Angus

Angus is 30 weeks old today, it is also 6 months to the day that he was admitted to hospital – so we celebrated in style by taking him home for the afternoon! It was a real palaver organising all of his stuff and packing it into the car. He took everything in his stride and didn't give us any cause for alarm. He had a nap on the sofa with his Dad. The only things I forgot were nappies.  

Then he returned to 6B, the conquering hero. We gave him his nebuliser then set him up with his food, and left. It’s been a lovely day. Lower key than I might have dreamt in the past, but good for that reason. There was no drama either way and that’s fine – boosts the confidence.

 

3/5/05 (10 months old)

Until the past week, Angus was doing very well. He is still ventilated 24/7, but he'd started getting casual enough about it that he would pull off the vent hose and hand it to you without batting an eyelid. He sits OK in his Bumbo seat (special chair which looks like a giant potty) but can't sit on his own yet. He's still not eating orally and pulls out his NG tube several times a day sometimes. He hates it, so we're looking into getting him a G-tube (tube directly through the abdomen into the stomach) so he can get fed that way until he gets the hang of eating by mouth. We hope that getting the tube out of his nose and throat will make swallowing easier and more pleasant for him. We switched his feed from my milk with supplements to a formula feed because he was vomiting several times a day and not gaining any weight. Since going onto the new feed (with a little of my milk mixed in for antibodies) he's gained weight and been sick less often. We're still waiting for a care team so he can come home full time, but recruitment is very slow, so it will just take as long as it takes. We're getting an oxygen condenser for home use soon so he can come home over the weekend. We've also found a nursery who are keen to take him with a carer, so hopefully he can start there 1-2 days a week (there is one nurse who is the start of his care team) soon. I think he'll love it, and I'll be very interested to see how his development comes on in a more normal environment.

Last week he started having breathing difficulties similar to when he went in to hospital. It was very frightening because he was working so hard and was very distressed at times. There was a worry that his heart had gone into failure again, but it's fine. He has had numerous tests, but they can't find anything which really explains why he's having problems now after being so stable for so long. He's improved a lot since Friday, but he's still not back to himself.

He's getting a kidney scan next week because some children with EvC can have renal problems and he did have two minor urinary tract infections in ICU. They're not unduly concerned though. He hasn't had any obvious signs of renal problems.::::touch wood::::!

 

15/8/05

Angus had an operation to put in a g-tube and a Nissen fundoplication was carried out on 10/5/05. He recovered well from this operation, but we found out he'd become colonised with MRSA in the week following so he had to go into isolation. Then he got rotavirus and was really ill for a week. He lost 2lbs in 2 days and became so dehydrated he had to go onto a drip. He improved quickly after that week, and started gaining weight well. His breathing improved after the g-tube and Nissen operation too. The summer has been good here so he's been taken out to the park a lot by the nurses. He's inherited his dad's skin and has managed to go a lovely golden colour despite sunblock. He looks lovely and healthy. He weighs 8kg now. He can sit independently, and has learnt how to hit the pegs on one of his toys with a hammer, and you can see him really putting together how his toys work now. His latest game is giving you things - he finds this hilarious.

We attended a big meeting at the hospital about Angus last week. We may have a full team for Angus by the end of September if everything goes according to plan. In the meantime we will have a carer for Friday and Saturday nights so we can have him home every weekend from now on. This has been going well and he really enjoys being home. This weekend he kept pulling his vent hose off. He can manage for up to 5 minutes without it. So things are moving forward for us - isn't it great?!

 

16/10/05

We were meant to get Angus home for good this week. We've had him home for two days and he's suffering badly. He's struggling to breathe, his breath and heart rate are up, his sats are down, and his oxygen requirements are up. We took him back into hospital on the 18th because he was struggling so badly. Antibiotics had no effect so he had to battle the virus on his own.

 

11/11/05

Angus came home for good today! He was wired for the first night and didn't get to sleep for ages, just turning and gurgling in his cot. He had a lie in the next day though. It's so good to have him here at last, after such a long wait!!!!

14/4/06

Angus has settled very well at home and at nursery. He loves being around lots of other people as long as not too much attention is on him. He is learning British Sign Language (BSL) alongside us so that he can communicate with us and his carers. He's doing very well with it and has a greater vocabulary in sign than most 2 year old boys have in speech.

He's had 2 hospital stays due to chest infections since he's been home, one at the beginning of February, and one which started a week ago. He's back home now on co-amoxiclav and doing very well. Before this recent bout of illness he was managing up to 45 minutes off the vent AND oxygen as he bumshuffled about the house.

He had an orthopaedic appointment last month because he wasn't weightbearing properly through his left leg. We don't know why he isn't, but both hips are in place, though they have retroverted femoral heads. This isn't dangerous, it just means that he has excessive external rotation and limited internal rotation of the hip joints, therefore he will always walk with his feet turned out a lot. It's hoped that he will take equal weight through both legs in time and with practice. He can stand with support, e.g. hands on the coffee table, and will walk if you hold his hands firmly and gently pull him along.

