Tuesday, 27 October 2015

It's time we had a little talk....

Dear Parents,
October is Down Syndrome Awareness month.

It is also:

 I'm also going to assume that you're aware about the people with Trisomy 21 who read, drive cars, have valid opinions, work regular jobs, get married, have children, graduate from university, generally carry on with life without any ado. Also, of course, I assume you're aware of the growing number of child and adult models and actors generally impressing people out there. 

I'm also assuming you to be aware of my opinion on the striped socks thing. 

What I am not going to assume, however, is that you are aware of the "oxygen mask" phenomenon.
This is the phenomenon well known to airline staff, the one where parents are so intent on getting their children's oxygen masks on that they don't get the oxygen they need, and everyone suffers, the child included. It's so important that they tell us every time we fly, and we listen and we say to ourselves, "of course, that makes perfect sense". And then we give birth to a child with health issues and do the exact opposite. 

When your child is born with health issues, you immediately consult your practitioner, and usually very specialised ones, to find out what needs to be done to prevent permanent damage to your child's health, such as brain damage, hearing loss or dying, for example. You don't think twice about it. Your needs are pushed aside. You're the big one, the fully grown one with functioning bone marrow and a fully formed heart and lungs. 

This is how it always goes, because we'd do it for any of our children in a time of crisis. The crisis is dealt with and you go back to a more relaxed pace (not that I'm insinuating that anyone's actually relaxing here) but it's just a bit back from frenetic racing around or intense standing still, constantly on your guard.

The last three years have been, in my house, a bit ridiculous. It started with the sudden turn in my husband's health when I was about 6 months pregnant with Jacinta (and being pregnant with two other children demanding your attention isn't fun and games to begin with), through her initial hospitalisation, through the 'let's keep the weight graph trending upwards' (breastfeed, express, tube feed, repeat, every three hours - with a 4-hour window at night) before her heart surgery, through the IAHP training and the attempts to get the household in the one place at the one time to get co-ordinated to start a program, through the constant vigilance while the bleeds and bruises and tiredness were showing her illness despite the Dr's reticence to put her through a blood test (ha ha, in hindsight), through the diagnosis and sudden admission and weeks on end in the hospital, the family separated more than ever before, having to sneak out for a couple of hours to be there for my middlest's first day of kinder, having to see my two older girls and husband off at the airport so they could represent us all at his brother's wedding in England, staying home for 9 months to avoid catching anything at a gathering or at the shops, through being told on the day we were released from our last leukaemia-related admission that she needed surgery before the end of the year, through the waiting and waiting, and getting pushed back and putting everything on the calendar in very light pencil because you just can't commit, through the winter admissions while she was struggling to breathe with a bit of croup, through the second heart surgery with its twists, turns and sleepless nights like never before. 

This all finished about 3 months ago, and I kind of feel like I'm still there, in all of it at once. 

The thing is, about a year ago I had a cold. Not that badly. I think I had one day which knocked me flat, but after that it was just a normal cold. That illness sapped my energy right out. It gave me dry eye also. I went to the Dr about the eyes and the tiredness a few months later and she wrote up the eye drops and said I was probably tired because I was still breastfeeding. I hadn't considered this, so I considered it. 

When you haven't got time to think, and keep forgetting to make your children's appointments, you have Buckley's chance (none) of getting any appointments booked for yourself. Having mental fog and tiredness doesn't help either. 

I got to a point of being sick of it and deciding to look for someone who could get to the bottom of it so I can sort it out. A friend recommended a Dr in New Zealand. I booked in for a phone call. There was a 2 month wait. I waited. We chatted and she suggested I see another Dr about an hour from me for bloods and then contact her again if I still wanted to see her. I booked in with that Dr. Another 2 month wait. I went along and she had some very interesting suggestions re my health issues and sent me for bloods. On my return a few weeks later I found that she was spot on, my zinc and B6 were super low, my iron wasn't brilliant, nor was my magnesium. I had also requested to be tested for a gene mutation called MTHFR and the bloods confirmed that I had it from both my parents, meaning that my ability to methylate folate (which bodies do) was impaired by 70% (and that's as badly as it can be). Bloods also showed that my adrenalin was basically nonexistent. (For this to show up on bloods means that your adrenal glands are in serious trouble.) 

I'm in the process now of supplementing to sort out these, which is tricky apparently, when you try to supplement zinc with poor adrenal function. There are good days and bad days....

Still, my situation is fairly ordinary. Another friend of mine was diagnosed recently with breast cancer - a really aggressive lump that blew up in size in the two weeks from seeing a Dr to getting it out. Thankfully it seems to be all out, but it's a scary situation. This is a Mum who's had a ridiculous amount to deal with, none of it medical, up late finishing documents for lawyers etc. 

There are several others I know of also who have had to rest their adrenals so they can begin to function again. These parents are just exhausted, maybe just from worry that they're not doing enough, maybe from staying up too late blogging or chatting with other parents on facebook, maybe from tension at home or trying to be the perfect mother to their other children, one who can do it all - because they always used to...

