Coen Update

[Jodi Kayler]

Sorry guys. I leave you a vague update and then never give any details. It has turned out that for some reason, at the hospital, I can't access this website--so I had to wait until I could run home for a few. Here's the whole story:

Thursday Coen said his throat hurt which unfortunately is code for "I don't want to go to school tomorrow". We didn't think much of it since Friday he woke up and didn't say a word. That same day, we finally found a place that has a H1N1 vaccine so we sent grandpa and Coen off to get immunized. What Coen didn't tell us is he was shivering and not feeling well the entire day(there is a negative to having a very tough kid). That night Coen spent the night at Grandma/pa's house and woke up throwing up.

Saturday we immediatly hauled him to the ER. Labs showed that creatinine was up to 2.13 (from 1.66) so he was admitted for dehydration. At the time, we didn't know if he had the flu or if the vaccines were responsible. Sunday he developed fever, chest pains, and was very ill. Turns out he has pneumonia in his right lung and one of two blood cultures was positive for streptococcal pneumonia. Seriously? He didn't seem sick, but we actually think he had been sick for days and just never mentioned it.

After antibiotics, he is feeling entirely better today. His labs are iffy. HCT down to 28, Platelets 200, Creatinine is improve to 1.88. Haptoglobin is still holding perfectly stable. Docs aren't sure if the lab changes are due just to a really bad strain of bug--or if the HUS is showing a little. So far, he doesn't show his typical HUS behaviors which makes me feel relieved. Tomorrow he is due for his normal Soliris dose so hopefully if there is anything brewing, it will stop it.

So looks like a couple more days at the hospital but all-in-all it has been a fairly easy stay. Good new it looks like everything was caught and treated VERY early. Thanks for all your well wishes. I appreciate you all.

[Lisa Goble]

Wishing "the bug" goes quickly on its way. How scary everything is for us, eh? Thankyou for sharing, i am praying for your little guy....hope you are home soon. Take care.

[Grace]

I hope Coen continues on the mend. Thanks for sharing.

[Phyllis Ann Talbot]

Jodi - thanks so much for the update! Whew - I think we all held our breath to see if the this was going to be another aHUS relapse - so happy it seems to be turning around though SCARY!! Take care and tell Coen to behave himself! ;-) He's stressing us all!

[Sara Palmer]

Glad all is now improved, heart in the throat there for a while I know. Take care.

[Melissa Hearn]

Scary! Sorry to hear that Coen hasn't been feeling well, and that you've been stuck at the hospital. SOOOO happy to hear that he is starting to feel better and hopefully you'll be coming home soon!! Big hugs, prayers and well wishes being sent your way!!!!!!

[Zofia]

So glad he is better :)

[Cheryl Biermann]

Great big sigh of relief! way to go coen!

[Jodi Kayler]

Update for this am: HCT up to 28.5, PLT increase to 235, Creatinine down to 1.57. Haptoglobin increased to 260. WHEW!!!! I was really worried that Soliris wouldn't be able to control this but all looks good. Can you hear my sigh of relief? Looks like we will be out tomorrow. We've been joking that instead of purchasing a timeshare, we just purchase vacation points at the hospital.

Donna, thanks for the reminder for the pneumonia vaccine. Coen had his 5 years ago. We're asking when he should get another. I think I'll wait until we are free and clear from this ordeal though.

[Heather Still]

Sorry to hear he's been sick. There's so much going around right now. Thoughts are with you.

[Svetlana Finley]

Jodi,
Thanks for update, i am glad he is better and u will be home very soon.