School holidays - Day two and I already want to kill myself.

We've been patching Matthew's left eye, on his Opthalmologists instructions. It's not going well. He can't see a fucking thing out of his right eye with his left one patched and so far, I have not been able to come up with one single activity he can actually see enough do to while away the hours.



My heart is breaking for him. And please - don't post telling me the good Lord above wouldn't give me more than I can handle, because sometimes he just fucking well does.

...cast off!

Waiting patiently to be called...

One final photo of his cast for prosperity.

The saga is finally over. Last Tuesday Matthew went back in to hospital to have the wires removed from his elbow and his cast removed for good. It was a really long day. His surgeon had called to tell us he wouldn't be taken to surgery until at least 12pm but of course the hospital still wanted us there by 7am for admission. Luckily Matthew was allowed to have breakfast at 6am - he didn't end up going to theatre until nearly 1.30pm. The poor little bloke was starving. He's normally pretty patient and tolerant of inconveniences like that but it really was starting to take its toll on both of us.

The surgery went well. He was only under for about 40 minutes but it took a long time once we was back on the ward to wake up and get moving. We didn't end up getting home until well after 7pm that night. It was a long day and one I think he is glad is now behind him. He can move his arm well now and there isn't any pain but he still can't straighten it right out. His surgeon says he will do so in his own time. For now, he is pleased to be back riding his bike but has assured me tree climbing is off the agenda. Good man...

Opthalmologist # 4 & Rhuematologist

Matthew had his review on Tuesday with both his Opthalmologist and his Rheumatologist.

Rheumatologist

Brilliant results. Matty currently isn’t showing signs of swelling, warmth or pain in any joints at all. He’s got a good range of movement in all his joints although the muscles on the back of his thigh (hamstring, I think – Dr Jenn will be sure to correct me if I’m wrong…) are still a bit tight but hopefully the stretching he does at TKD will help. Or he could just be like his parents and not particularly flexible. Even in my most active & sporty days, I don’t ever recall not be able to touch my toes as being a problem.

Anyway, this news thrilled me. It will be the first winter since 2005 that he has been pain free. Amazing stuff and long may it continue.

Follow up – 6 months (15 December)

Opthalmologist

Left eye -6/6 (perfect), cataract stable Right eye - 6/12 good, but not great.

This is so frustrating. No matter what we do, we just can’t seem to get fantastic vision from his right eye. I don’t actually ever notice that he has a vision problem – when he is using both eyes he compensates remarkably well and there isn’t much he can’t see, but when his right eye is isolated, it is obvious that there is a problem.

There is now no reason he shouldn’t be getting better vision from that eye and Dr D thinks perhaps his left eye is over compensating, which means his right eye is becoming slack. Sooo, back to patching the left eye over the school holidays to force the right back in to action. Matthew is not a happy camper. He hates this game immensely and I completely understand why.

It’s going to be a miserable couple of weeks. :(

Follow up- 6 weeks (28 July).

Cast on...

and back to school tomorrow!

Broken wing

My poor boy has broken his arm. He fell out of a tree he was climbing at school on Monday morning. He did a spectacular job of it - the red circle on xray below shows the bit that is broken. It should be over in the space where the blue arrow is pointing.


Thankfully I was just at home when the school called me. I got there quickly and asked them to call the ambulance for him. There was no way in the world I'd have been able to move him, he was in too much pain. He was so brave - I can only imagine how much it would have hurt and how scared he would have been but he did nothing more than a bit of a cry when the pain got too bad.

The ambulance took him straight to the hospital while I raced Ryan home to stay with Tom's parents (who incidently deserve a medal for all the times they have come to our rescue lately). When I got to the hospital, Matthew was still holding it all together. I thought going by himself in the ambulance may have freaked him out a bit but he was fine. After they did the x-ray they warmed me that he would be taken to surgery to have it repaired. I was thrilled to hear that the orthapeadic surgeon was they same surgeon who did FIL's hip replacement last October - he is a great doctor and a lovely bloke to boot. Matthew had actually met him in the past so that helped a lot to ease the fear.

