This is Ken; I stayed with Riley again last night. He did reasonably well and his fever subsided around 9 p.m. The nurse administers diuretics at 4 a.m. and the sleeping ends at about 4:15 when Riley needs to use the potty. This continues every 15-20 minutes for the better part of two hours which means nobody gets much sleep. Here's a quick update:
- The x-ray looks better today, it seems the effusions have decreased a bit.
- As a precautionary measure, the doctors are going to begin treating for pneumonia with another course of antibiotics (above and beyond his daily prophylactic amoxicillin).
- Riley's fevers have come and gone over the past 48 hours.
- They also sent a blood culture to rule out a secondary infection. Usually they like a secondary draw in addition to the femoral line. This is to verify that the line itself isn't contaminated. Given how miserable the previous attempts were, the docs have decided to just send the first draw without a secondary sample. If the culture is positive, we'll consider taking a secondary sample. If the line is contaminated, they'd need to put in a new line (let's not go there just yet).
- An MRI tomorrow is looking unlikely. The anesthesiologists don't like putting kids under in a weakened, viral state. Since they only do pediatric MRIs once a week, if it doesn't happen tomorrow we're now looking at next Wednesday 3/14.
- A heart cath on Friday is still a possibility. The cardiologists on staff are going to consult with Riley's cardiologist, Dr. Tarnoff, to see if he'd like to proceed with a cath ahead of the MRI or if he wants the MRI first. If the cath can happen, we'll likely have the cath on Friday assuming Riley's effusions continue to subside.
- The cath will only be useful if they are investigating Riley's "steady state" cardiac function, meaning unimpeded by the effects of the virus. If the effusions come down over the next two days, they'll proceed. Otherwise they'd wait to perform the cath.
- Again, if the cath shows any obstructions that can be addressed immediately, they'd be stented right there in the cath lab.
9 comments:
Thanks Ken for the update. Sounds like the team has a plan of action and that no MRI is a positive thing right now. I am thankful for all of you out there who are helping our family in one way or another, visiting Riley, Ken and Suzanne, bringing food, comfort, friendship, care for Carter, doing errands, whatever...a huge thank you from the east coast contingency of the family. You are so much a part of us too. Grammy Peg and Wayne
Hey Ken -- thanks for the update. I'm following your story very closely and rooting for the good guys. But i am a little confused. you say he's in a viral state -- does that mean the docs think he has a virus that has caused/aggravated his current health situation? (with potentially a secondary infection on top of that?)
Anyway, much love from the damp depths of Oregon.
I'm in Chicago, following Riley's progress, as well as that of Baby Wren and Ramona Mae (ramonamae.com). My wife and I are friends with Ramona's parents Jane & Andy, and there's a bunch of others on that particuar rollercoaster. Whew. I emailed Shannon about interviewing her for a feature story on blogs/sites like your own dedicated to keeping loved ones informed. Your perspective as parents who've been baby-blogging for, what, 2 years, would be most welcome. By email or phone, but if you'd rather not, I understand, and will keep Riley in my thoughts and prayers. If you're suspicious (and who could blame you?), I can send you a resume to check out, links or previous articles etc. I'm at dwmc1025@yahoo.com.
Hope the Antibiotics help and his fever subsides. Hopefully they are being aggresive with the antibiotics with Riley being asplenic and all (Vancomycin or Gentamycin?).
Also, if PLE is what is going on, his cellular immunity may be altered (aka: weaker immune system).
Glad to hear his effusions are down.
What's the latest on the alpha-1-antitrypsin stool sample test? Are they still following up on that for the PLE?...
Hope you guys get some rest...
-Dave and Marisa
Thank you again for the frequent and detailed updates. I know you both are tired and stressed, and how difficult it must be to find the time and energy to update the blog. We really appreciate it - it means so much for those of us who are far away.
Hopefully he'll be able to do the cath on Friday, where you might get some answers. I hate the thought of Riley getting another invasive procedure (even minimally invasive like the cath), but it seems like it's going in that direction anyways, so might as well do it now and get some answers.
I absolutely hate the thought of Riley in so much distress. I look at my 3 year old, and I think of how hard it would be to see him like that - and not even being able to explain to him why. It breaks my heart. God bless you all and I hope things start getting better soon.
We are keeping Riley and you all (his family) in our daily thoughts & prayers & we are appreciative of your blog with the detailed updates.
Sorry, didn't mean to leave it as an anonymous comment on that last comment...forgot to sign it from Melissa & Katie in Tonawanda
I'm so sorry that Riley is having to go through this. I'm so sorry that you're all having to go through this again. I hope those docs are doing everything they can and treating you all well. If grampy needs some extra Carter looking after just tell him to call. We love you guys, keep your chins up.
The Lawrences
I would like to see a photo of Riley. mom grandma or Gail Thank God for Jack. He is a blessing for you especially at this time.
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