He can make a variety of sounds now - "ba" "wa" "ma" "ka" "ga" and "bler". He also goes "ooOOooOOOOooo" with an intonation much like speech. He seems to enjoy practising all this before he goes to sleep.

 

6/1/07

Angus went through a fabulous period in November last year where for 3 weeks he was spending more and more time off his ventilator. He managed a total of 8 hours most days during the last week. We enjoyed it while it lasted, knowing that the next infection would set him back again, but it was fantastic to watch him enjoy his new found freedom. Freedom to climb the stairs, freedom to leave the living room and cruise along the wall in the hall, freedom to walk into the kitchen just holding onto a finger for security...... During that time he also progressed up to the 2-3 year old room at nursery because he was off oxygen, and his vent has got slimline batteries now. His speech has improved since being there and he hardly signs now because he can communicate quite well. He has difficulty putting lots of words together because it requires a lot of breath control, but we keep trying to encourage him because when he tries he can manage about 4.

He's been on a weight gain diet for the past 2 months because he didn't gain any weight last year between March and November. Whilst this doesn't bother me much since he's doing well in so many other ways, it may slow his growth and what we really want is rib growth so he can get off the vent! Since being on his "fat" diet, he's put on a nice amount of chub, and I'm sure he's grown a bit taller, though I haven't checked.

He got respiratory syncitial virus (RSV) at the start of December which kind of put paid to his time off the vent. After 3 days in Yorkhill he came home again. He had another short stay between Christmas and New Year due to a chest infection. This meant that he still enjoyed Christmas and New Year at home, and he really did! You can see him on one of his toys here:

Angus on red car

He managed all his unwrapping himself and really entered into the spirit of things. It was heartwarming to watch him alongside his sister getting stuck in.

Angus is walking short distances now without holding on. Apart from eating by mouth (which he's not doing at all), he's moving on at a rapid pace in all areas. I wish I had the writing skills to paint a true picture of what a lively, affectionate, funny and normal little boy he is, but I really don't think I could do him justice. Just take it from me that he's an utter delight, and we're so glad that all the trauma he went through has been worth it. He has a great quality of life now, and most people can't believe that he has such health problems - he looks so healthy and boisterous. He's sitting on the living room floor now in his bright green training pants (yup, potty training too) watching "Big Cook, Little Cook" intently. Oh, now he's decided that holding onto the coffee table whilst sliding one foot around resting on a toy hat is a good idea. I'm sure that later on he'll start pulling everything out of his toybox, or will post books into the narrow space between the bookcases in the living room so that I can't get them. It's all go in the life of a busy 2 year old!

 

4/4/08 - Now He is 3 3/4

First the depressing stuff - Angus is still ventilated most of the time. He needs it all night, and nearly all of the day. There has been no steady progress off the ventilator at all. He has been through a few periods of spending a lot of the day off the ventilator, only using a HME (heat and moisture exchanger) over his trach, but as soon as he gets another chest infection he needs the ventilator all the time, and often oxygen as well. He is still not potty-trained because he's not able to hold it in yet. He knows when he's peeing or pooing, but it's too late by then. I'm just putting this down to him being an individual and not stressing about it yet. The breathing problems are a much greater issue.

We really want to help Angus get off the ventilator. I have done a reasonable amount of research on surgical alternatives and have decided on an operation called the lateral thoracic expansion procedure. We are pursuing the following course of action - After much chasing around of health professionals, culminating in my sending a letter to the (Greater Glasgow Health) Board of Directors, Angus' consultant is referring him to Columbus Children's Hospital in Ohio with a view to him having the lateral thoracic expansion operation there. We found one surgeon in Great Ormond Street who seemed willing to have a go, but his care team up here decided that it would be better for Angus to go to the experts. He has had a series of tests here, and the referral should have been sent, but there is a delay (yet again, we've only been at this since Feb 2007) due to a combination of lost cardiac surgery notes and a discussion over whether they should get a cardiac catheter test done before the referral gets sent. It's very frustrating. It is our dearest wish that Angus should get at least one side expanded this year. He is a bright, active, chatty and fun little boy. He could get so much more out of life if he weren't tethered to a piece of machinery most of the time. He hasn't been able to learn how to run because of the vent.

On the up side, he is now attending two nurseries. He goes to a private nursery in the morning, and then to a council-run nursery attached to the primary school he'll be attending August 2009 (you can see why the surgery issue is so pressing!) in the afternoon. He loves both nurseries, and is loved by staff and children alike in both of them. Initially kids tended to treat him like a baby by picking him up and cuddling him when he didn't want them to, but he's very assertive and will think nothing of holding up a hand whilst saying "No, don't!" very firmly. He's not nasty about it and doesn't resort to hitting, but he certainly gets his message across. His social skills are very good. He chats away to staff and kids. He avoids the more boisterous play, preferring the computers, kitchen corner, shop area and book corner. I hope he'll start to enjoy the boisterous play more once he's off the vent.

