Ivy slept through the night.
Oh. Yes. She. Did.
Okay, she woke a couple of times and they said there was one episode of apnoea… maybe. They were very non commital about it all.
But for all intensive purposes, she had a great night’s sleep and a great night’s sleep means no tonsilectomy. No tonsilectomy means another year of terrible chronic illness. The truth is, I’m not sure I can cope. There I said it. No super Mum living under this roof.
The nurse came in at 6am and little miss ‘I never sleep through the night’ was still asleep! She asked me if this was a usual night for Ivy. I didn’t know whether to laugh or cry.
Ummm, no, if this was a normal night, I would not be here having a sleep study, I would be at home with the other children. I would not have put my baby through electrodes being plastered on her scalp and all over her face. I would not have held her down while she screamed blue murder as the oximeter was applied to her toe or the nasal prongs under her nose.
To say I felt like a fool is an understatement. To say I was made to be a liar by my precious daughter, a bigger one.
So we scrub the plaster from her curls and pack ourselves up, hoping to scurry away with tails between legs but we are stopped by the nurse. Don’t worry she says, alot of patients sleep through the first time, it just means she’ll have to repeat the test.
I don’t think so.
We won’t have official results for eight weeks. EIGHT WEEKS! Lucky this isn’t life or death.
I inwardly laugh. Nothing happens quickly around here. Not. A. Thing.
As instructed, we phone the ENT doctor to give him initial results and to talk to him about whether we will go ahead with the adnoidectomy without the tonsilectomy.
I have already discussed this at length with the paediatrician, the afternoon before the study and have decided that it is better the devil you know than the one you don’t and Ivy and I will fumble through another horrible year of illness, wait it out until she is three, an age that is deemed acceptable to perform T & A’s with little risk of bleeding, rather than put the Ivygirl through two general anaesthetics in six months.
Just to add to my merriment David calls to tell me that the ENT doctor has closed his rooms until December.
Why would I expect anything more? (Insert crazy laugh of choice here).
At least the paed appointment was more productive.
So as not to bore you I will put it in point form.
Ivy’s last lot of bloods came back ok, except for her t cells. Which were low.
He explained this might indicate immune deficiency (yep, knew that already) but that her
Ig’s were all normal, so maybe not. He said;
Ivy was a complicated case,
he didn’t know what else to do for her at this stage and could we try
long term low dose antibiotics for a while. (hmmm, I thought we had been on long term antibiotics for oh, say, TWO YEARS already)!
Anyway, I said I would give it a go because
Ivy’s bowels and gut are now playing up with the high dose aggressive antibugs
Ivy has lost close to 700g (by hospital scales) in three weeks (600g by paeds scales).
She will only eat bland foods and that isn’t helping her to get better, it’s not even helping her bowels.
She is lethargic and miserable for alot of the time.
The paed’s reasoning is if we can keep infection at bay and not hope for a cure, (because he has seen the light and knows that is not likely to happen) for an extended amount of time, it might give her a chance to pick up her game, start to feel better and therefore give her an increase in appetite and allow her to put on the weight she has lost.
I’m all for wellness at this stage.
- Ivy has had blood tests again (results pending)
- and stool samples have been sent too (pending)
- Low dose Erythromycin started yesterday
This afternoon, she is playing outside, in the grass with Noah and Maddy. It’s nice to hear her laughing for what seems like the first time in ages. She looks… small and tired but play and laughter has gotta be good. In anyone’s books.
As for me, I was as open and honest as I could be. I told him I didn’t know if I could do it for another year, watch Ivy struggle and be helpless in, well, helping her. Nurses and control freaks don’t like not being in control at all and I am both of those. He suggested we limp through 2008 together. Hmmm, I don’t know if I will hold my breath.
I’m thinking an increase in the crazy pills are in order.
I asked him about doctors being friends with clients and all the rest of that stuff that has been bubbling through my mind and blog of late but, as this post is so long, I might have to leave all that for another day.
Oh, pictures of Ivy during sleep study to follow just as soon as I work out how to download from my phone. My husband has seemed mysteriously absent for a large part of this month but I will hit him up for some much needed IT help soon.
* Edited to add, photos now up - thanks Dave, sorry for the poor phone camera quality.