Josh

Christmas 2011

2012-01-01T15:45:00.000Z

We had a lovely Christmas, lots of presents and fun times with the kids. Over this time Josh continued to have diarrhea (43 times to be exact, making nearly 400 for the year) and several more episodes of a high fever but fleeting and no other symptoms. we got his blood results back and are waiting a dr's input before i attempt to tell you, but he was anaemic so perhaps explaining his tiredness, and pale episodes.

On New Year's Eve we got a letter from environmental health stating Josh had been suffering from salmonella. of course until Tuesday we cannot contact anyone to discuss this (bank holiday) leaving us speculating; random coincidental finding, contaminated sample, long term problem.... and feeling guilty, annoyed, worried.....

long time no see

2011-12-15T15:42:00.007Z

i can't believe i haven't written here in 2 months, i knew we'd been busy, but still...

since last on here Josh had a very enjoyable 4th birthday, and is enjoying being 4 very much! and Aaron is now 1 and we had a family tea to celebrate.

Josh had a hearing test due to some listening troubles but mainly as Ethan had had so much difficulty with his ears, but all was fine, he just doesn't listen!

His paediatrician at Epsom saw him regarding his weeing troubles and after the scan showed the problems with his emptying the bladder, she has prescribed him some medication that relaxes the muscle or something like that. This has worked well and he is much more comfortable and has far fewer accidents. He saw the urologist up at GOS too just to rule out anything more complicated resulting from the surgery (surgeons referred him) and all was fine, they would like to do a whole day study of his bladder emptying but we haven't heard yet. A very early start this time for an appointment at 9 and ultrasound at 9.30, we missed our train which meant a mad dash and a taxi ride treat to make us only slightly late.

He had a review with the GP to see where we are at and which medications etc are still needed on his repeat, they must have had too many letters from various drs to keep track of!

We received an evening of babysitting from Crossroads (they provide respite for carers) which was lovely and relaxing in amoungst so many appointments.

We had another Gastro appointment up at GOS. we saw a nice registrar good and bad points to seeing someone new though; a fresh pair of eyes and new ideas are a good thing and he said that there are 'x' number of tests and when they are done if they don't show anything onbvious then they have to start thinking of theories (i've been wanting them to do this for well over a year!). However he did want to repeat some tests which is the disadvantage of someone new along ith having to start the story over again. He also noted a slight incisional hernia from his op.

It was an exhausting day though; up to London with both Aaron and Josh and juggling the pair of them whist listening to the dr, and then we were very popular on the commuter train home Josh eating macdonalds and Aaron a jar of babyfood and screaming with wind, culminating in Josh needing diarrhea whilst still onboard but luckily just after the last big station so that me popping one of Aarons rather small nappies in his clothes was only slightly embarrassing!

So following on from this we had to go up ealy again for a barium swallow, but being the day after a stormy night the signals were down at Clapham making us an hour delayed even having left in good time this time! They checked that his new pains were not caused by the bowel being kinked following the surgery, but it was all fine and settled back into the correct position. He must be the only person who seemed to acually enjoy his strawberry nesquick flavoured barium meal, downed it in 1! Below are some fun pictures of the GOS activities;

We had a review with the Epsom dieticain who was lovely and very thorough, she called back after analysing his weeks diet and went through which areas he was low in; low iodine and vitamin D, quite low zinc and slightly low vitamins B. low fat and carbs and 60% calories. some of which we knew (he is on a exclusion diet afetr all) some not, he is now on a multivitamin to cover some of these.

All not helped by having no phone line since end of November (nearly 3 weeks) and no car since 12th November (well not our car, we do have a hire car) when a van drove into the back of us on the A3 on our failed birthday trip to the sealife centre for Josh. Everyone was fine just Josh and i with sore necks, Josh is fine now but i still have some shoulder trouble and headaches, but nothing serious.

Nothing more before Christmas (i hope, they only gave me 3 days warning before this Tuesday's one) except for booster injections for Aaron and Josh. We start the ne year with a paediatrician appointment for both Aaron and Josh.

In himself he is his usual happy jokey self, however he still get 30-40 episodes of diarrhea a month and in the past couple of months his tummy pains have started to return, nothing like the screaming and vomiting and passing out he had before, but we are keeping a watchful eye. He has also had half a dozen now unexplained fevers, these last anything from a few days to a few hours and no other symptoms present, hoping its just a kiddie type of thing but you never know with Josh so again, keeping a watchful eye.

- a sudden high temp had him fall asleep on the sofa

so... thats all, well done if you're still reading this!!!

scan results and another surgical review

2011-10-15T12:34:00.002+01:00

Last week we had another surgical review appointment up at GOS. All going well with surgery recovery as we knew and we saw the Prof himself who reviewed the MRI and agreed that it showed areas of abnormality most likely relating to the original mass but as it is at the base of the mesentery it would not be possible/beneficial to remove it. He felt going back to gastroenterology was the way forward with Josh's chronic diarrhea. He confirmed that the cathetar use during the operation and after could cause the toiletting problems he is having.
We are lucky to have a great paediatrician and community nurse and they managed to get our ultra sound etc results from St Helier to us before the review so we could discuss them. The nurse dropped the hard copy off on her way home and our paed called us that eve at home! The scan showed the baldder not voiding totally, and the other test showed a twitchy muscle, described as a dysfunctional bladder when combined! We are awaiting their plan....

