going to work in between appts. He figures it's a desk job - as long as he can walk from the parking lot in, he can feel crummy at work. His job doesn't offer a lot of sick/ vacation time, so he'll work as much as he can.

Upcoming is the stress test next week and the WU appt (a pulmonologist that I know and really like to work with) in early April. I imagine cardiology folks from WU will also get involved if stuff shows up on the echo/ stress tests.

I am trying to tell Evan on a need to know basis and protect him from garbage that he doesn't need to hear, but he's a wise and sensitive soul, too smart for his own good sometimes. Colby's oblivious - the aunts and g'ma & papaw have tag-teamed him this week, so his life is great.

In the midst, it's Evan's birthday on Sunday, so we have to have a little party. That cannot be overlooked!

Colby's Comments

At 0730, before a glass of milk... Mommy, whenit dawk ouside, can I have a bedtime nack?
Sure, you can have a bedtime snack, but can you tell me what you want for breakfast first?

We had a sensory playdate at Parents As Teachers this morning. That means we got messy at school - all the things we don't let them do at home - finger paint, shaving cream on the table, making pudding in a ziplock bag, sand and rice tables. He put his hand in the shaving cream once - Mommy wash. He put one finger in the finger paint - Mommy wash. But the floor walk - car mats, door mats, bubble wrap, sticky mat, carpet, piano - that was a hit for him. And the homemade playdough. A fun morning.

It's 80 here - spring fever. So glad it was a 1/2 day! I am feeling the need to dig and plant something, and clean out the garage and closets. Beware, Tom! The Christmas tree that we haven't put up in about 6 years is in the front yard, waiting for trash day Wednesday.