Near the end of last year, Angus started eating butter. He will eat an ounce of butter if we let him. This year he started eating grated cheese. At one stage he was doing very well and eating 3 small platefuls a day, but he's back-tracked a fair bit and will eat more like 3 tsps. This ebb and flow of progress is common in children with behavioural eating disorders. We've learned from experience that the most successful way of dealing with this is to ease back on any kind of pressure and present him with more choice and more control over what happens at mealtimes. We were so used to him eating cheese that we'd started automatically presenting it, now I give him a bare plate and let him decide what he wants on it, like I used to. It's a bit frustrating, but I don't think there's any other tack we can take. He attends a Feeding Clinic at Yorkhill and they are happy with how we're managing. We're going to have his growth hormone levels tested because some kids with EvC have lower than normal levels. If he does, then we'll start growth hormone treatment and this may increase his appetite. I think that his eating problems will outlast his breathing difficulties, so I try not to get too wound up about things. He's come a long way from the little boy who wouldn't even touch food with his hands when he came home.

 

2008-2009

Well, a lot has happened the past year or so. Greater Glasgow Health board (GGHB) thought sending Angus to Ohio was too vast an undertaking, so they referred him for a second opinion at Great Ormond Street (GOSH). At the time I was REALLY hacked off at yet another delay, but it was a very positive meeting with a surgeon called Professor Martin Elliott who is the head of cardiothoracic surgery there. He was keen to learn the lateral thoracic expansion operation and believed that it was the best option for Angus. He wrote to tell GGHB so. In the end everyone reached an agreement that the surgical team from Ohio would come to GOSH to carry out the first op alongside Prof. Elliott. Funding was finally approved in December 2008, days before Christmas. It was the best present I could have wished for! I have no shame in saying I cried happy tears when I read the email telling me the funding was approved. Sadly we are still waiting for a date for the surgery. The main sticking point at the moment is freeing up a bed for long enough in GOSH PICU. The intensive care docs are understandably reluctant to say a bed will be available for more than a week. GOSH is a tertiary care hospital so they get very specialised and often seriously acute cases. While I understand this, it is frustrating that time is ticking away for Angus to grow new lung tissue.

Another downer this year was the news that Angus' pulmonary hypertension had worsened to a worrying degree in January. Although we don't know the reason for certain, it seems that the most likely reason, given that his heart and lungs seem fairly stable, is that his rib growth is not keeping up with his growth in general. He has taken a stretch this past year (he measures a whole 85cm now!), but his wee chest just seems wee-er in comparison. He has gone from being off oxygen during the day and spending a bit of time off his vent, to needing to be on both all the time. He's also started on sildenafil (Viagra) again, five times a day. All these measures are a pain, but they are working well and he's happy and stable again. He had an appointment with Dr. Schultz-Neick of the Paediatric Pulmonary Hypertension service. He said that the rise in pulmonary hypertension presented a small increased risk for surgery, but a manageable one. He strongly believes that the operation will reduce the pulmonary hypertension significantly. Phew!

Eating. Well, this has much improved since I last wrote. Angus gets no formula feeds down his tube these days at all. If he's really not eaten much in a day I'll give him a blended meal in the evening down his tube, but I haven't done that for a week now. He eats/drinks:

• cheese

• butter

• Marmite

• rice

• gravy

• pasta

• chocolate

• syrup

• cheese sauce

• tomato soup

• milk

• chocolate milk

• water

He still eats very erratically - munchfest all day one day, and then hardly anything the next, but he's still growing and gaining weight so I try not to stress about it too much. I would like to see him eating veg and fruit, but he's not keen to try. I think I would have more success if he liked purees, but he turns his nose up at them. My next step is to pay up for lunch at nursery. I wonder if he will try a greater range of things if he's got the same as his compadres. He will also take his meds orally if they are in a sweet syrup. We're using tablets at the moment, but I reckon I can make a stock syrup and use that to mix with a crushed tablet and give it to him that way. He'll need to be all by mouth for at least 3 months before we can lose the mickey button. I'm not keen to lose it until he's had both chest operations really.

He's doing well at nursery. He got a full time place this year which has made things a great deal easier. Because of his disabilities we were offered a taxi service at the start of the year. I did say I could take him, but the Education dept said it was standard so why not take it? This has enabled me to cycle to work and get a bit fitter. I feel a lot better for it, and Angus loves going by taxi. He knows all the drivers and they seem pretty charmed by him. The pre-school teacher has no concerns about his ability to cope with school after summer. The OT and physio have assessed his physical needs at school and will order a power chair, steps with handles and a Tomcat chair. I really wasn't sure about the power chair, but I reasoned that it will enable him to move around the school with his vent and oxygen without having to ask and wait for someone to carry all his gear around behind him. Once he's off the vent, the power chair is going back, that's for sure! Angus is looking forward to starting school. He'll be going with a lot of his friends from nursery. They should help field all the questions from the other kid's who've never encountered someone like Angus before.