A bumpy transition home

Yes, that’s right: Cheeky is home.  Hooray! After seven weeks and one day, his bilirubin was low enough to come home.

Why did it take so long to tell us this good news?

It wasn’t the smoothest transition home, which took the wind out of the sails of our celebration plans.  Friday’s discharge to home was delayed, as we waited for the homecare company to deliver the feeding pump and supplies we needed to give him tube feeds at home (he’s still not eating or drinking much).  We got home around 6:30 pm, and hoped to get settled in for a pleasant night, but the pump was broken and instead we spent the night ordering a new one.  He woke up vomiting at 5:30 am, and had a rough day, culminating with a hole in his NG tube.

Yup, back to the hospital Saturday.

We must say that the ER handled his NG tube change very well. They were as quick as it could be and really good to him. The ER doctor said they were excited to see Naaman’s name pop up because they all remember him, for good reasons. An X-ray to be sure the tube was correctly placed, and we came home.

Crowd control the rest of the week.

Clinic on Monday was quick, as he’s doing “well” at home.  Being home comes with mixed emotions. He vomits, dry heaves, has sudden unexplained pain, sometimes can walk/sometimes can’t, has mood swings. Furthermore, the pump is attached to an IV pole so he can move around while it’s running, but it’s not so easy to play or even just ambulate with a rickety home IV pole.  Thankfully, his feeds are 12 hours overnight, so typically they go 7 pm-7 am, meaning he is only awake for a few of those hours to deal with the pole.  Frankly, we love and respect our nurses even more now that we have to manage his feeds, meds, and hydration ourselves!  We have a giant syringe to push water or Pedialyte in throughout the day, which looks totally normal in public…

It’s great to not live out of suitcases anymore and to make something to eat when we want it.  We are all very happy to be under one roof. Nonetheless, it’s been almost two months since we have had a “normal” family schedule, meaning there’s toddler and preschooler emotions all over the place.  Much of the time, Nadine and Cheeky are glad to be reunited.  The rest of the time, they make you want to lock yourself in the bathroom alone.

“I like shopping.”

Fortunately, Cheeky feels well enough to play and go places at least portions of each day. I asked if he wanted to go to the store, and he started looking for his shoes and said, “I like shopping, I want shopping.” Cheeky likes shopping, probably because there’s so much to see but also because everyone wants to talk to him. He wears sunglasses, has a shiny bald head, and has a NG tube on his face so he’s pretty hard for fellow shoppers to ignore.  He has gone for nice walks on the Quinnipiac Trail, gone for a bike ride with Mommy on a not-so-nauseous day, and checked out the new ALDI.  We took a “field trip” to the train station and Meriden Green while we were downtown today to drop Deanie at school.

Clinic today and more chemo Monday.

We are grateful for your support, Team Naaman! The Cut-a-Thon Sunday was awesome. Check out our Facebook page for cool video of the event, including Naaman’s debut on the news!