1 month since discharge

His new haircut - such a grown up Toby!

Food again!...

After changing to the baby formula milk Toby started waking up earlier than usual so after two nights of getting up at 2.30am we decided to try replacing his 10.30pm baby formula feed with the complete liquid feed to see if it was hunger that was disturbing him. He has slept a little later (waking now between 4 and 5am) since making this change so we will stick with it as long as he doesn't put on too much weight - the complete feed is higher in calories than the formula milk. This week Toby has also increased the amount of solid food he is eating at each meal so I think stopping the complete feed during the day was the right thing to do as he is hungrier and consequently eating more but maybe not quite enough to get him through the night.

This is Toby in the Bee Chair - we only use this for meals at the moment so he knows what to expect whenever we put him in the chair. It holds him in a good position to eat although its not the easiest thing to get him in and out of as it has many straps and adjustable parts that have to be done up and undone each time. The chair height is adjustable so it can be lowered to the floor or raised up to the height of the breakfast bar.

Toby is having weekly physio sessions with the physiotherapist from the Child Development Centre and we have lots of exercises to try and do with him between sessions. Toby shouts alot during physio but he will generally tolerate the positions for a while. Mat has been helping out - here Mat is encouraging Toby to stay in side lying and to let his head drop down to the mat.

Mat finally had his hair cut today (I think!) - just in time for school tomorrow!

I am not really doing an official physio exercise here but just playing with Toby in the morning.

Toby still enjoys his baths although he doesn't close his eyes and lie back in the same way as he did whilst he was in hospital - I think that then the bath was helpful in reducing the pain from the increased pressure in his head - our GP wondered if the drop in blood pressure that happens in a warm bath led to a similar reduction in the level of pressure in Toby's head and thus gave him a little relief from the pain. Its very hard to remember the pain that Toby seemed to be in for so long when he was in hospital - Martin and I tried constantly to work out what was causing the pain and to make Toby more comfortable but we didn't know that hydrocephalus was a potential consequence of meningitis until it was finally identified through a CT scan. Hopefully the shunt will continue to work effectively as Toby is so much more settled and hopefully more ready and able to engage in the tasks necessary to acquire new skills.

We visited the Rehab Centre yesterday. Despite this visit, it is still quite difficult to decide whether and when Toby will benefit from going as we really only saw buildings and empty rooms. We didn't have the opportunity to speak to any therapists but I think that even if we had, it would have been difficult for them to discuss how they might work with Tobes without having met and assessed him. We did speak with a doctor who immediately said that Martin or I would be able to stay in the same room as Toby if he does go to the centre. The admin officer showing us around was less sure about this but the doctor was quite firm in her belief that this is completely appropriate for parents to do when little ones are admitted. This was a big concern of mine as they had originally said we couldn't stay in the same building as Toby and we weren't prepared for him to stay without one of us so at least this problem has been resolved. I think we may only be able to find out if its the right thing for Toby by trying it out. We would stay at the centre from Sunday to Friday and return home each weekend. The doctor we spoke to suggested we have 3 months at home to recover from hospital and then go to the centre around Christmas. We are hoping to talk to a family whose son has undertaken a programme at the same centre to find out what their experiences were like and hopefully this will help us make a decision.

Play?

Toby has been hitting out at the toys that I have hung from a string above him and also hits and knocks over a blow up toy - we are not sure if this action is deliberate and he will hit out when the toy is not in place but watching him it seems that he hits out less often when the toy is not there so maybe he is trying to knock it down.

So after our first month at home we are managing and Toby seems to be settling and making some progress. We are so pleased that he is eating solid food - the next step will be to start tackling liquids but we will wait for advice from the SLT around this as I think we will need to start with thickened liquids and I am not sure how best to offer these to Toby. Sleep is ok although I am up and down quite a lot to reposition him and check on him when he wakes early in the morning. Tobes is also showing some signs that he might be able to start playing which is good. We are beginning to reduce some of the medication that he has been on - much of it was increased in the attempt to overcome the problems that were actually being caused by the hydrocephalus so hopefully some of this can be significantly reduced. When we were in hospital we were always shocked by the amount of waste incurred by the disposal of so many syringes and other bits of equipment. After a month at home my hands are falling apart from all the washing up and I am tired of standing at the sink numerous times each day - oh for disposable syringes!!

Two-way communication is the thing we are really hoping for and it just seems so hard to find a way to start without vision or hearing. Toby is going to be assessed for cochlea implants so this may be one way of communicating if he is suitable - he is having the MRI scan next week as part of the suitability assessment so we will wait and see if he passes this first hurdle.