Matty finally made it to surgery at about 4.30pm. He is now sporting a couple of pins in his elbow to hold it all together and will need another anaesthetic in a few weeks time to remove the pins once his arm has healed. For now, he is wearing a blackslab and will have his proper fibreglass cast put on next Monday. I think he's looking forward to the kids at school being able to sign it.

Here he is in the emergency room, looking fairly unhappy. Note the unnatural point of his elbow. Ugh.

Sleeping peacefully after surgery.

He hasn't been in too much pain since he has been home. He was very tired and worn out the first day but is now just going about things with surprising ease.

Kids are amazing - and you in particular young man, are the bravest of them all. xx

Hi there, remember me?

Wow, you know you've been neglecting your blog when even your husband starts making sarcastic comments. Sorry for the delay, friends and neighbours (yeah, all three of you...lol) - I'll try to make more of an effort.

So, first things first - Matthew's follow up Opthalmologist appointment.

Finally, we got some good news. The long month of removing and inserting his lens paid off - the fluid was right down. Unfortunately we didn't get an accurate measure of his vision in that eye as his lens wasn't in but from what we could tell, it seemed to be much better than in previous visits. Fingers crossed anyway. Medications will stay the same (unfortunately) for another 5 weeks, just to make sure that the fluid has settled.

Follow-up appointment 16 June.

~~~

Next to Ryan. On Friday Ry had his visit to hospital to have his teeth dramas sorted. I made the trek in alone as Tom had to get Matthew off to school. The day went as well as it ever can when you have to watch your child have a general anaesthetic. Surely that has to be up there as one of lifes most distressing events. Tom had the task of being with Matthew when he had his surgery, so this was all new to me and it's not an experience I wish to repeat anytime in the near future. About 30 minutes in to his procedure, the dentist called me from theatre to tell me that he'd done x-rays of Ryan's front damaged tooth and found a small dark spot that could either be:

a). a possible infection starting; or
b). just general damage to the nerve which means he may lose his tooth earlier than normal.

The choice I had to make was whether to extract the tooth while he was under a GA to eliminate any future problems or leave it alone and take the chance that the spot may not be an infection. Given that I'm not exactly reknown for my decision-making abilities at the best of times, I wasn't sure which way to go. I had to quickly ring Tom to see what he thought and after much deliberation, we decided against the extraction. Ryan's dentist did make it clear he was happy to go either way but I've been beating myself up about it since. Should we have removed it just to be on the safe side & avoid having to have another GA? I don't know. If I had longer to think about it I may have chosen to extract but I can't be certain. Argh, this parenting gig is tough sometimes - I felt like someone had asked me if they could lop off one of his legs.

Anyway... Have some photos. Here he is in recovery munching on sandwiches, ice cream, jelly & lemonade. He thought the lemonade part was just fantastic. Cute.

So anyway, as if the day wasn't harrowing enough for his poor parents, the good Lord above decided to throw in a dose of croup as well, just for shits and giggles no doubt. Now, this house hasn't been without a fresh bottle of Redipred since 2003 yet somehow he managed to pick a night where I was needing to get a new script filled. He was quite bad too, I guess being intubated didn't help at all and for a while there I thought we would be heading back to the hospital. We managed to get through the worst of it by sitting in the bathroom with the shower running and then pulling the humidifier out of retirement but it was quite hairy for a while there. I'm well armed for tonight - I have more drugs than you can poke sticks at.

Opthalmologist appt #3

I've missed an appointment somewhere. Just to recap, after not so great news in January Matthew had a follow up appointment in February, which was a bit of a non-event. The fluid in his eye was down a little bit so we were keep meds the same, to be reviewed in April, which leads me to today's appointment.

Left eye -6/6 (perfect), cataract stable
Right eye - 6/36 Not good, that's only the second line of the eye chart. A scan showed there is still fluid on his retina.

Meds: Dr D wants to trial a stronger topical steriod for his right eye for the next four weeks. All his other medication will stay the same. The new drop will have to go in 4 times a day and his contact lens will have to be removed each time. Oh, he's just going to love that news...