weight loss

2011-09-18T08:12:00.005+01:00

Josh has been having a lot of diarrhea recently. strangely he managed to lose a kilo in 2 days which is a lot of weight when you're little. our 1st thought was it must just be fluid but having looked online the nhs guidance on dehydration says a loss of 6% which is what it would be or more, is severe dehydration, which he was showing no signs of, still running about playing. He also has quite hyperactive behaviour when he's having a bad patch (different to the normal 3 year old stuff we also experience!!) he's literally bouncing off the walls wiggling not looking you in the eye etc, hard to explain, but the picture below catches it a bit.

he's also still having episodes of frequent urination and discomfort, but scan for this is in just over a week.

on a more happy note, Aaron had his Baptism a couple of weeks ago, we had a lovely day despite the rain making the party have to be inside and so our house quite cosy!

and last weekend i had an enjoyable birthday :)

For now its nice not going to epsom hospital and a+e so often, although Aaron fell in his booster seat at a friend's house and we got him checked out as he had a nose bleed, all was fine though! Still got appointments through the months until Christmas to keep us busy though!

August

2011-08-29T09:21:00.005+01:00

a lovely summer minus the frequent hospital trips of last year and constant illness (diarrhea, vomiting, pain, tube feeding, ambulances). just back from our Haven caravan holiday on the south coast. we had a lovely time but Josh did have his 1st episode of tummy pain since the op whilst we were there. tummy still unsettled this month, waiting to hear back about possibly using immodium. he has his gento-urinary ultrasound and investigation sept 26th.

Ethan had his grommets and this went well. he came round from the anaesthetic peacefully this time and his hearing is good, just need to work on his listening skills now! he has had a busy summer also starting to ride his bike without stabilisers and staying afloat withour armbands etc.

lovely holiday with indoor and outdoor pools, water slide, outdoor play area, 2p machines, bingo that we won, nature reserve, beach day out, kids shows and activities.

bad night

2011-08-03T10:00:00.004+01:00

just like we used to be we were awoken in the night to Josh crying out as he had had bad diarrhea in the bed which hadn't woken him until he stirred anyway. so up at 1am for a full bed change, shower down for Josh etc and back to bed 1hr later minus pooh bear as he was dirty :(

and later again for us after clearing up the aftermath (not nice to wake up to in this hot weather) and trying to get back to sleep. After an episode earlier in the week with an accident on the lawn i hope our paed gets a response to her request to use immodium soon. At least it wasn't the previous night when they slept in the tent...!

next morning the mysterious rash was back..?

Tom's birthday

2011-08-03T09:29:00.004+01:00

This year for a special treat we went on a whole family outing to Epsom hospital for paediatric appointments for both Aaron and Josh!

Aaron

His heart rate seems to be levelling out, as in it is still the same rate but as he gets older this becomes appropraite for his age. the ECG she repeated last appointment in April showed no abnormalities. he will continue on his reflux medicene (same as Josh!) and then our grow it around 1 year. She described him as a smile on legs!

Josh

we updated her on our recent GOS appointments and their findings and plans. She is going to contact them regarding the ongoing diarrhea and the possible use of something like immodium ( he still gets 40-60 episodes/month).

He is booked in for a scan and urinary flow test at St Helier to see if he has a twitchy bladder or any other reason for his ongoing wetting problems and may then start on a medication treatment to solve this.

wee!

2011-08-03T09:23:00.005+01:00

grr! fixed one problem, made another! could be worse operation side effects i know but Josh is now weeing at times every 1/2 hr and having numerous accidents (not fun cleaning the bathroom floor at 1am!) and is sore. It all started immediately post operatively as the nurse noted he seemed to trigger bouts of pain when filling his cathetar, she commented it didn't flow easily and that it was quite a large size for him! they tested for uti whilst still in, but was negative, we have repeated this several times since discharge but always negative and yet it irritaes him and he had no problems in this department before the surgery. Has had a topical steroid cream for balenitis which soothed somewhat but has not relieved the acute urge to go to the toilet he has!

Very tired recently too, not sure if its a growing thing (hope so now he is eating well and retaining it!) but having nearly daily naps where i find he has taken himself off to bed in the middle of the afternoon!

gastro follow up

2011-08-03T09:13:00.004+01:00

up to London again this time with my lovely ex-work collegue, made a busy day somewhat enjoyable (time to catch up). A good trip all in all. nice weather, appointments running to time and saw the consultant herself who has some new plans, including; starting ranitidine a reflux medicene to see if this helps, prescribing a calcium supplement he can chew as he is dairy free, repeating blood tests to look at blood count, kidney and liver function as standard, Ig levels as previously his IgE is raised and IgA and IgM low (therefore deficient), and others i'm afraid i can't remember.

She also explained about the surgery again - removal of adhesions and adhesional bands which she too agreed was most likelly causing some sort of blockage, especially as he is now symptoms free. Also looking at his MRI there are areas of malformation within the bowel/mesentery area.

He was very upset to be told he would have a blood test but was so brave when it was actually done and determined to laugh like i told him he had once done!

june

2011-08-03T09:05:00.003+01:00

apart from starting the month with a bug, Josh is doing well. back to full energy! he still gets diarrhea and some problems urinating still (post op) but so far no screaming pain /vomiting /passing out, just some aches, but has been up in the night with this twice...

half term

2011-06-06T13:16:00.003+01:00

What a busy half term! Josh is feeling 99% better energy wise so we were able to do all we planned to; legoland, minitrains day, polesden lacey, shalford mill day, london eye day out with GOS, and wisley!