Lisa

Hair cut, food and sleep

Toby had his hair cut today! With short hair his cheeks look really chubby but he looks so grown up - not my little baby anymore. A hairdresser friend of my sister Jess, offered to come round and cut Toby's hair after seeing the pictures of my two long haired lads on the blog last week. Toby shouted a bit through the experience but we got there in the end. Mat has refused to have his hair cut yet - there is still a week to go before school starts and he's holding out as long as possible.

Toby's eating is continuing to improve. We shocked the team at the Child Development Centre last week when we told them that he was eating 3 meals a day. The Speech and Language Therapist had not been able to make a time to assess Toby's swallow until September. They had not expected us to move beyond swiping small amounts of pureed food on Toby's lips until this assessment. We explained that Toby was setting the pace and that when he began to communicate his desire for more food we could not ignore this first piece of communication. I had spent time with the S&LT in Hospital and felt relatively confident in moving forward so we have progressed and Toby is doing very well. His gag reflex is active and he coughs and clears any little bits of food that catch him out but this doesn't happen very often. He is eating so well that we have, today, stopped the special liquid feed that he has been on for the past couple of months and replaced it with a smaller amount of ordinary baby formula milk - formula rather than cow's milk to make sure he gets all the vitamins and minerals he needs. I did speak with the dietitian before making this change and we have reduced the amount to that which he would normally have needed as an 18 month old toddler. Toby managed to put on over 0.5 kilo (about 1 lb) in the last week so we need to slow down his weight gain and the baby formula has a less calories than the complete enteral feed. So now Tobes is eating porridge or weetabix with fruit for breakfast and I am making little meals for his lunch and tea - he is managing quite lumpy textures now as long as they are fairly soft.

It has been really good to be able to feed Toby real food again and he is beginning to tell us that he is hungry - he starts shouting about half-an-hour before meal times and then goes very quiet and starts opening his mouth as we put him in his chair. He is definitely learning this routine! We are quite restricted by his mealtimes now though and have only a couple of hours when we can go out as we need to be able to put him in his special chair for each meal. For the moment we can manage this routine as the furthest we go is a walk round the park or to a friend's house only 5 minutes away.

Sleep is still variable but still much better that it was in hospital. Toby is still waking around 4am each morning but he is fairly content to lie in his bed until 6 and I pop in and out to reposition him and check he's ok. We have put this black and white mobile above Toby's bed as one of the neurologists said that we should continue to stimulate his eye sight as it is possible that his brain may be able to make new connections and, in her experience, some children with similar brain injuries as Toby have regained some sight in the 12 months after the illness. She said she cannot predict whether this will happen for Toby but it is a small possibility. So we will wait and see.

15 second video of Toby in bed - he's not asleep!

We still can't tell whether Toby recognises us at all. He will calm if we cuddle him if he's a bit distressed but we haven't been able to establish any kind of two way communication yet. We are beginning to recognise Toby's different shouts but whether he is able to take in anything about his home or us is difficult to tell. He has done really well since he was discharged only 3.5 weeks ago but it is still upsetting that he hasn't shown any sign of knowing us since the night before he fitted 22 weeks ago. We keep on hoping that he has some sense that we are with him.

Lisa

Toby and Mat

Couldn't resist putting on these photos of the two boys - both in need of hair cuts!

Thank you to everyone who has left a comment - its really nice to find that people are reading our blog and I really value everyone's support. I get quite excited when I see someone has left a comment - much to Martin's amusement!

Lisa xx

More food!

The photo above where Toby is lying on Martin is actually part of Toby's physio exercises - he's working on his neck and head control as well as stretching out some other muscles.

Here's a photo of Toby asleep in the garden - the weather hasn't been great this week so we have taken advantage of every bit of sun. We really do need to get Toby's hair cut - its rather wild at the moment and the two shaved patches don't help. Maybe we will take Toby and Mat to the hairdressers next week - Mat's hair is far too long for school in two weeks time.


This week has really been focused upon food! Toby has been really enjoying the meals we have given him and will just keep on opening his mouth for more. This makes it quite tricky to decide when to stop - I don't want to leave him hungry but equally I don't want to make him feel bloated and uncomfortable. Trying to judge how much he can or should eat is tricky as we have missed 5 months of development - Toby has grown quite alot over the past 5 months despite the infections he developed whilst in hospital but it feels like we have jumped from having a 12 month old baby to a toddler of 17 months - in terms of his size anyway. I still think of Tobes as my baby - in many ways he has gone back to early baby days but he is more of a toddler in size. A similar thing has happened a bit with Mat - I still see Mat as a young boy in my mind but between March and August Mat has become a relatively independent adolescent but I missed out on the process of this development and frequently get caught out as I have to readjust to this new, grown up Mat.



Toby's sleep pattern is rather variable still - on some nights he will wake in the early hours of the morning and lay in bed talking to himself and sucking his fingers, other nights he will sleep through until about 5am. We are trying to limit his daytime sleep to short naps but it always feels wrong to wake him when he sleeps so soundly during the day.

