Update and PICU Life

Hello, Team Naaman. Our family is grateful for the prayers and support that has poured out this past week especially. He is one loved little guy. He still struggling to find the balance of fluids to help him heal. It feels like one minute up and one minute down, but his liver doctor just came by to reiterate that his liver function is improving.  Typically it takes a good month. In the meantime, we are trying still to get those kidneys happy and keep all his levels in check. He is still sedated, on the breathing tube/ventilator, still trying tube feeds, and still quite swollen and puffy.  We like to be positive, however it is important to know that his situation is critical. Prognosis is still unclear.

What’s new from yesterday?

A LOT happens every day, even from hour to hour, so we couldn’t possibly include all the details. Here’s the highlights:

1. His drain came out because that was all done draining any thing it would be able to get from around his liver.  The rest needs to just happen by absorption and processing in his body, we hope.
2. He also now has a nasojejunal (NJ) tube [What’s an NJ tube?]) that will directly put his feeds and meds to his small intestine to be sure he is really taking them in.  The NG tube goes to his stomach and he was often just hanging onto things there.
3. He finally had a BM. Amen! He’s got to get things moving.
4. He had an A-line (arterial line) put in to monitor blood pressure, since that has been somewhat up and down.
5. He had another line put in his foot for a diuretic.
6. Ammonia is still being monitored because if it stays high, we are back to considering dialysis again.

PICU Life

Naaman is staying in the Pediatric Intensive Care Unit (PICU), instead of his usual oncology and hematology unit, since he needs constant care and especially access to the respiratory team.  When we say “constant care,” we mean 24 hours a day.  One can “catnap” here but no more.  It’s all about perspective.  Just stay up and read a book or watch television, rather than fight it and try getting a full night’s sleep.

We are one of the lucky ones because we have our own bathroom with a shower, as well as a private room.  I can’t believe some parents have to shower in the common bathroom in the hallway.

While we don’t have a fridge or cabinets/counters in the PICU, we do have an electric kettle set up on the (clean) commode in the bathroom so we can make tea, boil water for soups, etc.  There’s a lot of jokes in there.

There isn’t much place to escape to, although we can walk to the Healing Garden or to a Parent Room that’s open weekdays until 5:00 with books and mediocre snacks.  With Naaman asleep, it is easier to steal away for a few, but we certainly can’t go far before we are needed.

Rounds include about twenty team members in the hallway outside of our room every morning.  In oncology, it’s usually just a few people.  It’s about 45 minutes of discussion about his updates and plan for the day.  Depending on mood, we may or may not attend, since every department will still visit us all throughout the day anyway.  Nonetheless, it is beneficial to see how every discipline works together to form the most effective plan, and we can ask questions.

Naaman will be in the PICU at least as long as he needs a ventilator, and we don’t know how long that will be.  We are grateful for prayer and for care packages and all the other goodness sent our way.  We apologize if we are days behind in answering text messages and phone calls, but please know we are happy to be so cared for. xx