Tag Archives: starship children’s hospital

More Inches, Less Degrees

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Well, it’s been a few weeks since I last posted. There have been many times that I have had very good intentions about posting, but circumstances have always interfered just as I’ve been about to sit down and start writing… However this time I’ve managed to actually get as far as starting to type, so hopefully I’ll have managed to write up a post of sorts before the day is over. 🙂

I’m just over seven weeks post-op now, and feeling great! I personally think that the six week mark was when I stopped improving gradually… and improved in a dramatic way all at once. At about six weeks I was suddenly able to sit up for much longer without getting uncomfy, go pretty much all day without having to lie down (although I still usually have to have a short lie down around dinner time) and generally do things like normal again. I get barely any pain now, apart from an achy shoulder blade, which will hopefully resolve soon. The most I’ve had to do in terms  of pain-relief has been heat up my wheatie-bag and put it under my shoulder. So I still haven’t had any painkillers, even panadol, since about 3.5-ish weeks post-op. Yay!

I had a six-week post-op appointment up at Starship last Friday. That went really well, and everything is looking great! It was all pretty routine…. I had more xrays (oh, the joys of being saturated with radiation on a regular basis!), and then an appointment with my surgeon. We asked a few questions, he looked at my xrays and scar, and that was pretty much it. These post-op appointments are so much less stressful than the pre-op ones!

Probably the most exciting thing, in my opinion, was hearing how large my curve is now. To start with, it turns out that the xrays taken a few days before surgery (which I don’t think I have) showed that my curve had increased from about 88 degrees in October, to 95 degrees in December. So I was well and truly Right-Angle Girl! That was kind of scary, to be honest, and I’m glad I didn’t know that measurement before surgery! Anyway, my post-op curve now measures at…. wait for it…. a mere 25 degrees!! Honestly, I’m so happy. That’s a difference of 70 degreees – pretty amazing! Even with the anterior release that was originally planned I didn’t think it would be such a good correction, and so it was really amazing to learn that it had been corrected so much with just the posterior fusion. Thank you, Mr. Crawford!!

Here are the xrays I had taken last week. You can see from the side view how large the screws are – it’s a little scary to think of them being inside me! You can also see that my spine is still a little rotated, but again it’s a huge correction. I thought that I’d still have some sort of rib hump, but honestly, I can barely see anything. It certainly isn’t noticeable, and that makes me very happy. 🙂

Look at those screws and hooks!

I really want to post a picture of my scar, but that’s going to have to wait for a little while. I mentioned in my last post that the scar seemed to be widening a little at the top – not a huge amount, but enough to not look as nice as the rest of the scar. We asked about that at my appointment, and the nurse showed Mum how to put special tape down the length of the scar, and kind of pull it together. I have to keep that on for three months, changing it once a week. I honestly didn’t think it would make a huge difference. I could see how it would stop the top from widening any more than it already had, but I thought that it wouldn’t make it any thinner. Well, Mum changed the top bit of tape the next day (we’d been told to do this), and she nearly squealed with excitement. She said that, after just one day, it already looked so much better and thinner than before! I can’t wait to see what it looks like after one week of being on. 🙂 We might take some photos when Mum changes the tape on Friday, and if we do I’ll post them here.

Here’s an interesting fact: this time last year, I didn’t know I had scoliosis. I was making many plans for the coming year, and I can definitely say that none of them involved having a spinal fusion! My year turned out a lot different to how I’d planned it. But I’m glad it happened. (Although I’m not saying that I’d want to do it again!) I think this whole experience has made me a lot more relaxed about letting things happen. I’m currently  planning things for this year ahead, but I’m now aware that circumstances can change quickly, and so ultimately I’m trusting that God will help me make the right choices, and also help me not to panic if things don’t happen quite how I meant them to.

Home Sweet Home

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Sorry for the lateness of this post. I don’t have any particularly good excuses – just that I’ve been quite tired. (:

So I’m home! Just being back home has made me feel heaps better, I think, and it’s been really nice to sleep in my own bed again and have all my books and things handy.

The trip home went pretty well. It took almost two hours exactly from the time we left the hospital gates to when the van pulled up in front of our house. It was the longest I had (and still have) sat up, and I was very relieved when it was all over.

I got discharged at about lunchtime on Tuesday. We decided that the best place for me to sit in the van was the jockey seat in the middle row, which is big and reasonably comfy, and which can lean back. Mum and Abby wedged me in with lots of pillows and a lumbar roll, and we set off.

wearing real clothes again!

