It's been an emotionally draining weekend.. Yesterday was a rough day for Cole. We're back on the high dosage of steroids, and they are certainly in full swing. He's on a higher dose than adults take which is crazy.. 😳 Today has been tough, but not as bad as yesterday.[...]

Today was our second visit to the HEMOC clinic which will be weekly, for now. This includes an overall evaluation, change PICC line dressing (not fun), blood work to check our CRP level (inflammatory markers) which is crucial right now, X-ray (didn't have to do since we did it in the ER yesterday), and meet with the doctor about status, new information, and discuss the current and/or revised plan.[...]

Temp went up to 101.4 which is high, but the IV antibiotic he got in the ER last night lasts for 24 hours and since we're already scheduled for a visit to the HEMOC clinic tomorrow we can treat the fever with Tylenol at home.  Glad we don't have to go back today!  If he worsens in any way or we feel he looks/feels worse and are concerned, then we need to go in. Otherwise, we should be good until our visit tomorrow. [...]

Unfortunately, yesterday we dipped a little on our status. Throughout the day Cole's temp was 99 point something but then last night it elevated to 101.7. Because he has a PICC line, is on steroids, and being treated by HEMOC, once it hits 100.4 we are to call and take him in.  So, we made the trip to Children's Mercy ER.  There aren't local specialists for pediatric PICC lines so it's best to go to Children's Mercy as many ER's are a little nervous with the pediatric PICC's. We want the best care so making the drive was the best option.[...]

We've been home for almost a week and surprisingly, it feels like it's flown by.  We are still in a holding pattern while we wait for all of the pending tests, etc. that were sent out so there is no new information. [...]

On a more positive note, Big Slick KC visited our room at the clinic today! For those not familiar, please visit www.bigslickkc.org. [...]

So we had our first visit to the HEMOC clinic today and what we thought was going to be a quick visit for x-ray and check-in on things turned out to be the majority of the day. We weren't prepared for this, but we were told today that we should always plan for that. Good to know...now.... geesh 🙄[...]

First night home felt amazing! Our own shower and bed felt so wonderful. 😊

I can't recall the last time I slept through the night so of course I woke up at 2am to check lil man and then of course started running through everything to do and check in my mind. Was nice to fall back asleep and not worry about nurses or anyone coming in to check things. Cole woke up at 5:30am and wanted to build Legos, but fell back asleep and got up around 9am. Steroids still making us a bit grumpy but it's getting better.[...]

We get to go home sometime today! 👍🏼

X-ray this morning looked the same regarding amount of fluid in the lung, etc. but all vitals are stable and fevers controlled (hope they stay that way), and they feel we are ok to go home for now.  We will still have our PICC line in so we will have to take very good and safe care of that and we've received proper instructions and treatment for it. All medications will be oral at home.[...]

Another day with no fever!  No new information today and the steroids have definitely set in as it wasn't the most chipper day. But, tonight marks 20 nights of a hospital bed so who would be chipper at this point?! This morning Cole said, "I think I would act better at home.."  We hear you kid, we hear you.  :-)[...]