He still has diarrhea daily or more(42 times last month :)), but is managing it amazingly, it does make him feel woozy though.

unfortunately he now has another bug, a viral high temperature thing which Aaron caught 1st but Josh seems to have worse, so is back to not eating so well and sleeping in the day.

Our appointment at GOS was as expected; he is healing well, the bumps are stitches you can see as he is so thin. the biopsies were essentially normal, there were a lot of these adhesions which they removed and they feel they were the cause especially now that his episodes have stopped (none for 6 weeks - longest period for a year), the bowel is still settling down after being 'tethered' hence the continuing diarrhea.

we have a gastro appointment beginning of July, pediatrician appointment beginning of August and more surgical follow up beginning of October - september a month off!!!

recovering

2011-05-01T19:05:00.005+01:00

healing (stitches below the skin), double buggy outing, union jack pudding (royal wedding)

so Josh is coming on well. The surgery was by the way; laparoscopy (key hole) progressing to laparotomy (open) and adhesiolysis (internal scar tissue removal). He still gets some pain, slept in my bed last night because of it, especially with bowel movements, the scar looks lumpy and is sore in places. we wern't given much advice but looking around it seems like a similar recovery process in some ways to a c-section; no sit ups, heavy lifting etc for 6 weeks (probably less from what i hear). He is eating a bit better but still only small portions that go rapidly through him, so he is quite slim, weighs what he did just under a year ago but some of that i think is fluids, 18-24 month dungarees are quite comfy! He plays like normal but then will quite quickly flop and need a nap or some 'down-time', its hard to explain to him that he has to take it easy to prevent problems with the wound in this post-op period. still not back at pre-school, i might go in with him this week for the police visit.

He spiked a high temp on monday at a family bbq and that with increased pain and tiredness than the previous day meant we spent the end of the bank holiday in A+E having an x-ray etc. We went home ages later (everyone goes to A+E on the bank holidays!) and from then on he was fine, but spent the night with me so i could checks though the night. We have been to all the local national trust venues recently so that we can keep Josh busy but sitting (in a pushchair), tulip festival, egg trail, crown trail.....! The highlight was a theatre trip to see Thomas the Tank Engine, which we booked before we knew about the surgery but was perfect for cheering him up, treating both the boys and sitting still!

thanks to all who have sent cards, lent us DVDs, babysat, texted, prayed, popped round for a coffee etc.

surgery photo diary

2011-04-23T10:28:00.008+01:00

MON

TUES

WEDS

THURS

FRI

too tired for a long enough entry to say everything.

Josh had his op, came round was extremely sore and statue still for a day when not shaking and rigid with pain, lots of morphine and other pain relief. recovered steadily over the next few days; with some fast heart rate worries, bursting the glue and bleeding once, being too brave and fooling the drs he was ok...til he moved, slowly managing to have tubes removed, bad nigths for us both- me on a chair, him waking in pain for medicene, and a lovely trip to the 'cinema' (room with chairs) that they were showing the new winnie the pooh movie, decorations, dressed up characters (we missed these as he was asleep after medicene for another bout of pain) and goody bags including a cuddly large piglet - it was amazing how this not only cheered him up but actually got him to the next stage of recovery, thank you Disney!
Tom and Aaron slept at Chris', thank you Money family, much nicer than my chair by the bed! Ethan had a lovely time with Granny and Grandad and mostly only seems to have missed Aaron.
We wait now to see if this surgery to remove the scar tissue (adhesions) from the last surgery does the trick for the pain and vomiting, whether it re-forms, and for the histology result from the nodes they removed for biopsy. back for review in 6-8 weeks.
Josh is able to play for short periods but gets tired and in pain easily and is not good at knowing his limits, his bowels also are not very settled. for now its a light diet, lots of pain killers, taking it easy, sleeping with me in my bed,

In hospital

2011-04-08T21:33:00.005+01:00

funny dinner!!
Josh had a great wednesday hunting for Easter eggs at toddler group, but at 1am woke up crying with tummy pains, he was soothed and slept as far as we knew til 6am when he cried again and retched, same at 7, and was actually sick at 8.
My mum helped me juggle Aaron and feeds, Josh and his sickness and Ethan with an end of term sininging assembly. By 10.30 it became apparant that as he was still sick and the pain seemed more, that we needed to go to Epsom hospital.
There he continued to be in pain and sick, but as it was day time at least we were given a cutained area and a bed. He slept on and off all day only waking to be sick and in pain. At 5 he was sicker than ever so they decided to admit him to rehydrate (iv) and keep an eye. More pain until midnight but no more sickness and in the morning full of beans and eating again.
he was discharged in the morning when as usual he had recovered. he was ok all day at home, just a bit tired perhaps. It was such a nice day and school had broken up, and Josh usually bounces back totally, so we went to the pub for a family dinner....
after a nice play and some dinner it started up again and he looked grey with pain so we had to come home, we debated going home via a&e again but he's in bed asleep for now.....

here we go again

2011-04-01T16:47:00.009+01:00

this month Josh's pains have been there daily niggling at him and then occassionally a flare up. Yesterday was one of those, he was ok during the day but some diarrhea, then just before tea started to get squirmy, couldn't manage hardly any tea and kept getting worse, then was ok for a patch and managed a bath which i thought might help, but by mid evening i was up and down the stairs like a yo-yo again as he kept being woken and crying. Then just after i had given Aaron is last feed josh cried very loudly and said he was going to be sick, unfortunately we were too late so lots of washing for me today, but after that he settled for the night. Today he has been fine, just not eating huge quantities and tired enough for a lunch time nap. 17 days til laparoscopy.....