It wasn’t exactly comfortable in the van, but it wasn’t painful either, and so I was able to have a little rest. We stopped at Pokeno, and Dad and the girls went off to get an icecream (of course), while I had some Panadol.

yay for powerade and painkillers!

That was the only stop we made, and so the last bit of the trip was the longest. I was getting a little uncomfortable towards the end, and I was very glad when we finally reached home. I managed to make it to my bedroom, and collapsed into bed, where I stayed until dinner. 🙂

I’ve been feeling better every day. I still get tired very quickly, but I’m able to sit up fairly comfortably, and I’ve been trying to get up and walk as much as I can. I’m spending a lot of time lying on the sofa in the living room reading books, and as that’s pretty much my idea of a perfect existence, I’m quite happy! In terms of painkillers, Mum has made up a schedule, and I’ve basically been taking them when they’re due. I’m still on Tramadol (three times a day), Panadol and ibuprofen. The aim is to eventually just get down to Panadol, and so far I’ve skipped a few ibuprofen doses successfully. I don’t want to start cutting down too soon, but if I can get off the ibuprofen as soon as possible, that would be good.

Although I’m glad to be home, I really didn’t hate being in hospital. Everybody up at Starship was really nice, and Mum and I felt very well looked after. It was a very positive experience, and I’m so glad that there is such a wonderful children’s hospital available here in New Zealand.

I’m going to the GP on Friday to have my dressing changed. Hopefully Mum will be able to take a few photos, and I might be able to post some pictures of my scar. (Not gory ones, I promise. It should be looking lovely by now!)

One Sleep To Go

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Today is Day Six post-op – and I’m feeling 100% better than I was even yesterday. Yesterday (Sunday) was actually a bit of a down day for me. I slept through nearly the whole night before, which was great in terms of getting a good night’s sleep, but that meant that I woke up very sore, and it took pretty much all day for the pain-killers to catch up with that. I had some visitors, which was lovely, but I was very tired by the end of the day. I really wanted to do lots of sitting and walking yesterday to gear up for the trip home, but I was too tired and sore to do that. I was also moved from my single room into a four-bed room yesterday, which was a bit of a shame for Mum, as now she gets to sleep on a mattress on the floor as opposed to the pull-down bed in the other room. However, the one other person in this room was discharged this morning, so it’s ended up that I’m by myself again!

So yesterday wasn’t that great. But today has been a completely different story! Here’s a list of all the things I’ve done today:

  • Sat in my chair for an hour without a break. This was a very big achievement for me, and I’m super proud that I finally managed it. I also sat up  quite a few other times, but they were in shorter bursts.

Sitting up for breakfast!

  • Walked right down to the end of the ward and then up and down the flight of stairs. I did this twice – once in the morning with the physio, and once after dinner with Mum. Walking has become so much easier today, and I’m actually finding it almost more comfortable than sitting or even lying down.

Conquering the stairs

  • Had a proper shower and washed my hair. It felt so, so, so good to finally have a real shower,  instead of just using a wet flannel and dry shampoo and I actually felt even better than before after I’d done that.
  • Not come close to fainting, or even feeling dizzy. This is also a big achievement for me, and it has come none too soon in my opinion.
  • And the last thing – I’ve been told that I can go home tomorrow! I can’t wait to sleep in my own bed and eat real food again. This time yesterday I wouldn’t have believed that I’d be okay to go home on Tuesday, but today has convinced me that that can happen. Sitting up for the almost 2 hour trip home will still be a challenge, but I’m pretty sure that I’ll be alright.

So I’m pretty excited. Home – here I come!

Small Steps Forward

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Day 2 – this is the one which has a reputation for being the worst: the really heavy-duty drugs from the surgery and immediate post-operative period are starting to wear off, and the physiotherapists are keen to see good progress in the sitting, standing and walking departments; the patient is encouraged to drink and gradually build up to eating soft foods, and the patient’s insides do not wish to cooperate 🙂

Ruth has been aware of this for months, having done lots of very thorough research.  She is now in a position to report that the rumours are true, but that in her case, she has not found them to be quite as bad as she expected.

Ruth trying very hard to achieve her goal of sitting in a chair for 30 minutes

Today she has sat out of bed twice and walked around the bed once.  When she stands up, she seems very straight and tall.  She says she feels as if her back is heavy and off-balance, but in reality her posture is perfect; it will no doubt take some time to adjust to the new situation 🙂

The upside of having lots of blood tests Dorothy the Dinosaur and Wiggles bandaids.-

The decision was made today to give Ruth a blood transfusion, which is still in progress.  She is already looking much better and feeling much less tired and nauseated.

