This post is definitely more of a processing/therapeutic post on my end. Today was a tough day. Graham is doing great, but it was a reminder of how oddly stable but fragile our world is. 

There have been some small noticing – Graham’s heart rate has been creeping up over the last few days. His main attending isn’t super happy about it, but there isn’t any other indication that something concerning is happening.

There have been some “momcerning” things – one of his sites where the VAD enters his body has been bleeding the last few dressing changes. I’m terrified about infection. I’m sure the team is exhausted from me constantly bringing it up. His surgeon was awesome and stopped by today during the dressing change and confirmed that the bleeding was granulation tissue (per Google – a highly vascular tissue that bleeds super easily). No mom likes to see their kid bleed. He’s also in pain and has anxiety about the dressing changes. They used to go so great, it is dishearting when he regresses. I’m ready for these to be easy/easier again.

The bigger one today though – I woke up at 3 AM *thinking* the IKUS (the machine/computer keeping his blood circulating in his body) was making more of a rattling sound than it had been. We called the emergency hotline, and they said it was a fairly normal situation. I touched base with his team this morning about it and found out new machines would be here tomorrow. We planned to switch out the machines on Monday. My 3 AM concern prompted the team to prepare his backup just in case we wanted to switch earlier.

At 2ish this afternoon, Graham started alarming. Usually, this means his tubes are kinked or bent. When I looked at the computer with the alarm, it said backup computer failure, I heard the machine sound like it was powering down and then kick back on quickly. I can’t sugarcoat it, I panicked. Our nurse was awesome and went into protocol mode. The members of the team that could switch the machine were still on the floor. They were all rockstars, switching the machines quickly and with ease. 

GRAHAM HAD NO IDEA ANY OF THIS WAS HAPPENING. Thank goodness. He sat on one of his favorite nurse’s laps, sang songs, and watched YouTube. It didn’t take long at all for things to settle down and return to normal. His day nurse and the NP that has followed us through his whole journey stayed with us until everything was how it should be. 

The tears started flowing after (let’s be honest, during) the situation. Lots of emotions, but mostly being overwhelmed and feeling useless. A brilliantly constructed device has given me MONTHS of quality time with my son. This device, however, is human-made, and flawed. The fail-safe features worked as they should –  Graham was safe. The computer malfunction didn’t affect his VADs. But I would love to never have to experience any of that again.

Do I think the machine was actually louder at 3 AM? I don’t know – I don’t really think it was. I had three nurses/angels who have been in our room (probably more than they’d like to) say they didn’t think it was louder. But I do know reporting it had people on higher alert, and the team wasn’t completely caught off guard this afternoon. Thanks be to God.