Fools and liars.
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.
ARRRRRRGGGGHHHHH!
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.
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Ivy’s last lot of bloods came back ok, except for her t cells. Which were low.
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He explained this might indicate immune deficiency (yep, knew that already) but that her
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Ig’s were all normal, so maybe not. He said;
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Ivy was a complicated case,
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he didn’t know what else to do for her at this stage and could we try
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long term low dose antibiotics for a while. (hmmm, I thought we had been on long term antibiotics for oh, say, TWO YEARS already)!
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Anyway, I said I would give it a go because
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Ivy’s bowels and gut are now playing up with the high dose aggressive antibugs
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Ivy has lost close to 700g (by hospital scales) in three weeks (600g by paeds scales).
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She will only eat bland foods and that isn’t helping her to get better, it’s not even helping her bowels.
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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.
oh poor Ivy, I wish they could wave a magic wand and fix Ivy or at the very least give you some answers.
Comment by Trish — November 23, 2007 @ 6:14 pm
{Hugs} to you Tiff
Comment by Trish — November 23, 2007 @ 6:15 pm
Oh no! You go to all that effort and waiting for the sleep study and then she sleeps well. Horrible.
I truly hope she gets better soon, or at least improves a bit. It can’t be at all easy having to watch her be sick. Here’s hoping for some answers.
(((hugs for you)))
Comment by Veronica — November 23, 2007 @ 6:55 pm
That is such bad luck.
She couldn’t find all those sensor thingys comforting could she?
((hugs))
Comment by Cellobella — November 24, 2007 @ 12:39 am
Oh man. Come over here and I’ll bring her to my kid’s doc. Either that, or I’ll send you some wine.
Take it easy on yourself, friend. xoxo
Comment by MamaLee — November 24, 2007 @ 2:36 am
I feel for you guys right now. Stay positive.
Incidentally, I often find I sleep really well in hotel beds, could it be the hospital bed had the same effect on Ivy.
Would getting her a ‘new’ bed a home be an idea?
Sorry if that all just sounds thick.
Comment by Xbox4NappyRash — November 24, 2007 @ 4:30 am
I feel sooooooooo bad seeing those pictures of your precious little Ivy. I would bet anything she needs those adenoids out. If my son hadn’t had an MRI with PROOF they were blocking 90 percent of his nose, then I’m sure I would have had a tough time getting them out at two. I cannot express to you how much better he is now that they are out. I learned through my research that if the adenoids and tonsils do not immediately colonate with good beneficial bacteria, then sometimes they colonate with bad antibiotic resistant bacterial strains. Unfortunately, when that occurs they become enlarged and constantly seed the system with bad bacteria that they harbor. If this is what is going on with your daughter, that would explain her system constantly “fighting” off infection. It’s because the tonsils and adenoids themselves are chronically infected. By putting her on the low doses of antibiotics, that’s going to wipe out all the good bacteria in her system indiscriminately, in addition to breeding the antibiotic resistant strains since there will essentially be no good bacteria in her system to keep the bad in check. No good bacteria means she will also be lacking the essential bacteria in her gut to process food. It’s a vicious cycle. I was on it most of my childhood. I was extraordinarily sickly as a child and I was determined not to let my child get on the same merri-go-round.
I would push to get those adenoids out. I think your instincts are telling you to get them out and I think you are absolutely correct. Meanwhile, if you are going to keep her on a low dose of antibiotics, I would definitely be supplementing her with probiotics in between doses so she can digest, break down, and derive nutrients from her food.
I wish you the best of luck because I know how it is dealing with doctors and it’s really, really, really frustrating.
Hugs,
Michele
Comment by MicheleS — November 25, 2007 @ 12:13 pm