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!
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! 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 ...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! 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!
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 . 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! 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! 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.