Closure

It occurred to me during the night in intensive care, when I wasn't being woken by the siren of alarms declaring your apparent respiratory distress, but as almost always in such cases, just a blip caused by you kicking at your leads, that really this is the first time you've have a closed respiratory system since just after birth.

When you were about 2 hours old, you were setting alarms off all over the place, but sadly then for real reasons and going blue. You couldn't breath efficiently by yourself without oxygen because your heart was too week, with holes and stenotic valves. Soon after, you were given oxygen which you came home on after 10 weeks in intensive care, but 3 weeks later were admitted with pneumonia and were put on a ventilator. Exactly 3 months later, you came out of hospital, the ventilator gone, but a tracheostomy in place because of repeated failed attempts to get you off the ventilator, and your open heart surgery under your belt (shirt) much sooner than had originally been foreseen. With a mostly healed throat, when the tracheostomy was taken out last May, it left a hole, a stoma, which didn't close by itself surprisingly. Anyway, that's down memory lane, but the point is that yesterday's surgery had been to do just that: to close the hole and tidy up some of the loose and floppy tissue in your trachea. From my records, it was surgery number 17. And you're still only 3 years old. The fact that the stoma is now surgically closed, undertaken by removing some of the skin around the stoma which would not adhere to itself, via an horizontal incision, and then stitching up the tissue from within, means that for the first time since you were 2 hours old, the point at which I started this rambling medical tale, you are not only breathing by yourself, but with a closed respiratory system. The leak of air caused by the hole and probably allowing a little air to pass both in and out is now gone. It's all you now.

The dressing you see here will be off tomorrow, then the sterile strips will fall off within a week and the stitches underneath will simply dissolve away. I know you're looking very pale and tired here, so I'll leave you now love to get some sleep.

Standing in the hallway outside the hospital's strikingly fabulous playroom, huge open windows looking out over a vast modernist terrace furnished with toy cars and basketball hoops, you skip ahead, your legs having found their feet again after a day on your back. This is a super modern new hospital, a surgical waiting room like a boutique hotel's comfortable lobby, huge windows filtering Southern California light, white reflective walls, chrome and steel, a fabulous cafeteria which is more like a cool airy restaurant and which spills out onto the terrace outside where one can enjoy Mexican, Indian, Asian, gourmet sandwiches, salads or fresh-baked pizza. I have always been acutely aware of my surroundings. Each of the patient's rooms are private which means a huge deal to families needing to spend the night beside their loved ones. Although we were in intensive care this time just for close monitoring, the floor (wards) also feature private rooms with a parent bed. The hospital has not only great design, but a fantastic architectural foundation. I say all this of course because the level of medical care is unsurpassed. Whilst I cannot have any regrets for the 11,000 miles to see Reuben every day for 5 months after he was born because of the fantastic critical and life saving care he received at CHLA, and then for the next 2 years after, the choice of hospital between UCLA and Children's was out of our hands at the time and depended on the availability of a bed, but once embroiled in the system, it is difficult to make a change that can benefit everyone in the family. It's the realization of those extra miles, and Callum being at school in the UCLA Early Intervention Program just a walk from the hospital across Westwood Village, to the easy freeway accessibility from home that prompted the change. If you have to be in hospital, UCLA, voted Best in the West and one of the best in the US, feels like a good place to be. It breathes rehabilitation and whenever Reu joyfully skips through its airy atriums, he's recognised by Drs and nurses.

The volunteers gave Reu Steve & Barbie to take home as gifts. We bumped into Reu's cardiologist across the hallway and he offered to do another echo on Reu's heart which showed a 60 degree gradient indicating the turbulence we knew about from what is either a subaortic membrane left from the VSD repair to his heart, or a piece of the VSD patch itself. Reu wasn't up for this at all I might add! Whilst his pulmonary valve is still a little stenotic, the bicuspid valve which I'd been fretful over doesn't seem to be causing a problem. So his second open heart surgery will be within 3 years, before his heart goes into any sort of failure and before the walls of his heart which are on the upper echelons of normal thickness, become more thickened. The heart is a huge muscle and if it works too hard, it gets bigger muscles. As simple as that. But something to be avoided.

And now Reu's home. I fell asleep for a few hours this afternoon - the night shift before surgery and then the night in hospital always throw me and I have absolutely no problem sleeping during the day to catch up. I'll head to bed in a minute now that night nurse Jenn has arrived and sleep as fitfully as my boy with his closed airway and Callum, who's gone to bed with Steve & Barbie in his hands (actually he disgarded Barbie after taking her bikini on and off, on and off, on and off and having me do the same repeatedly for him).

PS: It also occurred to me that even after 5 years, I'm glad not to have a TV connection at home. Whilst it's been good catching up on the world's news, particularly now, my foray into watching reality TV which seemed to be all that was available leaves me thinking, What a bloody waste of time!

PPS: I only have 2 images from today and this was taken pretty late and with little natural light left in the room. It's more of a moment shot. You're home.