You guys have helped me so much in the run up to Maddy's surgery, that I decided to keep a diary of her stay in hospital to help prepare anyone who may be facing the same op in the future.
Firstly, the aim of the surgery, as explained by Mr Tucker, was to correct the curve by around 50% and to achieve a proper alignment of the shoulders, hips, etc so that any future growth is in the right direction. The rod will be lengthened every 6 months. They will try to obtain the best possible correction during the last operation when the spine is fused.
DAY 1 - She was with the anaesthetist for 45mins - 1hr, as she had to have lots of lines in: 2 hand cannulas, an arterial tube in the hand, 1 tube in her foot and a catheter. Then it takes a while to lie her in the correct position. The surgery took less than 2hrs and we were called to Recovery quite soon after she woke up. The only lines left in were 2 cannulas and the catheter. Her eyes were quite puffy, this was due to her lying on her front as the fluid collects there. She was in a lot of pain when we saw her. It took about half an hour for the correct dose of morphine to be found. (It is different for everyone so they have to be led by the patient.) The good thing is she now has no recollection of her time in Recovery. Once she was made comfortable she was taken to the ward and had long periods of sleep. She was on a background drip of morphine with a button for extra presses if she needed it. She was also on IV paracetamol, IV anti-sickness medicine and a normal drip. She had to be 12hrs lying on her back as this puts pressure on the wound to help it heal. After about 8hrs they had to rest her legs on a pillow as her heels were getting red and they didn't want her to get pressure sores. Moving her legs made her scream in pain. About 10hrs later they tried to move the position of her head, this also caused a great deal of pain. The night was very difficult as she had to be turned. She was very stiff and every movement hurt her back. It seemed a bit rough the way they were moving her, but it was the best thing for her to loosen her up. I later found out that all the staff nurses on Sky Ward (GOSH) have been present at one of these operations so they know exactly what trauma the patient has been through and to help them learn how best to treat them post op.
DAY 2 - She was very sleepy and needed lots of presses for extra morphine. She was very frightened about being moved or having medicines put in her cannula (the antibiotic, in particular, stings when it goes in). Her temperature was high from the first night and peaked at 39.7! Apparently a high temperature is a common result of surgery and not usually a cause for concern, however they did send blood and urine for testing as her temperature got so high. Later that evening she felt well enough to be propped up and we all watched a film together. She was a bit confused though (due to the morphine I'm told). She kept asking me to take her upstairs to her room and she wouldn't believe she was in hospital. The night was better, but because she was moving her arms and legs in her sleep (which is good) this caused pain in her back which woke her up! :nut:
DAY 3 - She was cast for her brace today which was very upsetting as she had to be rolled around, even on to her front, to make the cast. Then she was so messy she had to be washed and the bed was so messy they had to change the sheets! The poor thing was exhausted afterwards! :yawn: The night was difficult again because of waking up in pain. She kept needing her button pressing for more morphine (which only the staff nurses can do). One time they were too busy to come and Maddy was getting more and more distressed. I kept asking them to come but no one did. I am not an emotional person, but I ended up sitting in a chair sobbing :cry: ...at least that got their attention!
DAY 4 - Maddy woke with a very stiff neck which had to be very gently moved by a nurse. The doctor checked her wound which was fine. This meant that she no longer needed IV antibiotics! :niceone: Her drip was removed as she was eating and drinking enough. She had a restless night but didn't need much morphine.
DAY 5 - She woke in pain and needed a few presses of the button and a change of position. She changed from IV morphine to oral morphine so her cannulas were now not in use but she had to keep them in "just in case"!. The nurse woke her in the night to remove her catheter! Yes, they do it at night so that if they have to re-catheterise they can do it in the day! :nutter:
DAY 6 - Maddy got her brace today. The change in her was amazing. She felt so secure in it that, after the initial giddiness, she was off to the play room to do craft activities! A big trauma was trying to get her to wee for the first time :woe: . It took about 20mins to get her in to her brace and to the toilet (bed pan too uncomfortable, 2 commodes broken!). Then, because her brace was too long, it kept cutting into her legs when she sat down so it was hurting too much for her to wee! In the end we surrounded her with absorbant mats and let her wet the bed! Very dignified!
DAY 7 - Her brace needed altering but the orthotist didn't collect it until 1.30pm and didn't return it until 4.30pm, so it was a bit of a wasted day. However, the hospital school did send someone to do work with Maddy which she enjoyed. Her cannulas were removed and she was given oral laxatives as you can't leave the hospital without doing a poo! And if she didn't do one they would have to give her an enema! :help: We were moved to an empty room for the night which was bliss, we both slept right through.
