Day 236 - Feeling a little better

After yesterday's update, I'm glad to say that today was uneventful.  I was able to listen (and ask questions) during rounds this morning, and it sounds like things are going as well as can be expected.

The infection is totally under control.  We have only had the one positive blood culture from the day we were admitted, so we can assume the antibiotics have done their thing and he's good on that front.  He seems to be feeling somewhat better from the flu, so it's hopeful that he's starting to get over it.  In addition, he's had a transfusion of platelets, which has brought his platelet count up to 37... still lower than we would like, but higher than it was.

We also got a little bit of news as far as the blood clot.  It seems that the anti-coagulant that we use (Arixtra), that is designed to break up any clots that he develops, becomes practically useless when combined with one of his chemo drugs.  This totally explains why he developed a clot while on medication to prevent clots.  It also gave the team more information to change his regiment.  He tends to only 'throw clots' when his body is under stress, such as when he develops the flu or an infection.  Under normal circumstances, it's not a big deal.  In fact, we stopped his Arixtra a few days before his spinal tap, to make sure that he didn't have any excessive bleeding.  It's possible that between the chemo drug, and stopping his Arixtra, and developing the flu, we just set him up for this clot.

The good news is that now we know, so we can be proactive in the future.  We may consider dropping this specific chemo drug from his plan.  Or, we may make sure that we do not stop his medication if he has any flu-like symptoms.  Or, we may go with a different medication, that does not have these issues.  No matter what choice we go with, I really appreciate all the options and the effort of our team.  They all seem really positive, which helps!

I know that he looks.. really bad.  I'm trying to come up with a description that explains the excessive facial swelling, but I'm not sure what to say.  The good side is that he feels better.  He was able to sit up in bed and watch movies with Patrick and play with toys today.  Looking back at old pictures, this reminds me of the first few weeks.  So, I know that it will get better.

Thank you all for the continued prayers and good thoughts!!

Comments

  1. Lois HillDecember 12, 2017 at 8:52 PM

    yes, he does look like a fat little guy --he he. It looks like the photo was altered with a larger face than the body should have!!! And yes, I remember pictures of him like that earlier, so he will get back to the normal handsome face! Prayers answered again that he is getting better and the medical team (and you folks) are learning what works for "Ryan's way" :) WOW what journey. but isn't technology awesome that you can be there for the consultations and be hundreds of miles away :) :) LUV U all

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