What can patients and their families expect during the hospital stay?

What can patients and their families expect during the hospital stay?

Every single center, every single children's transplant unit, it's a little bit different in how they do things.

Things that are very common is every single day the medical team will come by typically in mid-morning, to talk with the family about labs and vitals, what the plan is for the day, what things are going well, which things we're watching more closely or worried about, and things that we're worried about, what we're doing about them.

They can expect that their nurses will be coming in frequently throughout the day to be checking vitals.

So blood pressure, heart rate, temperature monitoring for fevers, how well our blood is oxygenating, to be documenting anything that they ate or drank to hang IV fluids and medicines, to give them oral medicines and record when they use the bathroom or throw up.

So that way we're keeping a very close eye on how much fluids going in and how much food is going out, because that can lead to problems after transplant.

We watch almost everything that happens with these patients.

So this is a very disruptive to normal day to day function, which is another reason that they're in the hospital.

But it also makes it hard to sleep.

So sleep when you can. When you're in the hospital, if your child is taking a nap.

I encourage my parents to take a nap when their child naps, similar to when you have a brand new baby asleep when the baby sleeps.

I encourage doing the same thing in the hospital.

Know that things over the weekends tend to be a little bit more quiet, and some of our additional services that are typically there during the week are not as available over the weekend.

So maybe that's a time to focus on really trying to save your activities that you have for your child, for these long stays, and using those on the weekend to help keep them busy and distracted.

Even if something as simple as binge watching a new show or a movie together that you've been wanting to watch.

Saving some of those for these some of these weekend days that can be long and a little bit more quiet can go a long way.

Know that, if the child gets sicker, we often have to send more tests.

We often have these patients in some form of isolation, so they're often not able to leave the room for periods of time because of the risk for exposure to different pathogen, particularly viruses, because sick people come to the hospital.

And we want to minimize those exposures when their immune systems are so very weak.

So those are probably the things that I think most of in the hospital for these families. And what are we expecting throughout the day.