Gradually various tubes and pieces of equipment are being removed, which is making it easier for Ruth to move around in bed.

Her surgeon has just been in to visit and is very pleased with her progress.  He has told Ruth that it was a difficult curve to correct, but he is glad he was able to do it without the anterior release he was originally planning.  So are we; seeing the huge effects the surgery has had on her whole body, we are thankful that she hasn’t had to also contend with chest and lung issues.

Today was a real family day here:  Ruth’s sister Sarah and her husband and two children came up for the day from Hamilton, and her sister Elisabeth and her husband visited, too.  The two brothers-in-law took themselves into the city to the movies, the sisters all spent time together, and the little ones enjoyed the atmosphere at the hospital.  Starship is a great place for children – playgrounds, toys, lots to look at and things to do.  Perhaps the most exciting thing for the 3-year-old was a trip to the Auckland Zoo with Grandpa and Aunty Becky.  Ronald McDonald House organises a free weekly bus trip to the Zoo for families.  Despite the fact that it was raining, they all had a great time.

It’s a pity they weren’t here yesterday when Ruth had a visit from the Clown Doctors, who managed to make us laugh in spite of ourselves.

The Clown Doctors visiting Ruth

Thanks again for all your messages.  I have been reading them out to Ruth, as she hasn’t been able to focus well on reading anything, but she is hoping to be able to get back onto the laptop tomorrow, so the next post will probably be one from the girl herself.

Right-Angle Girl: Patient

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I’ve been admitted to Starship Hospital, and everything is all go for tomorrow morning! Exciting? Somewhat. Slightly terrifying? A bit. But, surprisingly, I am not particularly nervous. I’m not sure when this will change, but I suppose it’s good to enjoy the calm while I can!

My Friday appointment went very well, and it was all quite straightforward. The only exciting thing that happened was that I had a traction xray. The name really describes it all. Basically, I lay down on the xray table, Mum (who was allowed to participate, provided she wore a lead apron thingy) held my hips down so I wouldn’t slide off the table, and one of the nurses (who also wore a lead apron, plus lead oven-mitt style gloves) held firmly under my chin… and pulled. When I was as stretched out as the nurse could get me, they took an xray. Although it wasn’t painful, I wouldn’t  describe it as an experience that I’m anxious to repeat again. Ever. 🙂

Just prior to having my head nearly pulled off...

So today (Monday), I’ve been admitted to Ward 24a. I’ve got a single room which is extremely nice, especially as it means that Mum gets a fold-down bed to sleep on tonight, as opposed to a mattress on the floor. I may not get to come back to this room after my night in ICU tomorrow, so I’ll enjoy the privacy while I’ve got it!

There's a Smurf on the door of my room. A grumpy Smurf.

So far, I’ve had a lovely nurse come and ask me lots of questions and fill out charts; I’ve been given my hospital wristband; I’ve had a tour of the ward; I’ve met one of the anaesthetists and signed the anaesthetic consent form; I’ve met one of the physiotherapists, who has basically told me that she’s going to make me do painful things after surgery (such as sitting up, standing and walking); I’ve been given two special shower scrubs to use tonight and tomorrow morning, plus a beautiful *cough* green hospital gown to put on tomorrow; and I’ve had blood taken. Dad nearly fainted when he saw the nurse bring over the needle, so he went and sat down in the waiting area with Abby. I, however, was very brave. And I got a Dorothy the Dinosaur bandaid. Right now I’m waiting for one of the registrars to come around and get Mum and I to both sign the surgical consent form.

I’ll be taken down to theatre at 7:30-ish tomorrow, which is a little earlier than I thought originally, but it will be good to get on with things quickly rather than waiting around and getting more and more nervous. This means that Dad, Becky and Abby will have to get up rather early to come and say good bye. They are settling in at Ronald McDonald House at the moment. The House on the hospital grounds is actually full at the moment, so they’ve been sent down to the part that is somewhere on Grafton Road. They are still allowed to come and park for free up at the hospital, though, so it should still be very convenient.

Okay… the registrar just came down and explained what would happen during surgery, and also outlined the risks. Mum and I have signed the consent form, and so it’s all officially happening.

The rest of my family are off having dinner – I’ve already had my first hospital dinner, so I’m staying put in my room.

The person who really needs the most prayer at the moment is Becky. She’s very anxious and teary, and its hard to explain everything so she’ll be reassured. She’s also driving us all a bit crazy with all her worrying about  what is going to happen each day…

I think I’ll finish now, and maybe read one of my new Christmas present books. Hopefully I’ll be able to get a good night’s sleep – we’ve all got an early start tomorrow!