monsters

2011-03-20T21:18:00.007Z

so i think its quite likely based on Josh in the past few weeks, that the laparoscopy will go ahead. he has had numerous mild episodes which pass quite quickly but make him tired and grumpy and seem more often than before. today he had a bad day with several hours of bad pain and sleeping it off. then he picked up during the day, but is in bed on and off crying out again now and was retching before bed with it. ( I now talk to him about the monsters in his tummy which he seems to like!?!) so we are in on april 5th for a pre-op assessment

laparoscopy now scheduled for the 18th

... and sick over night

3 weeks and counting

2011-03-03T22:04:00.004Z

3 weeks today since Josh had a major episode, although he was a little uncomfortable today and with diarhea too.

He had an appointment at GOS with the surgical team who have decided that a laparoscopy is the way to go. they will do this as exploratory surgery to see if they can see the cause of the problems (its a keyhole scope with camera through his tummy button) if there is too much scar tissue from previous surgery they may not be able to, and if they see a problem area they will 'correct' it so we will also need to sign surgery permission forms. This is scheduled for 12th April. We were pleased they appear to be listening but are concerned for him to go through this. However they said, when asked what if he has no more problems before then, that then in that case they would postpone (not cancel) and then review again nearer that date. They will not do this lightly as it could also cause problems due to more scarring and it is after all surgery with general anaesthetic and all the risks involved. Our hope is that he will continue to be well but if he is not then we will feel more confident in going ahead.

We finished the day with a trip to the Natural History museum and then a meal out getting home at 9pm with 2 tired boys!

Meanwhile Aaron had his scheduled scan due to his feeding gripes and Josh's history, during which they found what they thought was a duplex kidney but no reflux. They referred us to another local hospital for a second opinion who confirmed this was the case and infact that he did have quite considerable reflux. However my understanding is that it looked otherwise ok and unless he has a urine infection they will not test further, and that i am to take urine samples if he appears unwell. His medicenes are for review to help him be more settled with the reflux. it was for a while another worry, but we feel mostly reassured that it will not be an issue just somehting to have in the back of our minds.

hot Josh

2011-02-14T21:02:00.005Z

the tummy pain rumbled on and on Wednesday he also got a 40deg fever, this passed by the morning and he was fine all morning at preschool and around sainsbury,s but did start to say his tummy hurt. however at ethan's school pick up he carried on saying his tummy hurt and was very quiet and the fever came back and the pain got worse. we went to Epsom who brought his temperature down but could see no other cause for it. since then he has been fine, no fever or tummy pain (well til this pm...)

this week

2011-02-04T20:05:00.003Z

a week of tummy gripes, starting tuesday with a sudden tummy ache with him writhing on the sofa for 1/2 and hour and then fine and playing with Ethan again. a slight tummy episode at sainsburys on weds, but short lived. on and off all pm thurs and during the early eve increasing in severity at 3am, then in our bed 6am, vomiting 7am til 9, pain til 10 then sleep til 11.30, then totally fine.
no diagnosis yet, still no phone call of results from GOS, and no chance to chase it up as was at GP with Aaron this pm as not feeding very well. He now has ranitidine prescribed for reflux, pots to provide urine and stool samples, and ultrasound in 2 weeks
poor Ethan got himself dressed as usual, made his own breakfast after cutting his own slice of bread with a child knife and eating burnt toast before i got downstairs, and had a lift to school(thanks Jules) whilst i was busy with Josh so not even a goodbye kiss! he's a star!

no results

2011-01-29T08:39:00.004Z

so after Tom taking the day off, which he doesn't do lightly (ie. he didn't come last week for the MRI), paying nearly 40 pounds in travel costs, working out all the practicalities like packing, Aaron and feeds, who Ethan would go to after school, staggering there as we both were at the drippy headache stage of our colds, worrying and wondering, and taking Josh yet again to hospital.....
our results were not back, the consultant was not there and wasn't the previous week either, so MRI will apparantly be looked at next week and we will get a phone call. We also have an appointment in a month and in the meantime will worry whether he is going to have another bad episode............
so sorry to all those waiting with us nothing to report yet

MRI

2011-01-21T13:50:00.004Z

gave me a shock when i found him sleeping like this! Mri was done yesterday under general anaesthetic. a very busy day to fit in as well with Aaron's feeds, and getting up at 5.30 as we had to be there by 7.30. However although never nice to see your child put to sleep, it went ok and results are next week. paediatric appointments for aaron monday and josh tuesday too next week.

New Year update

2011-01-09T19:58:00.005Z

So not a great start to the week Tom went back to work after Aaron's birth, with having Josh in A&E again, the end of that week was the start of the snow, and Ethan got a sickness bug. the start of the next week was my Granny's funeral and then Josh and i got the bug too. Tom had a hectic night looking after Josh, sterilising his hands and then teaching Aaron to bottle feed!
Aaron had an appointment with Epsom Paediatrics who are sorting out whether he needs a referral and what sort but said he seemed fine in himself, but heart rate was still on the low side.
We had a nice Christmas, albeit a bit sleep deprived what with feeding through the night and clearing up diarrhea as Josh was having a bad patch, and Josh managed to open his presents and enjoy the day despite a bad start with a tummy ache.
Then it was on to Ethan's birthday and party, then a quiet New Year at home awake for Aaron to toast 2011!

