My husband seems to have bad karma when it comes to toasters. He destroyed our very expensive 11 year old Dualit toaster, that we were given as an engagement present, with a potato farl. Instead of using the toast tongs that were attached to the side of the toaster, he kept pushing on the lever handle more and more aggressively until said potato farl got mashed to a pulp and spread all over the toasting filaments. A classic example of when an obvious solution completely evades a rational, intelligent human being. I mention this because I’ve just toasted a crumpet and the toaster smoked like it was sending signals across the prairie. I looked inside the toaster to see there were cinders of various sizes inside the toaster causing said smoking. I then spent five minutes removing all crumbs and cinders from inside the toaster so that it will now not smoke. I have to add that that was the first time I had used the toaster this week. My husband uses it all the time.
I can’t blame my husband. It seems that there are solution evaders in all walks of life. The one that has really got my goat at the moment is doctors. Moo has had a tracheostomy since the day she was born. At first, it was clear that she needed one as she had absolutely no airway and, without it, she would die. Obvious solution. Over the years, however, she has improved to the point that she now wears a Passy Muir speaking and swallowing valve for up to 12 hours a day. In tracheostomy terms, this shows that she has a very good airway around her tracheostomy because those things are permanently closed and only open when she breathes in. They are very hard to tolerate if your airway is occluded. Each MLB (micro laryngo broncoscopy, the op she has every year to check her airway and see whether her trache is ready to come out) she has had over the last three years has shown no change whatsoever, despite her growth and the fact that her Pierre Robin (cleft, abnormally small jaw) sequence has self corrected and her jaw is now in the normal position. Each time, her consultant mentions that Moo’s mouth doesn’t open that wide and it is a hindrance.
After her last MLB, I started thinking. Could the fact that her jaw does not open that wide be the reason that they can’t see her trachea safely? If they can’t see her trachea safely, they can’t remove the trache because she is classified as unintubatable. If she was knocked unconscious without a trache, they could not guarantee they could intubate her and save her life so the tracheostomy has to stay put.
So I go to an appointment at the cleft clinic at Great Ormond Street, where all of Moo’s complicated care is, and mention this to the doctor. The doctor talks to the ENT registrar. The ENT registrar talks to me. It is possible to make a jaw open wider. It’s not easy and it doesn’t always work but it is possible. There is a potential problem with the larynx that would mean it would be pointless and, if Moo’s consultant thinks she has this problem, there is no point trying. He’ll talk to the consultant and get back to me. I get a call a couple of days ago and the consultant thinks that, actually, it’s worth trying.
Basically, after three years of no change, there is the chance that widening her mouth may result in her being able to be decannulated and get rid of the life threatening tracheostomy. Now, seriously, why has no one thought of that before? Doctors are so stretched that they see patients, deal with what they see and can treat but all thinking seems to stop there. Could there be a way around this problem, could there be something we could try to make things better?
When Moo was a baby, she could projectile vomit about 30 feet. It was impressive. She managed to vomit across a brand new Starbucks; the carpet, the coffee table and the brand new leather sofas. My NCT group were shocked. The Exorcist had nothing on this baby. It was evident from birth that something was going on when she ate. It started with her wiggling and looking uncomfortable. She had terrible wind. At three months, the vomiting started and just got worse and worse. At first, it was only a couple of times a day, then it was after every single feed. We would keep her quiet and still for an hour and a half and hope it would stay down. Sometimes, it did. St George’s diagnosed reflux, our local hospital agreed with them. She was on Domperidone, Ranitidine, Gaviscon; the maximum doses of all three. The vomiting continued. She had two 24 hour pH studies done, numerous barium swallows; all of which showed minimal reflux or none at all. The hospital insisted it must be reflux. She vomited on doctors and nurses and, even though the milk would look like it had come from straight out of the bottle an hour after being ingested, they still said it was reflux. My mother said “maybe she has an allergy”. I told her the doctors would have thought of that. I was recovering from my trauma and only after six months on medication did I feel like my normal self and started thinking about it. At which point, Moo had been on medication for 10 months, to no avail. Finally, I put my foot down and demanded that they try changing her milk. So she went on Nutramigen which improved things slightly. Then they changed her to Neocate which your body has to learn to digest because it is milk broken down to its amino acids. Ten days later, the exact time it takes for the body to learn to digest it, and Moo stopped vomiting, completely. The irony is that she grew out of her allergy eight months later.
The doctor said, “so Moo has a milk protein allergy”. Really?! No shit, Sherlock. You let her suffer for ten months without thinking about it. She was on seriously strong medication for no reason. The only reason they found out about her allergy is because I put my foot down.
My cousin has just had a baby. Said little dude is suffering with all manners of trapped wind. The story sounds familiar. Has he been tested for intolerance or allergy? Apparently not, as the doctors will only do that as a last resort. Is it just me or is that ten tonnes of stupid? A child may or may not have an allergy to milk but they’re going to make the child ingest it until they have tested every other avenue. Here’s an idea. Why not test for milk allergy or intolerance first, rule that out, then move onto reflux? To treat an allergy you change the milk, to treat reflux you have to dose the poor child up with meds and get the balance right. However, if a child has an allergy, no amount of medication (which costs the NHS thousands) is going to help.
The moral of this rant is really this: if you think you have an idea of how to solve a problem with your child and you are dealing with the establishment, speak up because, if it’s obvious, they won’t have thought of it. They simply don’t have the time to analyse and think about each and every case. And sometimes, the most obvious solutions are the ones that are missed completely.