Five Year Anniversary

Today is the five year anniversary of one of the toughest days of my life : on 4 March 2014, Joshua underwent brain surgery – a hemispherectomy – at Great Ormond Street and at this time 5 years ago, our small family was sitting in the ward waiting to be taken down to the operating theatre. We had stayed the night before at GOSH ‘patient hotel’ across the street and we had taken him out to Pizza Express for his favourite lasagne as his last meal before nil by mouth.

Joshua was the first of the cases to be taken downstairs and we signed consent for his surgery and anesthesia. I always find the speed at which intravenous anesthetic takes to take effect. It is almost instant – you are holding the hand of a lively but scared child and then in a blink, you lose him, he goes floppy and inert.  He was taken into the operating theatre and we were told to go away and amuse ourselves for the morning, but were advised not to sit in the waiting room for the whole time. So my husband and I went to a cafe for a coffee, neither of us felt like eating. Then we decided to hire bicycles and to cycle to Covent Garden as a distraction. The busy city centre traffic was certainly a distraction! Once we got there, we bought Joshua a monkey cushion as a present and we had a pancake as it was Shrove Tuesday that year.

Then we could stay away no longer, continually checking our phones for news, so we cycled back to the hospital and chose to wait on site. Then the news came that he was out of surgery, all had gone well and he was in recovery and we could go and see him. He was understandably still very drowsy and  was bandaged up, connected to tubes drains and monitors, but our son had survived the surgery. He was alive and next we wanted to hear his voice or see a sign that he was still the same boy, despite having had massive trauma to his already-injured brain, but we had to be more patient for that sign, but of course it came. The relief and the love that we felt for Joshua that day was immense. We had made a choice for him, to try to improve his life in the longer term, and that was a huge responsibility. But at this stage, we were so happy that Joshua was going to see his 13th birthday, the day after, and that the long agonising wait was finally over.

Chalk & Cheese

You may recall that ten days ago I wrote about a disappointing orthopaedic appointment for Joshua’s foot, well yesterday we had a similar discussion in a different hospital, with a different surgeon, about another limb, and the whole experience was so much better :

We had to wait over an hour in the busy waiting room to see this Doctor, which was challenging as Joshua was feeling very restless , so I took him for several walks down the corridor. Well I say walks, he ran down the corridor, trying to escape, and I followed him! I got him to sit still. briefly, with food, he enjoyed both a banana and a chocolate muffin. I should have brought my ipad to watch Shrek on, as my mobile phone was not interesting enough. Eventually we were called into the consulting room and there were two patient seats and the Doctors chair behind his desk. Immediately he offered up his seat so that we could all three of us be seated and he squatted on the floor in front of Joshua! He shook Joshua’s hand first, introducing himself and then ours and he had a gentle manner with him always maintaining eye contact.

He asked Joshua if he could look at his wrist and hand, to see what movement he had and when he pulled away as he moved up to his elbow, the Doctor backed off and said that he had seen enough and he apologised to Joshua for making him uncomfortable. He seemed so much more in tune with Joshua than the Orthopaedic Foot Doctor. Even though he was recommending surgery , he had won our confidence over with his approach and so my husband and I agreed there and then, once he had answered our further questions.

The Doctor wanted an X-ray of Joshua’s wrist to see the extent to which the joints are fused and fixed and given that it is so contorted and stiff, he acknowledged that was not going to be easy. But instead of making us or the radiologists feel bad, he explained that any image that they achieved, would be better than nothing. So despite having been in the hospital for two hours already, we went along to X-Ray and between us, they managed to get two images for the doctor to study. So now we are waiting for an appointment for tendon release surgery.

This has become necessary because , due to his stroke, Joshua has never had fine motor skills in his hand, but after his brian surgery in 2014, his wrist and fingers have got much tighter, so that his hand is always in a fist and his wrist is at right angles to his arm, due to the inbalance of tendons. He has had three batches of botox in his arm, which temporarily loosens those tendons and with physiotherapy and splints, his wrist and fingers open up more. But the effect of botox lasts a maximum of 6 months and then you are back to square one, as in Joshua, everything on his right side is just too tight. So we have opted for tendon release surgery which should give him a more permanent solution. He is never going to gain any fine motor skills in that right hand, but he ought to be in less pain with it and it will make life easier for dressing and for keeping his hand clean and finger nails, trimmed.

We were offered this surgery previously, but we were not ready and so we settled for the less invasive botox solution, but now we have all three of us reached a point where we are ready to embrace this surgical solution and I for one, have complete faith that this surgeon will do his best for our son, so bring it on.

Where there is life, there is hope

Every hospital appointment that we have with Joshua, we usually have some hope that the Doctor can improve Joshua’s quality of life in some way and yesterday was no exception : Joshua suffered a stroke at birth and as a result his right side is weaker than his dominant left, he has always walked with a limp, his right leg is much shorter than his stronger left. In 2014, he underwent brain surgery to try to improve control of his epilepsy, and while it has reduced his seizures, this surgery also has caused his right wrist and foot to tense up and contort. We have an appointment about his hand/wrist in a couple of weeks, but yesterday we took him to see a local orthopaedic surgeon to see if they could intervene and improve his foot position and consequently help with his walking and comfort.

We hardly had any wait at all at our local hospital, we were called in to see the Doctor before we had even sat down in the busy children’s waiting room. We had not met this registrar before and he fired questions at me, while I was trying to control Joshua, who wanted to use his telephone or keyboard and did not wish to sit down. Rather than read Joshua’s notes he asked me when he last had botox in his legs and what age he was when he walked, he had no rapport with Joshua at all – as opposed to his hand doctor who I love , he always asks Joshua if it is OK if he speaks to us, his parents for a while. This Doctor asked if I could “make him lie down” and he made me feel pretty uncomfortable while Joshua was lively in his consulting room. I was able to make him lie down, with some encouragement, so that the Doctor could see the different leg lengths for himself.

Joshua stayed on the couch, all the fight gone from him, and began to doze while the doctor delivered his verdict to us, we have seen him use this coping mechanism before when he is not impressed by being the sole topic of conversation : There was nothing surgical that he could do to help Joshua’s malformed foot. Tendon lengthening surgery was unlikely to be sufficient and he did not think that Joshua would be able to comply with 6 weeks of non-weight bearing after reconstructive surgery, which could mean that he could be less mobile after surgery than he is now. We were not keen on the idea of surgery anyway, but if he could have given us convincing arguments and made promises about Joshua’s improved walking ability or comfort then we would have faced it, but given the doubts that he expressed, it was clearly a non-starter and he seemed delighted to discharge us. He even complimented Joshua on how well he had behaved during the consultation as we were leaving!

I was disappointed as we left, as I had had my hopes dashed yet again. I had gone into that appointment thinking that we had options and had left knowing that we had none, so it reinforced how cruel life has been to Joshua during his 17 years. Looking for a silver lining, at least we do not have a difficult choice to make now, there was no choice, he is only looking at a continued life wearing splints and built-up clumpy NHS boots to try to compensate and support what has happened to his right foot. That is better than nothing, I am always grateful for his splints – or AFOs as the professionals call them  – as without them he may never have walked as a toddler. But it does feel like another slap in the face for our brave son.