Things seemed to settle down a bit comparatively but it was not to last as on the 4th whilst out painting pottery Josh had another tummy episode. We got home and let him rest, then continued with our plans to visit my parents expecting him to recover as usual (little did they know that as soon as they had mostly recovered from the flu they would have Ethan tro stay for the next 4 nights!). After about 4 hours however he started to be sick and a short while after that when it did not stop we went to A&E. He continued to scream and be sick so they admitted him. By late eve he seemed to be starting to pick up so i left Tom over night and went home with Aaron so i could feed through the night. The next morning he was still bringing everything up which is unheard of and this continued until the afternoon when they finally put a drip in (IV) and soon after a Ng tube to drain his stomach. By this time he had had a couple of Xrays and an ultra sound, pain relief did not seem to help and Josh was alternately screaming and shaking with pain and rolling his eyes back and being semi unrousable. Epsom Drs contacted GOS as the ultrasound/xray seemed to show a perforated bowel - somewhat similar to a burst appendix with the peritonitis risks, they looked at the image and then we were transferred to them by ambulance, blue lights etc, dr accompanying us as it was a 'surgical emergency'. GOS did 3 of their own xrays and decided it wsan't perforated much to our relief as we had been extremely worried especially when he was lying on the bed with just the whites of his eyes showing.....
he got better with the previous treatment and the IV pain relief GOS gave, but remained nil by mouth til the friday to rest his bowel. on the thurs they did an ultrasound and they gave him an enema to clear the bowel but did not do the planned Ct scan on fri as he was much improved and it was a question of balancing the radiation with what was best for him, as he had an MRI planned already for the 20th which would be clearer they left it. Friday he started on fluids and then foods slowly and tolerated it well, so once he had shown he could manage lunch the next day we were free to go.

so we are home again and feel as if we have a bit of a ticking time bomb as it strikes with no warning, and we now have the new concern of perforation

welcome baby Aaron!

2010-12-14T17:39:00.003Z

baby Aaron David was born 29th November 2.12am weighing 7lb 1oz. He was not quite on time, just over a day late! Birth went ok if a little quick for my liking so no time for the epidural, however i didn't end up with the threatened c section which i had been nervous about. We stayed in for a couple of days so he could have an ECG which they then repeated, and decided, although his heart rate was low, he was fine to be discharged and referred him for follow up. So braving the snow we went home!
He is now 2 weeks old, time flies when you are sleep deprived!, and is doing well

Josh was very considerate over this period and barely had any tummy pain and no admissions to hospital, however yesterday when he was meant to be at a long awaited party of his good friend he had another bout, ending up with us having to leave the party and go to A&E where we spent the rest of the afternoon 4+hours. After the intial hours and a half of pain he then slept away our time at the hospital as is his usual way of dealing with it all, before waking up back to normal again but a little off his food and flooded his bed with diarrhea overnight

surgical review 11/11/10

2010-11-11T15:46:00.003Z

staggered up to GOS today with just over 2 weeks until baby is due. treated ourselves (well me mostly) to a taxi from waterloo which considering the weather was good (but got the underground back as its now ok for labour to start!)
generally a good appointment, running to time and a full hour of their time. in summary it looks in their opinion to most likely be adhesions from the previous surgery rather than an intususeption, and when he has pain and vomiting he MUST go to local hospital incase of a non resolving obstruction. The registrar seemed to be saying that it was a balance of how he was and how much intervention which we agreed with but at one point we thought he was going to say Josh had to live with it! However Prof.Pierro then came in and thought that it was worth doing a MRI, and re-explained that he had to leave a significant amount in situ and described it as extensive. Also that it was not the sort of thing easily cured as it is quite complex, and the registrar said it was a bit of a vicious cycle where surgery to remove adhesions could cause more as could a laproscopy.
So MRI will be in about 6 weeks and then a follow up the week after with their team again.
Josh has had 4 bouts in the last week of various dgrees of severity, so it will be good to see if they can see what's going on.

ps - baby update
i have had a couple of occassions with flasing lights in fron of one eye requiring yet another night time visit to EGH but they did not feel it was related to pre-eclampsia which was their main worry. whilst we were in though the baby's heart rate had dipped lower and we did wonder if they were about to deliver. However in other ways it is still very happy even with a rate lower than 100 most that eve, so we got to go home, she did say though that if it does that in labour i'll be straight down to theatre...

half-term

2010-10-28T22:09:00.003+01:00

we had a particularly bad day today with Josh. he was fine to start the day, jumping on the bed to wake Daddy up at 8.30 but writhing around by 9am after 1 spoonful of porridge, progressing to screaming so much we had trouble keeping him in his car seat to get him to Epsom.
Great Ormond Street had requested an Ultrasound when this next happened, which was easier said than done. He was seen initially in a+e as we were quite worried about him by the time we got there, where they pushed hard for him to have the ultrasound but the best they could do was 1pm even though we were there before 10am. They did xray (where he started vomiting) and then sent us to the ward where they gave him a suppository pain relief and he spent the next few hours writhing, crying, saying ow, more sickness and drifting in and out of awareness in between each bout of pain. gradually the pain subsided and he had his ultrasound (which was 1pm still despite saying they would try and bring it forward) which anyway showed so much air in his small intestine that the technique would not work (the waves just bounce back apparantly). the x ray showed bowel full of faeces so they did a barium swallow like we have had before but this time during a pain episode, so xrays at 3pm and 5pm. He wasn't keen but eventually agreed to drinking the strawberry nesquick flavour barium in exchange for a flump marshmallow bar!
We were allowed home as he had picked up, but giving him dinner started the pain over again so we'll see how the night goes... their plan is to start him on 'movicol' to see if that helps and we have an appointment at Great Ormond Street surgical team on the 11th Nov (hopefully baby will stay in place until its due date!)