Thank you so much for all your prayers and support. I’m definitely not looking forward to the next few days, but I know that God is in control of all things, and He will help all of us through whatever may happen.

One Week To Go

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This time next week, my surgery will hopefully be over. After such a long time waiting (I began a countdown chart over eight weeks ago), it’s a bit weird thinking that there aren’t many days left now before I’ll be straight again! (Or at least straighter.) Because it all feels a bit unreal, I’m not actually nervous. I’m sure that will change at some point, though, so I’ll enjoy it while I can!

I can’t really imagine not being wonky any more. Because my spine’s curve has happened gradually, I’ve just got used to how it feels to be crooked all the time, and I can’t even really remember what it feels like to stand straight, or not have my ribs sticking out on one side. It will definitely be strange when all that is changed. I might even miss feeling crooked! (Although I’m pretty sure I won’t miss my rib hump…)

Anyway! Mum suggested that I should show you all some photos of my back. We’ve been taking photos every few months, which has made it easier to see how much the curve has progressed. I won’t put them all up, but here are three photos, which should give you an idea of what it all looks like.

Admittedly the photos are not all from exactly the same angles, but they should still give you a general impression of how it is.

I’m afraid that there isn’t anything particularly interesting to share on here right now. I’ve got one last appointment up at Starship on Friday morning, and then I’ll be admitted next Monday afternoon, with surgery the next morning. Hopefully we’ll be able to find out a few things on Friday, such as how easy it will be to access the internet for Mum to post updates and such.

Thank you all so much for your comments on my first post. They have been really encouraging. It’s so amazing to know that there are so many people supporting and praying for me and my family. Thank you! ♥

I will probably put another post up after my appointment on Friday, but we are pretty busy from then on, so I won’t make any rash promises!

A Rather Feeble Introductory Post

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If you are reading this, you are probably either one of my family, or a friend. Either way, you probably know already what this blog is about. But, if you don’t know me personally, or you don’t have any idea what this blog is about, then read on.

I was diagnosed with scoliosis in February this year.

Although for the last month or two beforehand I had noticed that my waist and hips were uneven, I hadn’t really thought much of it, and it wasn’t until my mum saw my back one day that I really realised that there was a problem. Mum has mild scoliosis herself, so she knew what was wrong with my back. The GP confirmed that it was indeed scoliosis, and I quickly had xrays which were then sent on to Starship Children’s Hospital, and the scoliosis specialist there.

Despite the first batch of xrays being lost, I got an appointment for an MRI scan fairly quickly, mostly due to the fact that my mum kept on ringing the hospital up to remind them I was still waiting. We could see that my curve was progressing very quickly, and it was very difficult to wait patiently.

I had the MRI in April to confirm that there was no underlying cause for my scoliosis, and everything was fine. When the surgeon finally saw my xrays he put me on the Class A priority list, which made me feel pretty smug. At least we hadn’t been ringing up about nothing!

In late May, I finally got to see Mr Haemish Crawford, the scoliosis specialist up at Starship. He measured my curves at about 75 and 42 degrees, and told me that I would need surgery. This wasn’t really a surprise to me, as I had been doing a lot of research, and knew that my curves were pretty big. This is one of the xrays I had taken that day:

Once I knew I needed surgery, all I wanted to do was get on with it. Unfortunately, with the long waiting list for this type of surgery, nothing happens quickly, even though the surgeon had said that it would be this year sometime. At first we thought my surgery would be in October, and so I prepared myself for recovering in the fourth school term. However, my surgery is now scheduled instead for December 13. Although that is a bit later than we originally thought it would be, time has flown by, and it is now only 13 days until that date. I’m getting a bit nervous, but I’m still excited for the end result.

At my last appointment in October, my curve was measured at about 88 degrees, with fairly severe rotation. I actually have two curves, but the lower one is much more severe than the top, which is just a compensatory curve. This means that, when the bottom curve is straightened, the top one should straighten of its own accord. Because of the stiffness of my curve (which was shown on some side-bending xrays I had done), the surgeon is going to do two procedures instead of one. First of all he will go through my side (the anterior approach), remove a rib and collapse the lung on that side so he can get to the front of my spine, and then remove disc material from from the stiffest part of the curve, so that it will straighten more easily. After he has done that, he will then go through my back  and carry out a normal posterior fusion, probably from about T7 to L4.

So there are 13 days to go until surgery. I can’t wait… although, thinking about it, I’m actually dreading it all as well.