I know you are aware that your child is as unique, in all ways, as all children are. There is no one defining characteristic for all people with Trisomy 21, except that they have a trisomy on the 21st chromosome - and I don't know anyone carrying a copy of their genetic tests around to show people. 

I know you are aware that the possibilities for your child are endless, and the only definite thing limiting them is the same as for anyone else, the idea from their mind or someone around them that they are limited. 

Please also be aware that you have to apply your oxygen mask first. I'm not going to insult you by suggesting you need to go for a facial or some other 'me' time while your child sits there at home having not met his potential yet. I am suggesting though that you go and get a checkup. I am suggesting that you take care of your diet and draw a line in the sand at 11 - or even 10pm and go to bed. I am suggesting that you confront any issues you may be having with your partner, your friends, your life in general, and sort them out sooner rather than later. I am suggesting that you (perhaps bit by bit) regain control of your life and be the one in the driver's seat in whatever increasingly bigger way you can. 

If you've dropped the ball on your own basic wellbeing, now is the time to do something to sort it out. Not tomorrow, now. I give you permission. Don't be the guy who misses the signs and winds up so unwell your child can't have you around to take care of them. Be the healthy one, who goes on and on because they have a check now and then and make healthy life choices. 

Now, I'm off to look up Dysautonomia....


Sunday, 11 October 2015

Heart Surgery - Take #2

We didn't get cancelled.

In we all went, after the obligatory pre-op 5.30am shower and into clean clothes.
Reported in at 7am and went straight through to see the Anaesthetist. He spent a few minutes double-checking re her ongoing virus and declared that she would, indeed be ok for surgery.

Through we went, got a photo in her cute little surgical gown this time, after thorough antiseptic wiping of her skin. I got to go in with her this time so I gowned up too. It seems that once you've got into a habit of accompanying your child into the theatre for anaesthetising, it's something they're inclined to continue. They even let her take a toy in. Anything to keep the blood pressure down, I think!

And off we went, let the big girls have McDonalds for breakfast because it was there and we were all fasting! Our lovely brother and sister in law live nearby and kindly got up early to invite us over for tea and toast, so we happily hung out there for a bit. We had also been dangling the Aquarium carrot over the heads of the older two so that was on the list and also we found that there was a room at Ronald McDonald house, which we needed to claim by about midday.

So we dropped off our stuff, drove in to the aquarium, couldn't park very easily and it had got to 2pm already. I was getting toey since the anaesthetist had said the surgery would be at least 4 hours, rather than up to 7 or 8. We were at 6 hours at this point and I'd already accidentally missed one call from a private number which thankfully hadn't been the hospital.  I decided to drop my husband off with the big daughters and drive on back. That way I could express some breast milk to keep my supply up. I figured they'd put it down the nasogastric tube while in intensive care as well.

So with that done and dusted, about 3pm, I decided I really could not ignore the call of the Gianduja chocolate they sell at the Chocolate Box (who aren't paying me any money) any longer. It's my biggest chocolate weakness, and that's saying something. They sell it at the Women's, which is down the road from the Children's. So Izz was off for a walk. I'd stopped worrying that checking my phone every thirty seconds was abnormal so I had it in my hand the whole journey.

By the time I got up there, attained my quarry and was heading back it was 3.55 and I got the call. The surgeon was very brief.  It was a long surgery. The repair had to be done twice. The heart was now good. It wasn't perfect, but it was good. The recovery might be a little slower since it was long but it was all good. She'd be in intensive care in an hour or so.

I should have remembered that the last time he operated he told me that she'd be in intensive care in an hour or so. It was three hours that time until I saw her. Still, I killed an hour waiting in the right place this time and the rest of the family arrived. After a bit more than an hour I went up to intensive care and checked. No show. The lady on the desk said we'd probably see her go past, so we waited in a slightly different spot so both access doors from theatre were covered.

We saw a small infant's crib and I thought that was too small for Jacinta, but I gave it 10 minutes or so and checked. Nope. We went back and waited some more.  Then I went to the family lounge for a minute, during which time my eldest let herself into intensive care thinking I'd gone that way. She found out that Jacinta still hadn't come in. By this time it was well after 5.30. Finally at about 5.45 I saw a cot wheeled through and I figured that must be her.

I gave it 10 minutes and went up to confirm that it was her. The ward clerk said it was but said it'd be a while til she was ready for visitors. She said about 30 minutes and that she'd come and get us. We decided the girls were well and truly ready for bed so my husband took them back to our room at Ronald McDonald house. I waited some more. Finally, about 7.30 she was ready. (That's 3.5 hours after I got the phone call...it takes as long as it takes!)

She looked ok, considering.