October

2010-10-21T19:26:00.007+01:00

well Josh is now tube free and loving it. He went a bit mad for food for a while unsuprisingly and got tummy ache from over eating or cried when we tried to limit what he had, all quite unsuprising really! He has so much more energy, not just tired and wanting to watch telly but driving us mad with charging about! His bowels are readjusting, and is getting back to a sort of normal for him, less constipation, some diarrhea. Tummy aches are perhaps more often but nothing awful (comparitively) for a couple weeks, and no sickness either.
Kind of him to let me focus on the baby and impending birth...
baby still has low heart rate and gets weekly checks to see if it drops further but is very active (ie kicks me a lot). the repeat st georges scan was ok, no problems with the baby they can see but they recommend an ECG when its born and a discussion with the obstetrician about monitoring in labour and that they may well 'panic' if the heart rate is 100 in labour.....
i'm still tired and anaemic and low blood pressure especially in the mornings. Just 5 weeks to go though.
Obstetrician for me and blood tests for Josh in the morning, lovely!

latest news

2010-09-30T14:57:00.005+01:00

baby 1st

heart rate monitor on sunday was ok, still low but with normal 'variations' and 'responsiveness'.

special scan at St Georges on Monday was good, still low but no heart defects, fetal compromise or block. repeating in 3 weeks to see if 'findings are stable', they didn't believe it was related to my medication as i'm on such a low dose but state that is the only explanation they can find for it.

scan on tuesday was really a repeat but allowed us to make a plan for the rest of the pregnancy which is; to cancel the growth scans booked, keep appointments booked at St Georges, and for obstetrician, and see the midwife weekly and if heart rate dips lower go in for a trace again. the nice radiographer also gave me a really long scan including a 3D glimpse (it was hiding) and some free pictures

and Josh

on tuesday i got home to a message saying could Josh come up to GOS the next day, it was what we had been waiting for but still after a tiring few days not perfect timing!

he is off his elemental diet and tube feeding (waiting for confirmation from the dietician) and back to the exclusion diet i.e. no dairy/soya/gluten/egg. As it is now apparant that it is not diet related

he has blood and stool tests requested and if there is any sign of malabsorption steroids are an option

he is being referred to the surgical team for possible laproscopy due to the liklihood of some sort of obstructive episode mainly intersuspection which he has pre-disposing factors for (surgery, enlarged lymph nodes, malformation)

they have also advised we go to our local hospital when he has an 'episode' incase this time it does not resolve itself and that they should do an ultrasound when this occurs to see what is happening (trouble is he nearly always seems to get sick at evenings and weekends when they don't do ultrasound)

i wonder if there is any chnce this can be completed before the baby comes...?

Josh and Me

2010-09-25T10:36:00.004+01:00

Josh had another of his episodes yesterday, lasting from his morning feed til bedtime. lots of wooziness, tummy ache, ow-ing, salivating and denial. All as usual but lasting much longer, saved from actual sickness (which looked iminant) by i think dropping some of his feed under advice from the dietician. So far he has woken up ok today.
The day before this i went to see the midwife, mainly to chase up a scan appointment for some low pain i'd been having, and discovered they had booked me in for an abdominal scan not obstetric, hence the delay. Whilst there they did the normal baby checks and found that the heart rate of the baby was quite low, there was then a busy period where they called an ambulance, sent me with Josh to Guildford Hospital (not Epsom as less than 35 weeks) where we met my Mum whilst they decided whether i needed to go to theatre. They decided whilst low the heart beat was normal so observed us for several hours and took bloods etc.
The next day i went for the planned scan at Epsom, which was as suspected was the wrong sort, so i spoke to a midwife who amazingly got me in that morning with a great obstetrician who was decisive and thorough.
In a nutshell she now has me booked in for a repeat CTG (heart rate study) tomorrow, St Georges scan Monday for the babys heart, and a doppler study ultra sound (blood flow?) on Tuesday
I'm trying to rest and take it easy, at least its the weekend, but that rather depends on Josh too!

2010-09-17T16:20:00.002+01:00

so the constipation continued and Josh ended up with a suppository, a thing i never thought would happen! anyway with that then sorted all was ok til yesterday when he did his tired thing then tummy ache and woozy, at 4 o'clock when we got back from collecting ethan he then threw up all over me. we spent 4hrs in a+e getting him checked over and observing whether the dioralyte stayed in. but as ever he bounced back quite quickly having emptied his system, and has again been ok again today...so far....

another week

2010-09-12T20:22:00.004+01:00

after being fine all day, he got tired at the end of saturday and then spent 1+hrs throwing up again, including ejecting his feeding tube with the force of it. we had it put down again at Epsom on Sunday. he was not really himself the rest of the day but no sickness or diarrhea, until monday when he exploded all over the lounge carpet, then tuesday all over his little chair. We spoke to the dietician who decided after talking to his consultant to change formulas to a less osmotic one (draw less water into the bowel). he has not had sickness or diarrhea since (hooray) but infact has had no bowel movements at all since then (boo) so is now on a mild laxative and EXTRA fluid (?)

