Before you start reading, this is quite a detailed post for friends and family who want more details but also for families that are going to embark or thinking of embarking on a similar journey.
PRE-OPERATIVE
We arrived from London in West Palm Beach on Thursday night, and Daniel had his pre-operative appointment at
St Mary's Medical Center on Friday afternoon. We thought it was a short appointment with
Dr Paley but it was actually an afternoon of appointments.
First was all the standard checks with the nursing team. Daniel was pretty good, probably as a result of his hospital visits after the febrile convulsion episodes (another story but just some more stress for Mum and Dad!). He was NOT HAPPY about drawing blood from his finger though. The nurses were great and managed to calm him down with biscuits and ice lollies. Max enjoyed an ice-lolly too, although half his face was stained bright orange.
Next stop was the anesthetist who ran through the process and explained that Daniel would have an epidural during and for a couple of days after the surgery to manage the pain. He also said that if Daniel developed a cold over the weekend we would have to cancel the surgery. I had a cold at the time so I spent the weekend stressing that Daniel would catch it and the surgery would be cancelled, apparently a common scenario. I tried to keep a germ free distance from Daniel which was really hard because all I really wanted to do is cuddle him lots.
Next stop was x-ray. Daniel was pretty tired by then and started being very hyperactive running around and laughing hysterically. He wasn't too happy about having the x-rays though, Max and I could hear the yelling down the hallway.
Our next appointment was with Dr Paley and his PA (Physicians Assistant) where they reviewed his x-ray and MRI. The good news was that Daniel's knee is stable so he didn't not need the Superknee procedure. The bad news was that there was only a 75% chance that the hip surgery would be successful compared to the usual 99% because the femoral ball had fused to the socket and there is a chance that it could re-fuse post surgery. We also found out that the surgery could be about 9 hours and he would likely need a blood transfusion. Scary stuff.
Our final appointment was a blood test at the laboratory which we postponed until the next day as by this time it was 6:30pm and we had been up since 4am suffering jet lag so we were exhausted. The blood test was not much fun for anyone. Shane had to hold Daniel down with him screaming as two nurses took his blood. I was holding back tears, it is just so unfair that my little boy has to go through this at such a young age. He was really funny though. The nurse asked him who Daniel Rigby was and he pointed at Max. He then told her to do Max first. Poor little Max, he had no idea what was going on. Daniel talked a lot about squeezing his arm and taking blood, pretending to do it to Mummy and Mickey Mouse. Not a typical imaginative play scenario for a 2 year old!
So at the end of the day, both boys asleep in the back of the car, Shane and I drove back to the hotel feeling very emotionally drained and very overwhelmed. We knew that we were doing the best we could, we were having the best possible surgeon in the world perform the surgery. We needed to focus on that to get through the next few days. We were just hoping that Daniel stayed healthy over the weekend so the surgery could go ahead so our little boy didn't have to go through all this again. I don't know if our nerves would have coped with it either.
The night before Daniel's surgery we all went out for an early dinner at a family restaurant. Daniel was really well behaved and very cute which made tears well up in my eyes especially when Shane told him to say to me, "I'll be okay Mummy". How was I going to get through this? As for any parent, I just had to.
Cuddle with Daddy the night before surgery
We arrived at the hospital at 6am. Daniel woke up coughing which worried us a bit. He was in a great mood which made me feel worse because he had no idea what was coming. The anesthetist was not too worried about the cough and said that they would just have to monitor it during and after the surgery.
A party with friends in the pre-op area before the big event
Daniel was given a pre-med so he was happy - just like he was high. Shane took Daniel into the operating theatre where he had to blow up a balloon to help him breathe in the sleeping gas. Shane came back and we both sat on the bed fighting back the tears. Max, oblivious again, was sleeping in the stroller.
We sat in a waiting area for about 10 hours, reading magazines and trashy novels and taking turns to take Max for walks outside. I wouldn't have thought it but the knot that had been in my stomach for days had eased off a bit. It has been similar to waiting for a big exam. The nerves before are a lot worse than the actual exam. A couple of times someone on the surgical team would come out and give us updates. We also saw Dr Paley three times, once on his way to the theatre, once after he finished the internal work and once after the external fixator was put on. He was pleased with the result and didn't think the hip and femur would re-fuse which was fantastic news.