Now this is the point in the narrative where I confess that I completely dropped the blogging ball.
I was writing this at Ronald McDonald house, I think. We were all staying there while she was in Intensive Care and then I moved out once she made it to the ward. I came down with a pretty nasty cold on about day 3 which took me about a week to recover from. She was sedated for about 5 days.

The trouble was that her lungs collapsed. Maybe it was one, or both, I don't remember. They checked the lovely suction bits and found haemophilus bacteria. They didn't mention which type. She was started on antibiotics and by day 5 they were able to take out the ventilation tube. The tricky thing with the sedation is that the morphine may have helped with the pain but had absolutely no sedative effect whatsoever. They had to sedate her with another drug, midazolam.

Now this is the kind of thing about which I am really ambivalent. I am really, really against the use of psychotropics on any member of my family. You would have to force me physically to agree, and I might still not agree. Except when we're dealing with the heart surgery, it's fairly life or death in a lot of places. When she was in the surgery I'm pretty sure (from a couple of comments made) that she had to be jumpstarted once or twice, and I have the feeling that once again they were not going for perfect in the end because they were just going for a living, breathing patient at the end of the operation. In intensive care there are a dozen syringe drivers going, with different meds at different doses and they have a routine, a system for how things happen and when. It pretty much runs like clockwork. Even the tricky ones have a system and a usual practice for handling the tricky bit.

In this kind of situation, you're looking at an error being potentially lethal. A wrong dose of one of these meds can cause brain damage etc. My working policy is 'Just don't mess with the cardiac unit, let them get on with it.' So I came in to find her on the hypnotic, midazolam, which is in fairly common use thesedays in dentistry, day procedures etc. to help the patient relax and to induce amnesia regarding the whole procedure.  Some people might prefer to forget, but the trouble with that is that when you want to use Dianetics to uncover past moments of pain and unconsciousness which might be negatively affecting your health or mental state, these obscured ones can be awfully tricky to locate.

So we spent a lot of very silent time in that room, for several days. Still holding her hand and stroking her gently when she needed us. She was in PICU for 4-5 days. One of her lungs had collapsed so she couldn't get off the ventilator very easily. It turned out she had a haemophilus infection in the lungs, which hadn't been causing an issue up to this point. (And since vaccination was never mentioned I have to assume it wasn't the HiB strain.)

So from Fri to Tues she stayed in PICU, doped to the eyeballs. We stayed in Ronald McDonald house and went to and fro. I came down with a super nasty cold, which I spent about 18 hours in bed fixing as best I could before she was sent to the ward. (Lots and lots of handwashing for the next few days.) On about day 5 they decided she was doing well enough to come off the ventilator (extubating, they call it) and they did this pretty fast. They disconnected the sedatives then whipped it out and got the nasal prongs on and crossed fingers that they would stay on. All went well and she got out for cuddles.

The recovery was slow. The main trouble was that she was doing fine, but they had to wean her off the morphine. The morphine was not sedating her though. It turns out that it's not uncommon for T21 patients to get hyper with morphine, rather than sleepy. So we had many nights of a morphine dose at bedtime and very little sleep whatsoever. The body can really react badly to going cold turkey so they had to keep giving it, even though she tolerated it so badly.

Mostly the admission was a lot of very little sleep. At least one night I gave up at 4am, turned on the movie channel and let her sit up watching TV while I attempted to sleep.

Then on about day 7 on the ward they decided that the ends of her wound were looking a bit wet and yucky so they took her back in for a debridement. I told the anaesthetists that she was not tolerating the morphine, so they went with fentanyl, which was 5x worse! After the fentanyl, and possibly because she was so angry at going back in again, she refused to talk to me. This is the first time ever that she has not been on speaking terms with me. It was scary!! I wasn't allowed to go near her.

Thankfully she was more herself after a sleep. After a day or so they let us wander the hospital a little.

That's orange juice - not coke!
They kept us in for a few more days on antibiotics for the yucky looking wound and finally sent us home at the end of the week - about day 15 all up. Meanwhile two friends of ours had also appeared on the list, been done, made it onto the ward and one had been discharged in about 5 days all up! (No fair!) The other also made it out within about 5 days or so,  just after us.

The physio at the hospital went from helping her with her chest recovery post-op to talking about her walking and even (though I told her it was not the plan and would not be necessary) phoned our early intervention and requested the physio come out to the house to see Jacinta (who was pretty much back to where she was before surgery already).  Thankfully the EI case manager was happy to stick to the original plan, especially since the last time the physio came it did not end well.

Walking, aaaand..... pigtails!! 

And so she's fully walking now. We're in a place where we're still on a 'just in case' dose of diuretic but sometimes I forget and I don't notice a difference so I'll be surprised if he keeps it up after our next cardiac visit. This place also enables us to think about the possible causes for the speech regression. We're getting an audiology check because the antibiotics may have caused some damage.

It's a little strange to be done. Ever since about September 2013 I've been on the lookout for physical symptoms and not making plans. Now there is no reason not to put things in pen on the calendar, and the calendar is fast filling up!!