Capt Snuggles and the Terrible, Horrible, No Good, Very Bad Day

This blog has become hard work.  Not hard work as in I can’t think of anything to  write. That’s not a problem. It’s hard work because it seems like we’re in constant crisis mode and ALL my posts have the feel of a report straight out of war-torn Bosnia. If I were a journalist, I would win a Pulitzer.  I report it all, the good and the not-so-good.

Capt Snuggles has plenty of not-so-good.

Just when I think I have described the Worst. Day. EVER. Along comes the next day and I start all over again. And YOU, dear readers. You keep coming back to check on us, to make sure we’re doing okay. For that I am grateful.

Because Tuesday, may just  have won the prize for Worst. Day. EVER.

Sunday was the bleeding and the 2 blood transfusions, Monday was the PICC infection. Tuesday brought more bleeding. A LOT of bleeding. Hemoglobin of  11.5 Monday afternoon. Hemoglobin of 6, a mere 24 hours later. His afternoon dressing change was visually challenging. There was a lot of blood – now I’m not a squeamish sort, but watching your child bleed uncontrollably puts even my mettle to the test. He received the equivalent of not 1, not 2, but 3 blood transfusions plus platelets, by Tuesday night. That is a lot of blood.

Oh, but that’s not ALL the tricky little boy did, oh no. By late Tuesday afternoon he was also showing signs of sepsis, low blood pressure, low heart rate, abnormal blood work. We knew he had an infection in the PICC, but we didn’t yet know the ‘species.’ Initial diagnosis indicated strep. They switched to vancomycin while we waited for further identification.

They had taken him off vanc because he had developed vancomycin resistant enterococcus, so he’s been on an antibiotic called linezolid. They were hopeful he could be switched back to the vanc long enough to take care of the new bug, not aggravate the old bug and then go back to his current regimen.

But this is David we’re talking about here. He does things his own way. Can the Worse. Day. EVER. be longer than 24 hours? I vote yes.

Because David has no concept of time.

Daily dressing change was done @3pm. By midnight the dressings were saturated with blood, so I got to participate in 2 dressing changes. Not much fun the first time around, even less fun in the middle of the night.

Overall, his skin has healed significantly, but I noticed new areas of redness and the ever so slight speckling of new rash. New areas as in, there was rash, it’s actively healing and now the rash is coming back into those areas of healing skin. The Chaperone said his skin looks angry. Everyone agreed with this assessment.

The BMT doctors are not happy with this development. Neither am I. They decide to give another dose of campath.

His sedation continues to be an ongoing problem. No more propofol holidays for him, not with that fat-loving fungus, so while they still use it sparingly during the dressing changes, he can’t have it for more than a couple of hours at a time.

Heartbreaking is watching your child struggle. Open his eyes, thrash against the hands holding him down and cry. Yes, he cries over the breathing machine and it’s the most heartbreaking sound I’ve ever heard.

The pain management/sedation is three-fold.  There are pain meds and there are sedation meds and then there are paralytics. Rocuronium or “Roc” does just that – it paralyzes the muscles, unfortunately, you can still feel pain, so if the pain is not well controlled, the Roc can be torture. It is used sparingly for this reason.

Would you want to be paralyzed but still in pain and conscious of what’s going on?  Yeah, me neither.

But David being the enigma that he is, seems to really like the “Roc” his heart-rate never wavers, his blood pressures remain good – both indicators of pain. So we go with what works.

And he seems to be comfortable. What should last less than an hour, keeps him peaceful for almost 3. No additional PRN’s needed. 

*thank you*

After 3 hours of useless sleep for me, it’s again time for morning rounds. They still haven’t identified the new bacteria, so someone is assigned to track it down. The massive bleeding is obviously still a concern. So they decide to contact Shriner’s again. Maybe they can help. All the team members agree to be present at today’s dressing change.

*sigh*

I chant my new mantra Every Damn Day Just Do It, as the doctors from Infectious Disease sashay through the door.

Are you ready for this? It’s Not strep.

It’s Enterococcus.

Which means the vancomycin they switched him to is not doing a thing. Which means since he was on the linezolid when the bacteria grew, it is useless to fight it. We are quickly running out of antibiotics. Daptomycin is our drug of choice for the next 2 weeks to treat. Of course, it has it’s own set of potential side effects, such as muscle deterioration. So a certain blood factor has to be  monitored along with any signs of muscle weakness.

*sigh*

The Shriner’s doctor’s showed up @2:30pm. They soaked his torso with a lidocaine/epinephrine solution. Then they suggested another product that looks like a piece of felt, but actually has silver chloride in it. We wet it and put it on his belly and sides since they were the only areas still actively bleeding. The difference between that and what we’re doing is that it can stay on for 7 days. It’s supposed to turn hard like a cast, allowing the skin to heal from the inside out. The downside is that because of the silver, it stains the skin black. Small issue if it helps heal.

*whew*

That about sums up a 36 hour Worse. Day. EVER. 

I think I might actually trudge over to the RMH house and succumb to my exhaustion.

You better be good while I’m gone, Capt Snuggles.

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Categories: Life | Tags: , , , , , , , , , , | 10 Comments

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10 thoughts on “Capt Snuggles and the Terrible, Horrible, No Good, Very Bad Day

  1. Margie

    I am speechless after reading this, my heart just aches for you and your sweet boy. Yall are constantly in my thoughts now.

  2. Ugh that is awful! I am so sorry Capt Snuggles (and you) have had such a bad 36 hours. Hoping the next 36 provide more reasons to be hopefuly!

  3. me too (speechless that is)! Yep, I think your correct in your 24 hour very bad day assessment…I hope you were successful in your attempt to sleep. Take care…Amy

  4. Oh i am so sorry…Hugs .
    Hope it gets better.
    Frenchy

  5. I am in tears everytime I read your articles, it doesn’t feel right to “like” your articles but it is the only way I feel I can show my support…

  6. Oh, wow. I haven’t come across your blog before. Such an incredible mumma you are. I’ll be following every word from now on.

    Every damn day, just do it. Damn straight. Hang on in there, you and Capt Snuggles. Thinking of you both xoxox

  7. Sairah

    Deep SIGH, I’m so sorry for you the tough day you and David had!! Get some rest friend!! Thinking of you guys!!!

    (((HUGS))),
    Sairah

  8. I don’t know what to say. Thinking of you both and closing my eyes and wishing David well thoughts, well thoughts…

    Veronica

  9. Patty

    There are no words! Praying that you have had a chance to get some rest and that there are some positive things happening real soon. I wish I was close by and could sit with David while you got some rest. I always rested better when I knew someone was there with my son. Hoping you get to see the rest of your family again soon too!

    Patty

  10. Thinking of you all.

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