Medication:
Flucon - ceased
Prednefrin Forte - 4x per day, right eye
Homatropine - One drop every 2nd day both eyes
Redipred - 1ml every 2nd day
Methotrexate - 10mg per week
Naprosyn - 250mg per day
Folate - 50mg per day

Follow up 4 weeks (12 May 2009)

Prematurity,the gift that keeps on giving

A few weeks ago, Ryan elegantly lept off the lounge chair and managed to land squarely on his front right top tooth - a skillful maneuvere if I do say so myself. We've watched it over the last couple of weeks change from bright white to a nice off white before it decided to settle on a fetching shade of grey. I'd also noticed that one of his back teeth had something resembling what my untrained eye thought to be a hole. Obviously a trip to the dentist was in order.

The general dentist we see caught sight of his front tooth and decided that we'd need to add a Peadiatric Dentist to our ever expanding list of specialists. Fantastic. The PD took one look in Ryan's mouth and quickly ran in to another room to order that BMW he's had his on eye on for a while (well, not really but I'm sure he did it as soon as we'd left...) The official diagnosis is yes, it is a hole - Ry apparently has a weak spot on his molars, most likely caused by his prematurity.

So now I need to make an appointment for him to have a general anaesthetic to have his cavity filled, his 3 other molars "sealed" to prevent them developing holes and possibly, depending on how much worse his front tooth is in 6 weeks time, root canal on his damaged front tooth.

I hope the tooth fairy reimburses us substantially when the time comes because God knows our health insurance isn't being all that generous.

Appointment #1 - Opthalmologist

I had hoped that 2009 would be a year of fantastic news, instead we've been dealt a blow first up. Results of his latest eye exam are:

Left eye– 6/6 (perfect vision!)
Right eye – 6/24 (dismal)

This result from his right eye really floored me. I was keen to see how well he was going after his last appointment as he'd gone very well with his lens these last few weeks. He has worn it almost non-stop and it seemed so settled. I wasn't quite expecting 6/6 vision but I had hoped for pretty close. 6/24 is barely the third top line on the eye chart.

Dr D was also stumped and after examining him thoroughly, discovered Matthew is retaining fluid at the back of his eye. Again. This isn't the first time - almost 12 months ago he experienced the same problem after we dropped his steriod dose and he recovered quickly once the steriods were increased. The problem this time is that his dosage hasn't changed since that last increase. She has now doubled his dose of Redipred and we now cross our fingers and hope. If this intensive burst of oral steriods doesn't work, he will need steriod injections in his eye.

Meds- Drops unchanged. Naprosyn unchanged. Redipred - 2ml for one week, 1.5ml for one week, 1ml for one week.
Follow up – 3 weeks.

Rheumatologist appointment

Wow - 6 months goes so fast.

Matthew's appointment went very well, which we expected. It's been a long time since Matthew has complained of any pain or stiffness and we've not noticed any swelling or warmth from his joints. Dr J can't find any sign of joint inflammation either and Matthew still has good range of movement from all his joints.

His ankles are rolling in quite significantly though, which Dr J doesn't believe to be a major issue. When I questioned it, he did say I could see a podiatrist if I wanted and they would no doubt prescribe some orthotics for him but am reluctant to do so at this point. He is already very aware that he has limitations and resents the addition of the contact lens to his life - I'm not sure I can bring myself to saddle him with another reason to feel different.

Next follow-up - June 2009.

Opthalmologist appointment - October

I’m four days late with this post but I’m sure you all know how that old chestnut goes.

Left eye – cataract still stable (nothing short of a miracle)
Right eye – stable
General sight – 6/12 Right eye, 6/9+1 Left eye (down from last quarter)
Meds- no change
Follow up – 12 weeks (12 January 2009)

This is an absolutely brilliant result. Last visit the opthal reduced the topical steroids Matthew has been on in an attempt to begin weaning him off them altogether. The steroids are such a catch-22 situation. They are controlling his inflammation wonderfully but one of the side effects of long term steroid use, is co-incidentally, cataracts. It would almost be funny, if of course I could bring myself to laugh about it that is. For such a long time we’d kept the recipe the same because that cataract in his left eye was remaining stable, which is the goal but it was suspected that this dramatic reduction of meds would shake things up a little. It didn’t. It is truly unbelievable. Now, if only we can keep this pattern going for another 2 years…