At about 5pm, we were taken through to the recovery waiting area by one of Dr Paley's PAs. We were able to catch a glimpse of Daniel as they drove him past to recovery. It was almost an hour before we were able to go in though because afterwards we learnt that Daniel had spiked a fever and was having trouble breathing. We were eventually allowed in one at a time. It was a pretty stressful time.
Once he was getting enough oxygen, they transferred him to the Intensive Care Unit. The poor thing had to have his arms restrained because he kept trying to pull out his IV and pull off the oxygen mask. I stayed with him overnight. He was given a drug throughout the night to reduce the inflammation in his throat caused by having a breathing tube in for so long during surgery. By the morning, he was breathing normally so we could transfer to the normal ward. Daniel had a sudden spurt of energy in the morning, probably a side effect from one of the many drugs he was on. I was given about 15 different drug information sheets which was slightly scary. Daniel started climbing up the bed and telling Shane that he wanted to put his shoes on and go home. He also broke his epidural, his pain relief for the next 2 days!
First night in hospital (Intensive Care Unit)
POST SURGERYDaniel stayed in hospital for the next two nights. He spent most of the time sleeping or watching television or being poked or prodded by doctors or nurses. The worst was the 5am blood test!
Day 2 - Looking better (fewer tubes at least!)
Day 3 - Even better, hospital food!
The physios came around on the third day to get him out of bed into the stroller so he could play in the playroom and I took him for a couple of walks outside.
First trip out of bed to the hospital playroom (you can see the fixator in this photo)
Max enjoying the playroom too!
First walk outside to the front of the Children's Hospital
For the first few days when we got back home (hotel substituting for home), Daniel was pretty withdrawn, not like the Daniel we know. He spent most of the day in bed and we would take him in out in the pram to get out but he would just sit there quietly looking sad.
Over the next two weeks he started to improve and we started to see the old Daniel. He still had quite a bit of pain and could only be in one position for a short period of time before it started to hurt again. He also started to crawl a bit. We were lucky enough to meet another Australian in the park one day before the surgery who has two children of similar age. Daniel really enjoyed visiting them and playing with their toys - it was the best therapy and really helped to distract him from the pain. (Thanks Hayley, Finn and Avalon!)
We visited
Quantum House on our last night. Quantum House is similar to Ronald McDonald House, a caring place to call home for families whose children are having hospital treatment where each night a different charity group cook dinner for all the residents. Daniel and Max really enjoyed playing in the playroom and we were able to meet some other children with fixators. We are hoping to stay there for some of the Daniel's first lengthening procedure.
The worst thing we have to do is the pin-site cleaning. Every day we have to clean the pin sites where the metal rods on the external fixator enter the skin to avoid pin site infections. Daniel has six pin sites. Shane (my hero) has taken on this job while I try to stop Daniel moving and calm him down. Bandages are wrapped around each pin site which have to be removed, the pin site cleaned (or scraped if there is dead material) and the bandages re-wrapped. Daniel sobs through the whole process, crying, "Daddy, stop", "Daddy, hurts". Its not fair that a 2 year old has to endure this!! We are hoping it gets better as the pin sites heal a bit more. Otherwise, it is going to be a long 3-5 months until the external fixator is removed.
We had our 2 week post operative appointment with Dr Paley and he is happy with Daniel's progress. The x-ray was pretty amazing, bits of metal everywhere. We have to send an x-ray via email to him every 4 weeks. We can have the fixator removed in the UK so we don't have to return provided all goes well until the first lengthening. The timing will depend on how the femur grows but will probably be between the age of 4 to 6 years of age.
Thank you to everyone's support during this time. Shane and I often say that one of the upsides of having a child that has to go on this journey is the love, kindness and support of family, friends and strangers that we have experienced along the way.
Enjoying the Florida sunshine post surgery with Mummy
Enjoying the Florida sunshine post surgery with Daddy
WHAT ABOUT MAX?
We can't forget Daniel's little brother Max. In the three weeks we spent in Florida, Max changed from an easy baby to an adventurous infant charming all those he meets. He has been the comic relief for all of us! Thanks Max.
Update: I wrote this about 5 days ago and as I write tonight Daniel has improved quite a bit. He is experiencing a lot less pain and is a lot happier. Pin site cleaning has improved a bit too. Shane manages to do most of it in the shower while distracting him. He hasn't started walking yet but he is crawling about a lot more and jumping around on the sofas.
Posted By: Kristen (Daniel's Mum)
is brother's ongoing needs.
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