I didn't include enough detail on how this clot was noticed and want to pass this along. Tracy is the one who noticed that Emily's forearm was 3cm larger than the other. I think it's amazing that she noticed it. I would not have. Once she pointed it out, you could tell but still it was a really observant call. Dr. Link was also impressed that we/Tracy noticed and went in to the ER on an observation, rather than Emily presenting symptoms of a clot. In fact one of the reasons he wouldn't think of admitting her is because he knows she has parents who won't forget a dose or give the shot incorrectly. Not sure I mentioned it but with this Emily gets two shots a day for the next few months. Luckily they are subcutaneous and simple to give. Emily is so cute about how good Tracy is at giving shots. "Mommy knows how to give shots because she's a nurse, and she gives the fastest shots of any nurse I know" Quote from Em from tonight.
Once again Emily is so lucky to have a nurse as a Mommy, and Tracy is an amazing Mommy and diagnostician. If the surgery went as planned on Thursday with a clot around the line, things could be worse.
I am now able to see that I am thankful we know about this, we are treating it, and Emily isn't symptomatic.
Tomorrow/technically later this morning, Emily starts her taper of Prednisone as planned. I can't WAIT for that to be gone. She is very bloated and looks sick. She cant fit into her clothes. I think that is also playing on my emotions and how I am feeling about everything right now. Right now Emily is pretty much only able to sit and be read to, watch TV, and she also likes to watch me play the Wii, though we're always talking about her getting back into the game, and I can't wait until she feels like it.
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6 comments:
Wow, 3 cm is not very much. Tracy is truely incredible. That is probably a big reason why the doctors are comfortable having Emily at home. You are always going to worried, but if docs feel medically she can be home it is probably better mentally for Emily to be in the comfort of home and watch you play Wii. That plays such a big role in her battle. You are both amazing parents. -katina
Chris - This latest event is just one more reminder of what great parents Emily has. With Tracy's strong medical background and your strong sense of when to push back, Emily is getting the best support possible.
And how amazing is the human body that it can compensate at least a bit for a complete blockage by rerouting blood to another vein. I had no idea this was possible.
I'm so grateful that you keep us updated like this. We can all share your anxiety in the bad times and your joy in the progress that's being made. I hope it helps to know that there are legions of people rooting for you.
You guys are dealing with so much. We are so sorry to hear about this setback. Hopefully Emily will respond well to the clotting treatment and get back on track soon. As many people have already said-she has amazing parents and is herself just amazing. Sending our love to you guys!
I was so worried to read about the blood clot and then so relieved to hear how Tracy rises to every challenge with her expertise. I am so glad that things have worked out with you there to help, Tracy.
But, Chris, I also totally understand your frustration when the doctors sent Em home and sympathize your refusal to sign the release papers. I think out of all the “hats” you’ll be wearing—be it parent, nurse, etc—the one that stinks a big one is the advocator hat. On top of everything else on your plate, why should a parent have to fight for medical, social, and legal rights and all the rest on top of it? There are no easy answers here, and no guide book to being a strong advocate. Plus it’s harder when you are fighting for your child who herself is busy fighting this illness. Man! I think you just have to go with your heart, and if your heart says dig in your heels and voice Emily’s needs, then do it without regret. It’s true the Packard doctors are marvelous and truly want the best for Emily and the family, but you are allowed to disagree with the experts on what the best care entails.
Hopefully things will calm down under Tracy’s care and once Em is off Prednisone. I think it must be painful to see her bloated and less active and not her usual vibrant self. But she will come through this! Does she like being read to? I’d be happy to come over and read to her or start bringing over books that she might like (I know lots about children’s books). Like everyone else on this blog here, I just wish there was more I could do.
Kim Z
I understand why both of you must have been so scared, and I'm glad you asked around and multi-confirmed it was OK to take her home. They always say to get second and third opinions on medical decisions, so why would this case be any different?
Hooray for Nurse Tracy! I'm so pround of you guys.
Hugs, kisses and get well wishes to Emily. I hope she can get back on her cancer treatment right away!
I am just catching up, having been offline since Monday. So very glad to read about how quick Tracy was to notice the difference in Emily's forearm and that the clot was discovered sooner than later. I can begin to understand your frustration and anxieties over the events of the last couple of days. You want so much more for her.
Always thinking of you, Pepper Family! Sending lots of good wishes and love, Jane.
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