We are struggling to find activities for Toby - he enjoys being outside and seems to like going for walks - I guess the wind and the feeling of movement in the pushchair is quite stimulating for him. We have gathered together his more tactile toys that might be interesting for him to feel and added these to the sensory bag that one of my team members, Caroline, put together for him whilst we were in hospital. He doesn't show obvious signs of enjoyment but does go still at times, suggesting that he is taking in this new information. We need to buy or build an arch that we can hang toys from - we have used a piece of string tied between chairs at the moment and he does seem to be hitting out at the toys hanging down. We have had visits from members of the sensory impairment team and Portage Service who have said they can lend us some toys that will hopefully be more suitable. Martin is planning to build a resonance board - I think this is a piece of wood suspended on legs that Toby can lie on and feel vibrations of sound. It will be interesting to see whether Toby responds to music in this way as he always used to enjoy music and we used to sing all the time - well I sang and he clapped. We also need to get Mat playing his electric guitar with the amp on the resonance board to see whether Tobes enjoys heavy rock rather than nursery rhymes!

This short video clip shows Toby eating dinner - a bit messy but he's doing really well considering we only began giving him food again 2 weeks ago.




We are off to the Child Development Centre today to receive their report and discuss goals and the support they can give in terms of physio, OT and SLT sessions.



Lisa

20 Aug

Our first two weeks at home

It is such a relief to be home. It is hard to bring Toby home to his bedroom and to his toys and to all the things that remind us of his first year before the meningitis but to be together again as a family under one roof and to be able to do very ordinary things like cleaning and using our own bathroom is wonderful. We're unpacked and beginning to find places for the extra equipment and supplies that we now need to support Toby at home. We had already faced the trauma of removing his cot from his bedroom some weeks ago when we made the decision to have an electric bed installed, similar to the one he used in hospital, as this made it possible for me to lie next to him on the bed and for the bed to be tilted when he was asleep during a feed time.


Toby has slept fairly well since we arrived home, generally falling asleep around 7.30pm and sleeping through until around 2-3am. Not sure why he's waking regularly so early each morning - wondering if he's had enough sleep at that point given that he's not physically active during the day. He also has no time cues as he can't see or hear. Over the last few nights Toby has been fairly content to stay in bed awake at this time - he shouts a bit and sucks his fingers but is not distressed so after initially checking that he's ok and repositioning him, I go back to bed and pop back and forth if his shouting gets a bit loud and more demanding. I do wonder if he's hungry but he does have a feed at 10pm so he should be ok. He goes back off to sleep again around 7.30am after his morning feed and stays asleep for a couple of hours before getting up for the day. Unfortunately we don't go back to sleep along with him so our day is rather long at the moment.

This photo shows how much more flexible Toby is since the shunt was inserted on 22nd July. Toby is so much calmer and able to move his arms, legs and head so much more since this surgery, we just hope that he will not suffer the complications that can accompany shunts such as infections and blockages - he has got to have some good luck at some point because nothing else has gone his way yet.

The biggest achievement since we came home is Toby's eating!!! He's doing really well taking solid food orally again. We had periodically tried him with very small amounts of pureed fruit or savoury food just swiped across his lips - his success was variable and we had had some scarey moments when he had choked and then vomited everywhere on a few occasions. Toby becomes very distressed when he vomits as he seems to find it very difficult to clear the fluid from his throat and so we have been given a portable suction machine to keep at home just in case we have a problem. Over the last week however, Toby has gone from strength to strength with his swallow and eating. We started with applying strongly flavoured lip balm numerous times each day - he began sucking his bottom lip and opening his mouth like a baby bird when he smelt the fruity flavour.



Since then we have progressed to porridge in the morning and then some dinner in the afternoon - only half a small jar of baby puree and some fruit puree at this point but this is so encouraging I am reading Annabel Karmel again to start getting ready to make him some good home cooked meals.

He must wonder what has happened to his food and milk over the last 5 months - it must be strange to be fed directly into your stomach.



We have had numerous appointments this week and last with nurses, health visitors, physio, occupational and speech and lang therapist, sensory impairment team members, dietitian and portage. Also waiting to receive report from the residential rehab centre who assessed Tobes on 31st July and were very positive in their belief that they had much to offer him. We plan to visit the centre on 2nd Sept to try to decide whether splitting the family up again and moving Toby to another unfamiliar environment will be beneficial at this stage - it may be more useful at a later date when the progress we are making at home has reached a plateau.



