The Letter

Plop.

A thick white envelope plopped through my letterbox this lunchtime. I rightly suspected it was from the hospital and would have the contents of Wriggles' upcoming operation in it. 

Dear Parents or Guardians,

Please bring Wriggles to be admitted to Ward 1a, new Victoria Wing as an in-patient on:

DAY: Tuesday

DATE: 21st August 2012

TIME: 12:00PM

**WRIGGLES WILL BE ADMITTED FOR AN ANAESTHETIC/RESPIRATORY REVIEW AND WILL HAVE PEG INSERTION AND BRONCHOSCOPY ON THE MORNING OF WEDNESDAY 22.8.12. SHE WILL NEED TO STAY IN HOSPITAL FOR A FEW DAYS FOLLOWING THE PROCEDURE**

Please make sure your child has had a bath the evening before and that finger and toe nails are short and clean. Please arrange transport home BEFORE admission. It is not suitable to take public transport. 

Yours sincerely,

Paediatric Gastroenterology

Accompanying was a thick booklet describing about anaesthetics. Most of it I knew anyway from having gone through the finer points with consultants and nurses. It sent a chill through me though.

THIS IS REAL.

This is happening.

Although I am a little daunted by the PEG and tube-feeding for the forseeable future, I am mostly at peace (or at least too exhausted to argue) about that. I have suspected we would end up with one type of tube or another due to the ongoing oral aversion and reflux, so although it was a surprise to receive one on respiratory and neurological grounds, the end is the same. So that bit is as ok as it is ever going to be with a parent. I know a tube will help massively with chest problems and also hopefully decrease vomiting and gagging and importantly give us a ton more freedom to approach feeding from a truly more relaxed angle. I am fine about the bronchoscopy and endoscopy bit, as I have felt for a while that it is high time someone paid more than 5 minutes attention to the state of her airways, lungs and oesophagus.

The bit I am a bit less fine about in the anaesthetic.

Obviously, it HAS to be done. Obviously I want Wriggles 110% comfortable and blissfully ignorant to what is being done and investigated. But it terrifies the living daylights out of me.

I am confident in the skill of all those involved and I know that general anaesthetics are very low-risk and that thousands of people a year receive them, from neonatal to the elderly, and that it is incredibly rare complications happen. I know that people every year in acute states of illness are operated on successfully and laugh in the face of anaesthetics. I am also just hyper aware that we have already been warned that the risk has increased from this recent admission, putting us in an area where in an ideal world, the surgeons would rather wait quite a while. I know provisionally a space is being reserved for us in PICU in case either something happens under anaesthetic (mostly likely a respiratory arrest) or Wriggles becomes rather too friendly with the ventilator once the anaesthetic wears off. I am so scared that we might end up in PICU again and that once more, my baby girl might be tested to her limits. I have spent nearly three weeks with her in a sedated state, and I have no wish to do so again. More to the point, I have no wish for her to be in that state as long as she lives.

Next week, is not going to be a walk in the park.

Choosing to See

One dilemma for parents of ill children, particularly very young ones, is choosing how much to watch with the consent of the medical team; how long to stay and when to leave. As well as being there for your children, you have to protect yourself as you are the adult living with the knowledge, the memories and the decisions.

I was watching the fabulous yet emotionally wrenching Great Ormond Street on BBC 2 this week about pioneering and experimental surgery. One brave set of parents were asked an incredibly difficult question: if an operation was going wrong, would you want to be brought into the theatre to be with your child? I have never been in this exact position, but I have been asked a similar question. When Wriggles was in Intensive Care and had her cardiac arrest, one of the doctors who wasn't doing life saving procedures gently suggested I might want to leave.

I didn't.

"Are you sure?" a nurse gently asked. "It can be very distressing."

I stayed. To her immense credit, my best friend who had happened to be sitting with me at the time, stayed with me. I'm not sure I could watch someone else's child go through that.

Although since I have been haunted by the memories that have been fiercely burnt into my mind, I don't regret it. Some people might see it as rubbing salt into a wound, of doing further harm to yourself, of not looking after yourself. It is a very personal thing and one that I think can only be truly decided by the exact circumstances in that exact minute, and the severity and gravity of the situation. Obviously your own beliefs also play a part and your knowledge of your capabilities. 

When Wriggles was is NICU, I preferred to stay with as many procedures as they would let me. I stayed for the head scans, the retinopathy exam, the blood tests. I stayed when they had to stimulate her at times if she lost colour and had apnoeas and bradycardias. I don't think that this makes me a better person than someone who couldn't stay at all. Everyone knows what is best. In NICU, a large part of staying for procedures stemmed from a sense of guilt and a very precarious mental state that I was in. Yes, of course I wanted to stay for Wriggles' sake but also I felt I had to. As I have written about before, the very early days were a minefield that were dictated by pure shock and with no roots in emotion or rationality. The guilt from this once it passed was horrendous and taunted me that however much I loved her, I could never make it up from the ambivalence of the first days. Of course this isn't the case. I know now that shock and trauma breeds automatic responses that don't reflect love, passion, family, memory or truth. I became a little obsessed with the idea of staying by her as a mark of my devotion. Luckily, I didn't see anything too horrible and was rewarded by being able to sneak extra cuddles as compensation. Had our journey been far more rocky, it could have been a different kettle of fish so close to that time.

Intensive care at 6 months old was a different situation. I was mentally a lot more "with it" and had allowed myself to fall hopelessly in love with my daughter whom I had cared for, for four months since discharge. I didn't have the same conviction that leaving the room was the equivalent of deserting her for good. However, I still stayed throughout the ups and downs. This was very different though: in NICU, she was very sick and very fragile from prematurity. But, aside from the first week of her life, there wasn't a point that either the medical staff or I believed her life was endangered. Vulnerable, yes. Developmentally uncertain, definitely. But on the absolute brink? If anyone thought so, they never said. In intensive care though, she was in a very critical position. At the beginning of the stay, although I wanted to be with her, with persuasion I could walk away and sit next door when they intubated, x-rayed or took bloods from her. At this point she wasn't yet critical so I was confident that I could come back and she would still be there; be mine. The ties became much stronger over the coming days as she became sicker. By day 4 of PICU when she arrested, I was thrown into the dilemma: do you want to watch? 


There was no way I was leaving then. If, in that split second as I had to acknowledge, I might loose her then I wanted to be with her. I wanted the person that loved her most to be within touching distance if the unthinkable happened. It's a funny parallel: you simultaneously never give up hope and believe stronger than you have ever believed in anything in that moment, but at that same time, you have in your face the very real fact that life is hanging in the balance. It is like being on a tightrope, but hugging it tight, so tight as if you will never let go and that is what will save you. I felt the same when my dad was critically ill a few years prior-you don't allow yourself to project that life will cease but yet you know it may and the fact nips on your heels as you run on, believing in love and life. And this is the point where only you can choose what to see. Some people will need to stay; some will equally need to go. There is no wrong and no right. One parent may need one thing, and one another. Each may have regret afterwards, but that will vary massively on the outcome.


We were the lucky ones.


One minute thirty seconds.


It could have been so much longer.


It could have been so much quicker.


It could have been a different story altogether.

Could I do it again? I hope against hope I will never ever have to. It is not something I could ever forward-plan. Ours was a one-off episode and thankfully Wriggles has never been that severely ill again. Yes, poorly, yes needing support, but never like that. Watching and listening to stories of families that live that state for infinitely longer was utterly humbling. Both the children and their parents have strength beyond anything you imagine when your child is first placed in your arms, or through an incubator porthole. Love is a force that truly is incredible.