Monday, November 19

Brick Wall (insert head here)

Today, we had our rescheduled MRI appointment after the last one (or two; I have lost count) were cancelled due to Wriggles being yet again too poorly. Over the weekend we have been seeing off a cold, but today she seemed much better and her numbers were all good so it looked all set to finally happen.

The only thing I had reservations about was it being done under sedative. We don't have a lot of experience with them, but the two or three times that we have ran into them, I know that it takes a lot to knock Wriggles out. Say, a general anaesthetic. In light of this, I mentioned it on multiple times leading up to today to a multitude of people who all nodded along. I also mentioned it today to those looking after us on the ward, the doctor in charge of liaising with the MRI team and anaesthetist if needed and the MRI department. Oh, it'll be fine they all said. We can give her two doses and nothing gets past that! they laughed. Ha ha ha.

So that is what they did. We took a heavy-eyed Wriggles up, popped some earphones on her to protect her ears, clipped a probe on her and turned the MRI on. Which is roughly where the trouble started. It soon became apparent, as I had suggested, that although she might be slightly sedated, she was nowhere near enough sedated to withstand an MRI safely and come out with effective data at the other end. Despite the fact she remained unconscious, she kicked, jerked, arched, screamed and threw herself around. In fact, if the nurse on-hand had not told anyone otherwise, both the MRI team and I would have thought she was fitting, not just fighting the sedative as she was. Even though I was assured it was just that, it was really distressing to watch and trying and comfort her (or even hold her, such was she lashing out and flinging herself around) so goodness knows how it was for her. It really shook me seeing her like it, especially as it continued once we were well clear of the MRI room and back safely on a bed heading back to the day unit. The parting words of the team were "I don't think a sedative is going to do the trick, why not mention a general anaesthetic next time?"

Luckily there wasn't a brick wall nearby to hit my head against or I would have. Several times.

Back on the ward, it took hours to get her to wake up. And even now, nearly ten hours since the dose was given she is clearly still half-under the effects and is too floppy to support herself. It is a shame that it didn't work on a stronger level in half the time! So a funny day all round. And not one I am laughing about. Since the summer when they started taking us seriously and actually noting things down and getting things done, they have been a lot better about listening. I just wish they had this time. I do see they had to try, rather than just steam-roller in with a general anaesthetic if not needed, but at the end of the day, I am my daughter's advocate and protector, and she has been put through a stressful day, a powerful drug (that worked in some ways too well and someways nowhere near well enough) and as she has very limited communication, I don't know how traumatic it was for her and if that will influence things to come. Hopefully because she was only semi-conscious it will seem like a bad dream, but either way it is not helping to make hospital visits easier.

Since the summer admission and the advent of tube-feeding, Wriggles' relationship to and with the hospital has changed. She has always been quite compliant and even when very poorly, cheered to see the nurses who all recognise her. Now, she is terrified of many people and bits of the building she recognises. Whereas before she would be transfixed by sats monitors and thermometers, she is now scared stiff and screams if someone goes near her with a blood pressure cuff-probably the least painful thing! Since the end of July, there has barely been two weeks between visits, be they admissions, clinics, routine check ups or scheduled tests. We have been there a lot. After tomorrow's sleep study (round 3), hopefully it will be a lot longer between visits but it is still going to be somewhere we will spend a chunk of time and we now have another attempt at an MRI to schedule in. 

One thing I worry about is that it will make her resent me, the amount I have to drag her (for good reason) to the hospital and subject her to the uncomfortable, the unpleasant and the downright horrible procedures. She isn't yet at the age to understand the reasoning behind going; far less health problems and some medical practises an adult has trouble grasping. All she knows is that I take her there and it is not nice. I often wonder if she will carry any of these early memories or a subconscious level of trauma or knowledge from it all, especially the longer this hospital-heavy period goes on and her awareness and understanding grows. Whereas in the earlier days she was a little baby who could be pacified, she is now a growing toddler and developing more complex feelings and perceptions everyday. Just because she herself has little speech, you only have to listen to some of her peers' expressions to realise the amount that toddlers do take in, and even if not grasp, process. I am so proud of how brave she is, but in the same breadth I worry that bravery pays a price.

So many people say in years to come, we will all sit down and laugh about it. I hope they are right, because right now laughing is the last thing on my mind and I'm pretty sure I can speak for my daughter on that subject too.

1 comment:

  1. Hell yeah, you've got every right to be angry. Professionals need to understand that when you are dealing with a child who has frequent admissions, it is essential that their emotional well being is taken seriously. Hospital is a hard and horrible place to be ALWAYS. I can't begin to imagine how you must be feeling to have your confidence and trust damaged in such a distressing way. I hope you find the strength to give them some feedback because its such a shame that one or a few doctors have impacted negatively on the relationship that you have built up with the team. Mutual respect and communication are not optional extras when they are dealing with YOUR child!!