a busy week

2010-09-04T13:31:00.004+01:00

after being discharged friday we spent the weekend getting to grips with the feeding regime. Then on tuesday we made an early start travelling to GOS for a 9am ultrasound and then what turned about to be about 3 hours for the barium follow through study. We still managed to fit in a quick look round the science museum though as we had promised the boys...
tired we got home to a late tesco delivery, a meeting for Tom and an answer phone message saying no respite time the next day. Thursday Tom was back to work and i woke up with coldsores...
then Josh was lethargic and just not himself on Friday so i took him to the GP who said ears throat temp etc were fine just keep an eye on him, but by the time we got home he was just unable to play and lolling on the sofa, not talking. So we went into Epsom Hospital feeling silly as all i could say was he was tired and not himself, that is until he threw up EVERYwhere in the waiting room (like a scene from the exorcist said the nurse). He then felt much better so we went home and kept an eye on him and he is fine as usual this am!
i feel some 'battle' conversations coming on on Monday seeing as opur next appointment is not until 17th Nov we were told in the week
we also got a letter saying that Ethan's blood tests need repeating as the wrong sort were done
i have a growth scan on Monday
busy busy!

2 nights in Epsom hospital

2010-08-27T15:49:00.005+01:00

he was in fact quite dehydrated with low blood sugars, reduced kidney function etc. So we had an IV til the next morning and some 'hits' of glucose! and then made the decision that the NG tube would be needed to follow the diet considering the success we'd had so far and the reserves he now had. He was not happy to have it placed but got used to it fairly quickly, not too keen on the feeds and they certainly have not improved his diarrhea, but in some ways easier this than constantly trying to get him to drink. As ever he was great, coped with all the canula's and attempted canulas, toe pricks, plasters and tube placement, with little crying and a smile soon after.
Home again now and coming up with a new routine for the 5 feeds a day he needs

days 3-5

2010-08-25T12:23:00.003+01:00

day 3 finished with a total of 330ml, then day 4 only 60ml but he did drink 330ml bottle of water. However that night he woke up at 9am and was sick and then again on and off until midnight before resumming in the morning. At the moment about to go into Epsom ward to assess for dehydration and possible causes (could be a virus) and possible IV fluids or NG tube....

day 2-3

2010-08-23T12:59:00.007+01:00

yesterday not so good only 450ml drunk out of the 1000, today looking set to be even less. blitzed the milk with ice in the blender in the end and called it a slushy not milk and he eventually drank the 150ml cup he was given for breakfast at lunch time. having Ethan drinking what looked to be the same next to him certainly seemed to help. still lots of tears :(
add your creative ideas to the comments section below please...

Day 1 of diet

2010-08-21T21:09:00.002+01:00

despite a tearful start when he realised that the new 'milk' meant no porridge for breakfast (ie that it was just milk nothing else), we had an ok day. he didn't ask for any foods again and managed to drink 2/3rds of his daily requirement. we also managed to juggle eating in shifts so he didn't have to watch us get to eat

new 'diet' again...

2010-08-19T09:02:00.004+01:00

after the recent a+e trips and the problems we have been having with Josh and his tummy they brought his appointment forward as an emergency one for yesterday.
we were convinced we would be talking about possible obstruction and what tests / plan there would be for that as they had said this at the last appointment. However she thought it sounded still like other bowel troubles and wants to see if it improves with diet and give his bowel a chance to heal also, so......
for the next 6-8 weeks at least he is on an 'elemental diet'. Basically he has 5 +cartons of a complete nutrition drink only, for every meal, and only water/ice are allowed with it. Initially she thought he would need a ng tube again to take these feeds but the dietician thought it was worth a try to see if he will drink it orally first, however it is still a possibilty if he cannot manage enough to sustain himself.
This is obviously going to have quite an impact on both him and us as a family, with a lot of changes to our meal times and what we do socially etc, and i can't imagine he'll be very happy not to eat after we have sucessfully got him being a really good eater.
Then there is eventually the transition back to eating again...

sick

2010-08-06T20:26:00.005+01:00

Another severe abdominal pain attack last night.
He had had his dinner and a bath after running about happily all day, and then after being put to bed called out "ow ow". We brought him downstairs and soothed his tummy pains as best we could but after it hadn't subsided after half an hour i decided to take him in to Epsom, fully expecting a recovery by the time we got there.
However the pian continued and then whilst we were waiting ('open access' seems not to mean very much) he threw up all over the floor, some kind people gave us their sick bowl and another lady got some paper towels, just in time for the next bout. He settled for a bit then got more pain and then a short while later another vomit. Eventually they took him through to a&e itself from the waiting room leaving quite a bit to clean up (that'll teach them to keep him waiting!). He was sick one more time and lot more writhing and crying with the pain but then settled to sleep (he had been drifting in and out the whole time since we were at home). They gave him blood tests and admitted him for observation (midnight by this time), but in the end at my request did not hook him up for IV fluids. As the nurse commented after doing her 'observations' he was very deeply asleep and had her a little worried until he stirred at having the spare plaster removed. i had been thinking the same thing after he hadn't even woken up when they put the canula in his hand, and was very pale and cool.
After the night of sleep he awoke his normal self if a little tired demanding breakfast which they found hard to provide given his special diet.
We then had a nice afternoon as planned watching Toy Story 3 at the cinema, and are awaiting GOS follow up and hoping my request for an appointment before October on tues pm and their update from the hospital will help

