Bad day

An appointment I had first thing was postponed til later in the day, so I started to get things ready in the apartment for Reu coming home on Monday. I'd made some calls in the morning and when I finished washing bedding, there at the base of the machine was my mobile phone, washed and blow dried. All my numbers. Jason was charging a new one up for me and I picked it up from his office, very concerned it'd be late by the time I got to Reu and knowing he wouldn't be getting much attention.

When you move from the PICU (intensive care) onto the ward, nursing care drops in half. This happened on Tuesday night after two new trauma admissions arrived and Reu went to the top of the list of wellness, the ominous sound of the Baby on Board helicopter's propellor roaring above our heads. This means that Reu is often left by himself in a room with another patient and where I doubt his alarms can easily be heard down the corridor. It worries us sick. I remember Susan our primary in the PICU mentioning that you literally had to be there all the time, but after 3 months of PICU life, well, you have to live, you have to do things, you can't be there all the time. The other dad was sleeping on the sofa in that shared room anyway.

I was feeling frustrated with myself for the mobile phone incident wondering how I'd get all those numbers back again relating to Reu's development, schooling, Drs, and thinking how I desperately needed to get in and be with Reu and whilst doing so, reversed out of the parking spot outside Jason's office, pranging into his colleague's car. My first ever prang and something I feel absolutely terrible about although Carla is assuring me that it's all ok, no damage.

When I walked into Reu's room, the alarm was sounding that he was desaturating and I was met with the horror of dirty clothes through which I could see his chest retracting badly, struggling for breathe and looking grey, sweating and barely meeting my gaze. I immediately grabbed the suction cathetar and thought to hell with sterilisation and gloves (as Jiffy says, you can clear a virus with antibiotics later, but you can't...), poured a vial of saline water into his trach and began suctioning profusely. I got through another and yet another suction cathetar. There were so many mucus plugs that the process itself of suctioning them out of his trach only resulted in him having a completely blocked airway. I specifically asked that he be deep suctioned at night and first thing in the morning after I'd arrived yesterday to find him in good need of a suction.

I called the panic button and the nurse arrived soon after unaware that he'd been desatting and saying he sounded fine earlier. Dr De Oliveira, cardiologist, walked in soon afterwards and put her arms round me and the nurse took over. I just burst out crying and got Reu some oxygen. Dr De immediately ordered that Reu be moved to a room of 4 where there's always a nurse on attendance, reminding the nurse that he's chronic. That's sad to hear but it's true. If you fill his trach hole with thick mucus, what is there left to breathe through?

What if I hadn't arrived when I did? Reu has such a little leak left, that is, residual space left by the trach in his trachea through which sounds can be reverberated, that it's difficult to know, unless you're listening to an alarm, that he's in distress. At what point would a nurse have arrived? I felt more immediate distress than I have for a very long time and other than the 6 failed extubations, this was retraction and desaturation on the scale of when we rushed down the freeways to the ER on 12 July, the start of this long admission. It was at the time and I can say now in retrospect, horrific.

I gave my boy a proper bath for the first time in 3 months, taking all his wires and tubes off and restoring his beauty and dignity. It was the first time I've held him without him being attached to anything - whether wires, tubes, IVs, oxygen, nasal feeding tube etc, since birth. The trach tie velcro had scratched his neck and hadn't been replaced for 2 days, and the gauze was covered in secretions, another oversight.

His Gtube (feeding) Mickey button deflated 6 weeks ago and whilst I've been chasing up a replacement, he's since been on a Coreflo and during this episode the Coreflo spilt its contents of formula onto the floor. The nurse couldn't be certain of how much he'd lost, so basically, he lost the food for good. Surgery had been telling me that they couldn't replace the deflated Mickey with another until after discharge so I said, ok, discharge Reu, we'll sit in the garden and come in as an outpatient 5 minutes later. Our insurance company agreed. Trips back to the hospital are critical, but need to be kept to a minimum. Last time he came in as an outpatient, well, that was 3 months ago and 2 days later he was admitted.

I waited til Jason arrived at the hospital - we're going to make sure one of us is always there with him throughout the day til he comes home - and, after a pelt along the freeway, only relaxed when I sat in the Hampstead born dentist's chair which faced the Santa Monica Mts.