DAY 8 - Not 1, not 2 but 3 poos! :niceone: The physio took Maddy to the stairs and was pleased with the way she went up and down them, so she said she was ready to go home! Then she went to x-ray, had her hair washed (it was so matted from lying in bed for so long!), the OT came, the nurse checked her wound (which was fine), the Spine Fellow checked her x-rays (which were fine) and then an ambulance crew turned up to take us home! A busy day!
So there you have it. A traumatic few days followed by fast progress. It must be said that this is the best case scenario, to be out in a week. I did hear that one girl was in recently for 3 weeks following this procedure. Also, it was good that there were 2 kids on the ward who had had their rods lengthened. They were running around the ward the following day and allowed to go home. This was good for Maddy to see, however I heard that one person was recently in for a week following the lengthening, so everyone is different.
Since we have been home, Maddy has needed the occasional dose of nurofen for neck pain and that is all. She loves her brace and hates taking it off! She is 4.6cm taller and more comfortable sitting at the table to eat, write, etc. She says she is glad she had it done.
I hope this helps. Please feel free to PM me if you want more information.
very detailed report rachie, well done! it's funny that i recognise a lot of those experiences from my own time in hospital, even though i was a lot older than maddy and just had a fusion rather than growth rods (because i was diagnosed as a teenager).
glad it went well in the end, i know it took a lot to get there.
Thank you for doing that Rachie - it will be really useful for anyone else coming up to the surgery. Interesting how it only took 2 hours. I really thought it was a much longer operation. Now that we're under Tucker too, I wonder whether his opinion will be to use rods with us. I'll let you know.
I'm glad all is well and she's continuing to make good progress. She'll be back at school before you know it.
Rachie, that was fantastic to read and will be a Godsend to others with kids facing growth rod surgery.
I, like Becky, recognised much of those first few days :P It was weird though how, all of a sudden (when you come off the morphine drip and have the cathetar removed, I think) you seem to be up and about and then there's no stopping you! I used to try to have something different that I could do ready for the evening visiting when hubby brought the kids to see me. It was great to see the shock on their faces the first time I walked back up the ward fron the loo!!
I hope little Maddy continues to amaze you with her own progress! :D
:squeeze: :squeeze: :squeeze:
Thanx Rachie, that is a great report !
I'm glad that Maddy is well, and you both think it was worth it.:kiss: :squeeze:
I need to up date Dylans thread. Re his cast. (my pc is died, its in the shop being repaired, i'm doing this over my phone) :nut:
Alot of those things sond similar to my fusion (I was 15 though). Bless her, she'll be up and about and back on the mend in no time. She's a strong little girl.
Nikki x x x
Thank you so much for adding this info, I'm 15 and getting my Op in the summer. This is really helpful!
HAPPY ALLS WELL FOR YOU BOTH COURTNEY WILL BE HAVING THE SAME OP UNDER MR TUCKER.I THINK ITS A GOOD IDEA TO KEEP A DIARY AS THIS REALLY HELPS PEOPLE LIKE ME WHO WORRY CONSTANTLY ABOUT THE FUTURE .
CHILDREN HAVE THIS UNCANNY WAY OF ADAPTING AND BOUNCING BACK.HOPE YOU ARE COPING WITH EVERYTHING ITS ALL VERY STRESSFUL I SPENT THREE DAYS ON SKY WARD LAST WEEK AND I WAS EXHAUSTED AND COURTNEY ONLY HAD A PLASTER JACKET.
:squeeze: LOVE TO YOU BOTH
X X SHARON X X
Im glad things went ok. My daughter had growth rods inserted last October, aged 3 years and is due to have her second lenghtening done this Wednesday. She is doing well. I love the detailed diary, it will really help others in the same situation. Love Beth
Just wanted to thank you for taking the time to put this on. Its amazing to read about Maddy progress in such a short space of time. Well done her and well done you for being so strong aswell.
Rachie, You should do it up as a book and get it published with photos and xrays. It is excellent! Thank You for taking the time!
Thanks for your comments. I know it would have helped me to know what was going to happen before it actually did!
We are nearly 3 months post-op. The other day Maddy said "I did a handstand to get out of bed today" - MADDY!!!!! :bump: She's feeling too well that girl!
Thats great she had made a good recovery, who would of thought handstands hey well done maddy. Our bodies are quite amazing things arent they. :D
P.S Is she allowed to things like that? Can she do P.E. at school now
No she's not allowed to do handstands!
PE isn't allowed yet, but swimming will be allowed from next week.
Hi, I was thinking about it after i posted, sorry, dont really know what is allowed and what is not allowed when doing sporty activities once you have had rods put in, or how flexible the back is when the rods are in.