Lisa
13 Aug 08

Pictures from hospital - March - August 2008

Meningitis strikes - March 2008

Toby's 1st Birthday - 2nd March 2008

I will briefly summarise what has happened to Toby over the the last 5 months. Up until the Easter weekend Toby was doing all the normal things that growing babies do. Toby celebrated his 1st birthday on 2nd March with his friends Nathan and Harrison. Grandma gave Toby a walker for his birthday and he was quickly up and about, racing straight-legged across the room until he reached the wall where Tobes would stop and wait for someone to turn him around. He would laugh whilst you lifted him and the walker around and he would set off again for the other side of the room.

Over the Easter weekend Toby developed a cold and by the Monday he was clearly very poorly. He and I were eventually ambulanced into hospital but delays and oversight in diagnosing the illness properly meant that he was not given the right treatment and early on Wednesday morning Toby starting fitting and suffered respiratory arrest. Toby was transferred to paediatric intensive care (PICU) where the diagnosis of pneumococcal meningoencephalitis was made. Toby spent the next 11 days sedated and on a ventilator. We sat by his side and could do nothing but wait and hope that he knew we were there. When the sedation was lifted and the ventilator removed, Toby showed no sign of knowing us or recognising anything around him. He was moved from the intensive care ward to the children's medical unit two days after he was extubated, some two weeks after he was first hospitalised.

Whilst Toby was a patient of the PICU I had stayed in a small room with an ensuite shower room provided for parents of children in the intensive care unit. On the children's medical unit parents slept on fold-up beds next to the cot or bed of their child and used the toilets and showers used by all the children on the ward. We were very fortunate to be given a small single room for Toby which gave us a little privacy and we lived in this turquoise room for the next 16 weeks and 5 days.

Following our transfer to the Children's Ward on 7th April Toby was extremely distressed and cried for hours each day. He would sleep for only 2 to 3 hours at a time and he appeared to be in constant pain. We tried our hardest to comfort him to no avail. Physiotherapists scheduled twice daily sessions with Toby to start his rehabilitation but Toby's physical tone was so high and he was so rigid and extended that they struggled to do even the most basic stretches with him. Occupational Therapists and Speech and Language Therapists had no role to play with him as he was not able to interact with anyone. At this stage we had no idea whether he was aware of anyone around him - he showed no real signs of recognising me, Martin or Mat and we were not sure if he could even see or hear us. The question of his capacity to hear was answered by a series of tests at the end of May which revealed he had profound hearing loss in both ears. We held out hope for his visual abilities but these were dashed by tests in July that have shown him to have no sight at all in either eye.

During his time on the children's ward Toby developed a number of illnesses - a hospital acquired infection in the form of diarrhoea and vomiting and two urinary tract infections. The second of these infections occurred in early June and was particularly severe. Toby deteriorated within just a few hours after showing the first signs of illness and the medical team were extremely concerned about him. In the search to pinpoint the source of the infection, a CT scan of his head was carried out. This scan revealed hydrocephalus - excess fluid around Toby's brain. Questions were raised but never adequately answered as to whether Toby had raised intra-cranial pressure and/or atrophy of the brain matter due to the damage caused by the meningitis. The neurosurgeons became involved and a temporary reservoir was inserted in order that the cerebrospinal fluid could be drawn off manually by the medics to reduce the pressure within Toby's head.

We held out hope that this procedure might reduce Toby's distress and iritability but the initial period in which fluid was drawn off twice a week did not seem to result in any significant difference. Before inserting a more permanent shunt to drain the excess fluid into Toby's abdomen, we needed to be more certain that this procedure would be of benefit as it carries with it risk of infection and blockage which could cause further problems for Toby. The frequency of drawing off fluid was increased to daily and we rated Toby's irritability and behaviour during a period of fluid draining compared to a short period of no drain. This systematic rating of specified behaviours and actions resulted in it becoming clear that Toby was more relaxed, slept better and was able to engage in physio more productively during the period when the reservoir was drained each day. Thus sugery to insert the shunt took place on 22nd July and it resulted in huge changes in Toby's tone and his overall manner. Overnight Toby was able to straighten his body out and turn his head from side to side. Within days his sleeping pattern had changed and he slept for up to 6 hours each night - a huge improvement on the previous 3.5 months although he was still waking in the early hours of the morning for 3 hours before dropping back off to sleep around 5am. When awake Toby was not distressed as he had been for the previous 3 months.

Toby was finally discharged home on 1st August. We are a family under one roof again and we are now learning how to live this new life with a different Toby. He cannot see or hear, eat or move his body. Toby has yet to give us some sign that he knows we are his mummy and daddy and big brother Mat, but he is still our Toby and we love him. We decided to keep this diary in order to record his progress - Martin, Mat and I, together with close relatives and dear friends, have been through some very dark days over the last 18.5 weeks and I felt the need to document positive change in order that we can see the good things that happen and give ourselves some protection from the certain despair and difficulties that lie ahead.

Lisa Butler

11 August 2008