June 17, 2016. 1st clinic visit

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 🙄

Apparently these visits take a while because there's a checklist of things we need to do, and we have to wait for everyone to filter through our room. The nurses can take a while because they are helping with chemotherapy in other rooms and we have to wait for the doctor, etc. So they recommended bringing things to do or they provide iPads, activities, tv, etc. We also weren't told to bring all of the information about the abundance of medications he's taking as we assumed we wouldn't need to take that for this appointment, but we do... I'll save the rant of my frustration I felt regarding this, and feeling like an unprepared parent which I am NOT. They tried to make us feel ok though.

Cole had a lot of pain this morning and we STILL need to poop. He's still full all the way up causing pain in his stomach. We've increased meds to try to help with this. Tummy along with increased pain in his side where his procedures/chest tubes were caused more pain that his pain pill didn't help. So at the clinic they gave him morphine which helped while we waited. It was so tough watching him feel pain.

Getting the dressing changed on our PICC line was NOT fun to watch. The cleaning stuff burned so they'll switch to a different kind next time, and he just cried and kept asking them to stop making him hurt. Can't explain how hard it is to see your child crying from pain and begging the very people there to help him to stop. Pained my heart. We'll have to get the dressing changed there every week so we go again next Friday.

We are still waiting for the results to come back from the specialists they sent out to. The one at Harvard wanted additional samples which means he too is stumped like the others. So that will take another week so we don't anticipate hearing much until then. In the meantime, we continue with the steroids, anti-inflammatories, antibiotics, pain meds, flushing and caring for the PICC line, etc. until we have a new plan..aka, a diagnoses.

But we get to stay home and continue treatment here for now which is great so we'll take it.