The Good, the Bad and the Purple

I have become the worst kind of superstitious. I’ve always been a bit weary of saying things out-loud. If I am boastful of something good, will it fade away? If I utter the bad into existence will it manifest in spades?

It’s been 2 days worth of not-so-bad. While not exactly progress, he hasn’t back-slided, either. I’m leery to say these things out loud, to express the hope that we might actually be one step on the path to recovery.

As far as they can tell, the lovely purple color he turned is a reaction to the daptomycin. Very rare side effect, but a known side effect nonetheless.  Clarification, OUR doctors didn’t know about it , but someone finally confirmed it to be a known side effect.  He now turns purple on demand whenever he receives the daptomycin infusions. Violet Beauregarde would be proud. Thankfully, it’s only once per day.

His dressing changes are slowly becoming less traumatic. While his belly and chest still have areas of bleeding and rawness, his arm and legs look wonderful. His feet and hands look amazing. Again, let me clarify. While he’s not going to win any modeling contests right now, he no longer looks like the Thing in these areas.  I might even be able to snap a photo or two of his pretty pink toes in the upcoming days.

I brought up the subject of extubation today and the Fellow thought I was crazy.  I want it included in discussions, though. I want tangible goals set, so we don’t lose sight of the fact that he is improving, however slowly. He was intubated because of the severe pain associated with the GVHD. With the GVHD resolving and his skin healing, he should have less pain and be heading towards extubation.

(I also realize, nothing is this cut and dry. I know he has lots of other issues, such as whether or not his lungs are ready,  but it all needs to be discussed.)

Part of the problem also lies with the drugs. He needs to be sedated while he’s intubated because he could obviously hurt himself otherwise. He needs pain meds because he still has some pain/discomfort from the GVHD.  I firmly believe that at this point, the sedation is needed more because he’s intubated rather than any major pain issues. They’ve thrown so many narcotics at him , he’s going to need drug rehab for several months just to come off all these meds.

His lymphocytes were elevated this morning at 8%. In the past, the BMT doctor’s would check a blood sample and check for the T-cells. We have a new BMT Attending this week that wants a different blood test, one that tells us the percentage of donor cells vs. his own cells. This test is difficult to get – it needs to be sent out of the hospital and it takes several days to get a result. So while I agree with needing this test, I’m concerned the T-cells could be multiplying and wrecking havoc on his body while we’re waiting for results.

So we’re back to the waiting game.

At least we’ll be busy while we wait. Wednesday is Jonathan’s 6th birthday. He spent his first 2 weeks of life, which included his first Christmas, in this hospital. AND He also spent his first birthday here, coming home just in time for Christmas.

Zachary’s 3 year liver transplant anniversary is on Christmas Eve. He spent his first Christmas in this hospital, just like David is going to do.  Even among the not-so-good, we have lots to celebrate this week. My sister-in-law was roped into, generously agreed, to spend Christmas break here at the RMH with the boys. So I get to spend time with the boys and still be close to David.

Sounds like my week might just tip the scales in favor of the good.

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Categories: Life | Tags: , , , , , , , | 4 Comments

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4 thoughts on “The Good, the Bad and the Purple

  1. dysfunctionalsupermom

    I always love it when doctor’s look at you like you’re the crazy one. Crazy for being interested in the ongoing care of your children. Crazy for being a determined advocate. Crazy for not just sitting back and letting them have their way with the most treasured parts of your being.
    Keep pushing the issues you know are best for YOUR child.
    I’m glad that there are improvements and answers. Answers are good, no matter how small.
    Glad you get to celebrate some good stuff this week too. I’m looking very forward to pics of pink little piggies. 😀
    Love you girl.

  2. I keep up with how your baby is doing. I feel like a part of the family. I am so happy to hear that the whole family will be close together for the holiday. It is wonderful that you are able to spend all of your time with the baby and family helps pull the rest of it together. Praises to your family for the support.
    As for the discussion of his care, as always, you have to work towards the light of the end of the tunnel. If there isn’t anything to work towards it would confuse people that Capt. Snuggles isn’t getting better. Reaching goals is a part of everyday life and it is appropriate to set goals no matter how far in the future it may happen.
    Your a good mom – I am happy everyone is going to try to be together for the holidays. Enjoy the day with the family and we look forward to hearing many more positive posts. Blessings, Diane

  3. mooney=mc2

    *exhales a bit* Whew, it is so nice to check in and see better news about our Captain Snuggles! I am so glad that you get to spend the holiday with your boys. I bet that the RMH will really make the day super special. Take lots of photos if you can! As always, thinking about you. I think of David and Luca first thing every single morning and I check my blog reader repeatedly each day for news on you and David.

    mindy

  4. Tonya Fisher

    So happy to hear some positive news Amy. I know what you mean about not wanting to say it out loud for fear of jinxing. I feel the same way with Isaiah a lot… but don’t be, shout it from the rooftop Girl! Claim those praises! I wish you and your family a very Merry Christmas and pray for another day of good news for David. His name is so appropriate at this season. 🙂 And as for those Doc’s, keep them honest and looking forward. You are doing awesome and being exactly the Mommy he needs. {HUGS} Love You All!
    Tonya

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