So what happened the other week? So much suspense! Sorry…in some ways life seems even more crazy than when we were in the hospital. We’ll take it though.

Here’s the story of our hospital overnight February 16th to 17th .

So Kate has had a long-term IV (called a Broviac) in her chest since she was 3 months old. This is for a heart-failure medication. She was on the medication 24 hours a day since before that line went in. A line lasting that long is unusual. Typically they break or aren’t needed any longer or something. Kate’s kept working reasonably though.

After transplant, Kate is still technically in heart failure. This is acute (temporary) heart failure rather than chronic (permanent) like before. It is a consequence of her lungs having to cope with her old bad heart. Now, her lungs are healing, but slowly. In the mean time, she in in acute heart failure.

Her new heart and lungs are getting better and better. We had been talking about slowly weaning her off the IV meds. We had taken the first step down and were about to take the second step, as her heart has gotten much better. Once we finished the IV med wean, we still want the broviac as Kate gets regular blood drawn for lab work. There are labs at least once a week, if not more frequently.

We had been having some trouble with her broviac for some time. We regularly had it stop drawing blood out and had to put some medication in it to open it up. The other week, when we put that medicine in it still didn’t open up. When we tried to flush the line to clear it out, a small leak appeared. That meant a trip to the ER to either get it fixed or determine a next step. It also meant we had to stop her IV meds.

Of to the Children’s ER we go at 7:15pm. I’ll spare you the details but dang that was a slow process. Ultimately they decided, yep, we can’t repair it. We had to be admitted overnight. We talked to the director of the transplant team and we decided to try staying off the IV medication to see how Kate tolerated it. Kate was a trooper, falling asleep at about 11pm after a COVID test, which was required before she could be admitted. At about midnight we were admitted for observation back to our old unit, the Cardiovascular Intensive Care Unit.

The next day, the transplant team got us on the surgery schedule to remove the old IV line and place a new one during a 10 minute surgery, not counting prep and recovery. All went well. Kate had an echo to look at her heart function after 22 hours without her IV med. All looked good. We were discharged about 24 hours after the problem first appeared at home! And without IV meds!

So that’s the saga. We weren’t excited to be back but it was fun for us and Kate to see friends and for staff and friends to see Kate again! Kate had a small crowd cheering her on as she walked independently. It was really fun to see Kate acting like a toddler without an IV line, and without a food line since she wasn’t allowed food before surgery.

In general, Kate’s doing amazing. Today (Sunday February 28th) is Kate’s first day in about 2.5 months without any prescription pain meds! We’ve been slowly weaning them off and reducing the drugs she gets. Kate is clearly not too happy today but after 24-48 hours we’re hoping she’ll be back to her normal self.

With no IV lines, we are working on her feedings, too. Kate’s still fed by tube 100%. We are working on getting her more used to a non-continuous schedule and are up to her being able to be completely disconnected for 20 minutes per hour. It’s fun to see Kate take advantage of no lines. Lately she has spent a good amount of her “free time” twirling around in circles!

Life is still crazy. There’s lots of daily medical stuff to do on top of dealing with a crazy almost 2-year-old but we’ll take it rather than being in the hospital. We’re looking forward to actually being able to see people and do more things outside!

Thanks for all the ongoing support!