Hospital Stay: Day 2

Another busy day here in the hospital. We spent most of the day waiting to have his PICC line inserted. It finally happened at around 4pm and once an X-Ray showed proper placement, they were able to remove the IV. Now Toe will receive IV antibiotics via PICC line. It's a much better long-term scenario, but he's pretty sore tonight.

We thought he would get his PICC this morning, so he started fasting at midnight last night. Then when they coordinated everyone for the PICC insertion, it was too late to change plans and have him eat. He had about 3-4 hours where he could have clear liquids, but other than that, he had no food until after he got his PICC . This gave us some real ups and downs today. Kiddos with CF are so encouraged to eat, they are not really that familiar with hunger (at least not this one).  By 2pm, Toe was pretty hangry.

Having said that, he loved the popsicles he received as clear liquids. During a high moment (getting his second popsicle) he said, "If there's more to life than this, I have no idea what it is. All the popsicles I want -- for free!"
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I think he was more upset about the hunger than the PICC insertion (which involved moderate sedation and having someone from Child Life Services to distract him).

Toe is still on maintenance fluids, so trips to the bathroom involve a trip with the IV stand. It's a waltz, coordinating the stand past all of the furniture. We play the Blue Danube and he dances on his way. To prepare for his PICC insertion, we actually covered him with stickers (a bullseye for the insertion point) and then had him waltz down the hall. We do it with style.

I'm going to start posting photos Toe takes... maybe tomorrow

 We also met with his team of doctors, the teachers who will work with Toe for the next couple of weeks (we talked about his school situation and school work0, met with Child Life Services, had a volunteer play with Toe while I took a walk, saw our CF Social Worker, did four breathing treatments.

Because we are in a respiratory wing and there are other kids here with CF, we are on contact protocols. Anyone who sees other patients has to gown up when they come into the room and we are effectively in quarantine. We are limited to Toe's room or can go walk around the rest of the hospital (with a mask). No play room, family room, or anything in our ward.

I had forgotten how busy days are. Between meds, meals, treatments, volunteers coming to play with Toe, various departments coming to visit us, we don't go much longer than 20 minutes without someone popping in. I think that calms down as we get into a routine. These first few days are busy getting everything set up and running smoothly.

We are still doing well. Toe had a really rough time between 2 and 5pm today until he could eat, but has been a trooper. We find our laughs where we can. And we found the thermostat, so tonight will be warmer (I have a cold, so I thought my body temperature was off.... turns out the thermostat was set to 50! Of course Toe didn't notice...)

IV in right arm, PICC in left, finishing breathing treatment on the way to X-Ray