Doctor Naiker examined her, and agreed that it wasn't normal for her toys till be this sick. Her chest is as wheezy as ever, and she still has a temperature. Combined with her refusal to drink, he thought the best thing to do was take her to emergency for a chest infection and some more tests.
I remembered that she had had that pesky piece of toast stuck in her palate not long before she got sick, and I started to wonder if maybe she had aspirated some of it after all. Perhaps she had pneumonia? I can't say I was overly worried though, I just wanted to know what we were dealing with so that we could fix it!
The emergency waiting room was packed when we arrived, not a good sign when you know your case isn't going to be treated as urgent. It was about half an hour before we were even triaged. Ellie was being really good though, especially considering she hadn't had her nap and she was sitting around in a strange place. Maybe hospitals feel like home to her by now?!
After just over an hour we were finally taken through to emergency and left in a room. Another 15 minutes later a doctor arrived. He listened to her chest and ordered an X-ray. He didn't ask about her history, but was aware of her cleft from the letter doctor Naiker had sent. I'm guessing he assumed that the cleft was her only issue. A nine-month-old shouldn't have that much medical history right?
Another hour or so later and it was time for Drew to take her through to X-ray. I hate holding the girls down for these things so X-rays and blood tests are Drew's job whenever he's available. Apparently she was pretty well behaved though, and they were back in 15 minutes. He said that the radiographer had mistakenly tried to compare her image to the one take shortly after birth, and he had to correct them that the first image wasn't relevant to this case.
When we were back in emergency a trainee came over to talk to us. He wasn't a doctor, he wasn't even a registrar, I'd overhead him talking to another staff member and saying he was just there to observe. So why he was attempting to diagnose my daughter I have no idea. He said that it appeared Ellie had bronchitis, and there was no treatment she could be given. He was going to send us home to wait it out.
Now, I'm pretty skeptical of most young doctors, but when a young doctor is diagnosing bronchitis my suspicion rises about a million-fold. This very same hospital mistakenly diagnosed Sophie with bronchitis in 2011 four times before it was discovered that she had pneumonia after I lost it and demanded they do more tests. So I really don't trust bronchitis as a diagnosis. It's the easy answer. It's the "wait and see" but we don't have time to wait and see with Ellie when she's been this sick for so long, and she's waiting for a life changing surgery.
I stayed calm, but made myself very clear. I told him he better be 110% sure, because the hospital had already screwed us over with that diagnosis in the past. I reminded him that it had been four weeks with no improvement, and suggested that he find someone who was a bit more qualified to take a look at our daughter before we were dismissed. I think I scared the poor young man. He scampered off very quickly, stuttering about checking with another doctor.
He came back with our first doctor, who took us in to an exam room. He explained that it did look like we were dealing with persistent bronchitis, but because of Ellie's cleft there was a risk that it could also be aspriated pneumonia as well, and he didn't feel comfortable sending us home until a paediatrician had taken a look at her scans. I was much, much happier with that decision. I didn't apologise for making a fuss - I will never apologise for doing what's right for my child - but I did explain again why I was so pushy, and he agreed that in Ellie's case bronchitis can't just be a guess.
20 minutes later a paediatrician arrived, and I like him immediately. He wasn't one we'd seen before, because the paediatrics clinic at the Mersey is staffed by locums who report back to the head of the department, doctor Funk. He asked a lot of questions about Ellie's history, and when we got to her meconium aspiration and being intubated for three days he stopped me.
When she was born our biggest concern was Ellie's haemoglobin levels. I barely even registered that she had inhaled meconium. Of course I knew that it was bad, but it didn't seem to be the most high-priority problem. So when we brought her home I forgot all about it. No one has mentioned it since, and I never think to bring it up when we're going through her history. It's just another one of those many problems that got in her way at birth and that she got through.
Apparently not though. The doctor explained that babies very rarely need to be intubated at all for meconium, and almost never for three days. Knowing that, the markings on her chest X-Ray became more serious. He believes that what hey can see on her scans is evidence of damage to her lungs. She most likely does have bronchitis, but because her lungs are weak it's far more dangerous.
He explained that Ellie almost certainly has asthma, and the wheezing will continue to happen indefinitely. Each time she gets a cold she'll be at risk of developing an infection, because her lungs aren't strong enough to fight for themselves. And each infection will likely cause more damage. It's a devastating cycle. He let me listen to her chest, and the sounds in there were horrible. To think that my baby girl will have this happen for the rest of her life sucks frankly.
He also dropped another bombshell. Because her lungs are damaged and will continue to worsen each time she gets sick, she is a huge risk for anaesthetic. Every time they put her under there is a chance that her lungs won't cope. Yes, there's a risk for anyone who has anaesthetic, but Ellie's is much higher. It means that for longer procedures (like the palate repair of the bone graft) they will need to watch her extra closely for any changes.
Because most chest infections are viral rather than bacterial, they won't respond to antibiotics. Which doesn't leave us with a lot of options for treating Ellie when she gets sick and stopping the damage. Our best hope is cortisone steroids, which may or may not help to strengthen her lungs.
The doctor started her on twice daily flixotide, a medication she needs to inhale through a spacer morning and night. He said he couldn't be sure that it would work, because these cases will only respond to treatment maybe 50% of the time. But he felt more comfortable sending us home with something rather than nothing. He also told us what to look out for as signs things were getting worse, and that he would see her straight away in the paediatric clinic at any time so we don't have to come back through emergency.
We spent four and a half hours at the hospital. When I woke up this morning I was expecting to take Ellie tot he doctor, get some more antibiotics and have a normal day. Instead, I got an afternoon at emergency and a diagnosis that will keep us coming out there. In the car on the way home I was stunned, and I still am tonight.
What did Ellie do to deserve all of these challenges that keep getting in her way? When will she catch a break? And what will this mean for her long term health? So many questions, and no answers in sight.
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