The only downside of this visit was the small slip in his eyesight. We’ve not had a good three months, contact lens wise. Matthew had lots of infections and his lens has just generally been unsettled and irritable. We’ve been back to his optometrist, who claims that the lens is fine so why it has been such a drama lately still remains a mystery. Hopefully, with a bit of perseverance (and maybe just a little bit of bribery) we can push on with it and overcome the hassles. How fabulous would it be to see (ha!) 6/6 vision in the New Year?

$28.00

It took the Optometrist 10 minutes (+ 15 minutes waiting) to check Matthew's eye (yes, singular) tell me the focus of his lens is perfect, the fit is perfect and he'll see him again in 6 months. Money well spent, you think? Well, you'd be wrong. The appointment was completely bulk billed.

The $28.00 was for the fucking parking.

Breathing easy... for now

Opthalmologist
Left eye - Marvellous
Right eye - Marvellous
General sight - 6/12 Right eye, 6/6 Left eye.
Meds - eek, complicated change.
Follow up 12 weeks.

Medication:
Maxidex - Once per day in right eye for 1 month, then change to Flucon
Homatropine - One drop every 2nd day both eyes
Flucon - cease drops in Left eye

Redipred - 1ml every 2nd day
Methotrexate - 10mg per week
Naprosyn - 250mg per day
Folate - 50mg per day

Phew. I think that's it. The next review is going to be hairy though. Because Matthew is responding so well to his current cocktail of drugs it is now time to try and ease him off some of the topical steriods (ie eye drops he is on). Firstly dragging out his Maxidex to every second day, then reducing him to a lower strength steroid (Flucon). The Flucon has been stopped altogether in his right eye. (Breath Shannon...) In the event that he responds well to this new regime, we can in time look at getting him off the more toxic drugs like Methotrexate. If he doesn't respond well, well fuck, I just don't know... Lets not go there right now, okay?

Anyway, all that aside, it was a great review. Sometimes it's easy to lose track of why we are subjecting him to so many irritating little procedures on a daily basis so it's nice to be able to look back and see a result. Keeps you motivated for the next 3 months. Next challenge, to keep the goddamn contact lens in his eye, instead of in a container of saline on the microwave...

Suddenly nervous

It's the eve of Matthew's opthalmologist appointment again - the first time since we went 12 weeks ago. Last time we had a long break like this between visits his eyes went to hell in a handbasket. His cataract was completely occluding his vision, inflammation in his eye was out of control, he needed surgery immediately & lots of horrible, horrible phrases like "blindness", "glaucoma" & "losing his eye" were bandied about.

Please friends & neighbours, cross your fingers for a good report. Send vodka too if you have some spare. I'm a little jittery...

Appointments - part two

Amazing how quickly 8 weeks goes, isnt' it?

Opthalmologist
Left eye - cataract stable.
Right eye - inflammation & retinal swelling stable.
General sight - 6/9 Right eye, 6/6 Left eye.
Eye Pressure - well within normal range. (No glaucoma, thank Christ.)
Meds - no change.
Follow up 12 weeks.

Did you get that, friends & neighbours? I said, 12 weeks. This the longest we've gone without an opthal appointment in 2.5 years. Happy days indeed...

Appointments

The last two days have seen us catching up with three of our very best friends; Matthew's Opthalmologist, Matthew's Optometrist and Matthew's Rheumatologist. We also threw in an appointment with our local GP for good measure. I would hate for them to feel neglected.

Anyway, the results are in:

Opthalmologist
Left eye - cataract stable. Surgery avoided for at least another 8 weeks.
Right eye - inflammation & retinal swelling stable.
General sight - 6/12 Right eye, 6/6 Left eye.
No change in medication.
Follow up 8 weeks.

Optometrist
Contact Lens - fits perfectly. Many pats on his own back for being such a clever Optom. (insert eye rolling here). Dramas associated with inserting lens are fault of mother apparently. Note to self - must work on insertion technique.
Follow up 6 months.

Rheumatologist
Joints - wonderful!! No sign of swelling, warmth or inflammation in any joint. Almost full range of movement regained in knees/ankles. Naproxyn dose halved, Methotrexate dose reduced to 10mg per week.
Follow up 4 months.