ICU to Home: An Unexpected Journey
Moving from ICU to HDU (rinse and repeat) to the ward... to the H word.
We spent around 15 weeks in the critical care section of the hospital before moving to the ward. Each area; ICU, HDU and the ward come with their own pros and cons which hopefully will come across in the following.
The word 'Home' is mainly banned in hospitals. It's like the word quiet. Never say to a nurse, "it's quite quiet in here today." You might as well go around saying 'Good luck' to actors. Ironically the last person who commented to a nurse it was quiet on the ward probably got told to 'Break a leg'. Quiet is the 'Q' word in hospitals. If you say it's quiet you can almost guarantee the emergency buzzer will sound and 3 patients in the vicinity will crash at once. Don't do it.
In the same vein, home is a jinxed word. If you're going to use it, make sure your child can't hear it. We talked about discharge and going home in front of Isla back in April. Then next day she had a seizure and we stayed for another month. Our friend's baby was due for discharge after mention of home, so she decided to explode her aorta, like you do. They stayed for another 4 months.
In fact, don't talk about plans in front of your child as it was the day planned to move from ICU to HDU, that Isla had her second cardiac arrest. It's just not wise to let them know the plan.
With that in mind, remember H-ward (Home) is the goal! It's where you're supposed to be! It just might be a long road and seem like it'll never happen. These kids do things in their own time and won't be rushed.
Speaking from experience, taking time out while your child is on ICU is actually the ideal time to. Not ideal, but follow the logic... On ICU they have a 1:1 nurse, maybe even 2:1 on certain machines. There are doctors on hand in ICU and a consultant milling about. Life threatening condition aside, they couldn't be any safer.
The instinct is to feel guilty leaving your little one in such a poorly condition. We felt so bad leaving the hospital while Isla was critically ill. The fact is though you can't actually do anything there and they are in great hands. Once we got to know the different nurses in ICU we gained confidence to have little trips out. The nurses were great at recommending places nearby we could go for a bit of normality. For my wife this meant a trip to the shops. Due to all the wires and need for access we weren't able to dress Isla but we wanted to be able to buy things for her. Little journeys to Boots or Next to buy simple things like blankets or little toys made us feel like we were treating her a little at least. We had 2 go to places within 30 minutes drive where we could at least share a light meal together.
I wouldn't say I ever enjoyed being away from ICU, I was always on tenter hooks. If anything happened the ward had my phone number so friends and relatives were under strict instructions not to ring me. My ring tone is the Game of Thrones theme tune. I still worry that doctors are ringing me with bad news every time I watch it, even if Isla is sat on my knee. My wife, however, loved the break from the Unit. For her it was normality and an opportunity to do the things she loved which had been taken away from her for so long. It might have been different for me I suppose if I didn't despise shopping!
She was actually back home shopping when Isla had her 3rd cardiac arrest. All had seemed fine in the morning so I stayed and she went with her mum and sister for a nice relaxing shopping trip around Bolton. That might be the first time anyone has used the words nice and Bolton in the same sentence (I'm from Bury). She felt awful that she wasn't there, however, her presence wouldn't have changed events. Her being bedside couldn't have had any impact on the course of that day. She felt most guilty she wasn't there to support me. The lesson being, don't feel guilty for having fun, it's the doctors and nurses who keep them safe and respond to an emergency not you.
If you're in it for the long haul and have got HDU and a ward to visit before you're discharged home, you'll miss the 1:1 aspect of ICU. Life at hospital is draining whichever part of it you're in. The step-down from ICU to HDU is daunting. There's less staff on hand and the care for your, still poorly littlen, is being transferred more to you. However, you have to take it as a positive. They wouldn't be moving to HDU if the doctors hadn't discussed it and felt that they could handle it. They're still in great, safe hands.
Some of our favourite nurses were on HDU and we were able to do more of the nice, parent things, like cuddle her! It's not always the case but ICU is usually reserved for ventilated patients, so it wasn't until HDU we really got to cuddle our baby. We were also now, with the help of nurses, able to:
Put her in a bath
Let her go in a swinger
Try sucking from a bottle (she was ng fed)
We had so much more freedom. It was scary as she was still a poorly baby. HDU is called High Dependency for a reason. The people on there are still highly dependent on the medical staff. It's a step in the right direction to that H word. You might even be lucky enough to skip HDU!
Isla's cardiac arrest on HDU actually set us back a few weeks and sent us back to ICU. However, this time Isla wasn't ventilated so she was quite a rare sight for ICU. The nurses actually had to set up a time table to cuddle Isla. Being ventilated obviously restricts ICU nurses from getting to do the nice part of nursing and getting to cuddle the little babies. Isla was now a novelty. While she was still having iv after iv of different drugs to keep her stable, she could actually be picked up and the nurses took full advantage. We'd come in in the morning to find disgruntled nurses as one nurse had 15 minutes longer cuddling Isla than they did. As parents we loved this as with all that attention we knew she was super safe.
Moving to the ward was scariest of all. I remember the trepidation of hearing the news when HDU rang telling us they were moving her to the cardiac ward. We were enjoying ourselves at Nandos too! Cheeky Nandos indeed! I'd love to say it was Nandos hot sauce which created the pooping myself sensation, but anyone who knows me, knows I'm a mild or garlic kind of guy!
The ward, like the rest of the hospital worked by progressing towards the exit. We started in the HDU section still so the change wasn't actually that big. It was still 1:2 ratio with hourly observations from the nursing staff. I don't know what we were worried about really. I guess it's again a move towards putting the onus on the parent for the care. You might be on a shared ward or have your own room but you are now encouraged to stay with your child and begin to normalise life. We didn't actually stay with Isla until we felt she was actually more aware of things and she had moved on to the Green, less dependent section of the ward. We learned the lesson to take advantage of 'quality' sleep while we had the opportunity.
I will go into more about life on the ward in a separate post as it is an entire article in itself. Going back to the point about feeling guilty leaving your child, at one stage one of the nurses stole Isla from us (Isla steals were quite a common occurrence) and jokingly frog marched us off the ward for a break. They won't judge you for having a break. They encourage it so don't feel bad about it.
We didn't tell Isla we were home for about a week after being discharged!