ultrasound etc

2010-08-04T08:33:00.004+01:00

Josh had his ultrasound and fluroscopy test yesterday (a barium drink and then a series of xrays, then a break before another xray to see the barium lower down his system).
the barium study looked normal at first appearances but the consultant will review it, so the ditsnded bowel loop must have been an acute finding in a&e.
the ultrasound did not show regrowth of the lymphangioma but did show numerous enlarged lymph nodes in his mesentery (abdomen). he has had this in the past and it might account for some of the pain, it is interesting to see despite the strict diet he follows, so probably not caused by allergy.
they suggest repeating the ultrasound in 6 weeks to check if they are still enlarged and that it is not progressing
meanwhile we are awaiting the follow up appointment with the gastro dr.....

blue lights

2010-07-22T15:41:00.003+01:00

since i last wrote, Josh has had a couple more tummy aches and more diarrhea. This month looks set to be our worst in a while for quantity and leaks.
last night he had particularly bad abdominal pain, writhing around on the sofa as per usual unable to stand or hold up his head, at one point he seemed to get comfy and fell 'asleep', i left him but sat with him for about 20mins at which point i tried 'waking' him and failed, even picking him up shaking him calling him kissing him and smacking him did not rouse him in the slightest, he remained floppy and pale with his head just rolling side to side in my arms. We called an ambulance who were very good (actually the 1st we've called ourselves for him) they sent a paramedic ahead and josh was responding minimally when he arrived (half open eyes and then back to 'sleep') but when the ambulance came he was more alert. They took us to Epsom anyway for a check over and he was by then fine (busy night it was 5+ hours after the event byt the time we were seen). We have a follow up appointment tomorrow with paediatrics.

baby #3

2010-07-22T14:18:00.002+01:00

i had the 2nd scan on Monday and baby is growing fine and hear rate is normal despite the beta blockers, nothing abnormal detected except the umbilical cord is lacking and artery called a '2 vessel cord' - its meant to have 3; 2 arteries and a vein.
Not sure what this means yet, i have the obstertrician anyway tomorrow so i'll ask then. reading around on the internet suggests a few things to watch out for though

JOSH

2010-07-08T21:25:00.003+01:00

Another sucessful appointment for the week, and the first in a long time for Josh.
it seemed none of the information from his recent A+E event and Epsom/my phone calls had reached them, so we had been put on the registrar's list but managed to sucessfully request to see our consultant. we then filled her in on his ongoing diarrhea, and more recent severe tummy pains. She was concerned to hear this and Prof.Pierro happened to be at the clinic to see another of her patients so she got him to come in and be part of the discussion. It was great for him to be able to explain verbally face to face about the surgery and how widespread the condition was in his small bowel mesentery and how it had to be left in situ as it was too tangled with blood supply to the bowel and benign so better to be left there. They confirmed that the pain could be caused by adhesions (scar tissue) from the surgery, twisting, obstruction issues, and they would need to do more tests to see. If the tests show nothing then they had some other ideas to test for, if they show obstruction then we may have to consider more surgery.
So on the 5th August he is to have an Ultrasound and an upper Gi study which is series of xrays with barium contrast to enable them to see the bowel more clearly.
he is also to continue with his food exclusion diet until we know what else is going on. He has a referal to the acute allergy clinic for his peanut allergy. and he has a new medicene to try to help with the colitis type symptoms.
so in all a really thorough appointment and we feel that Josh is being taken care of.
All this is due of course to the fact that the episodes of pain (where he cannot hold his head up and gets very sleepy after) are getting more frequent; including today after a bad nappy day he went from fine helping with the shopping to me calling my Mum to give me a hand in the carpark as he was doubled up in my arms

ETHAN

2010-07-08T21:09:00.004+01:00

Tuesday's appointment went well, we had both the dr we had seen a lot of and the consultant 'professor' there who we had met and who had done the biopsy/operation.
The results were good, no malignancy and the wound is healing well. He had had a severe infection which they have not managed to identify despite many lab tests and 'stains'. Results of 'giant macrophage cells' and 'granulomatous' which i think indicate infection, which we already knew! He did say he had never seen anything like it in such a young child and would get paediatrics to check over their results and be happy with his immune system.
He has also been given the ok to go back to school full time. so we are just keeping an eye on any recurrance of redness swelling or hardness, but he looks really well.

lots of appointments

2010-06-22T19:47:00.004+01:00

todays appointment was fine, wound is healing well but no results of any help back yet. lymphocytes have been raised but are at least falling but were atypical whatever that meant, and toxoplasmosis result was positive but not for recent exposure. they would still like him off school for a couple of weeks until the next appointment and they "know what they're dealing with". however we may if he still seems ok get him to go back part time next week. He is finally off the antibiotics so maybe he will start to feel less tired. Not back for 2 more weeks for any more results.
Hopefully we should get the new car tomorrow and this will make the next few busy weeks easier; on Monday Josh has his 'second opinion' from St Helier and Tom is out 3 nights with work, the following week Ethan has his appointment on the tuesday and Josh is up at Great Ormond Street on the Wednesday and Tom is out both of those nights!

stitches

2010-06-17T22:10:00.002+01:00

Ethan had his wound re-dressed today which was an event! poor boy, we have to do it at home until tuesday every day but he was braver this evening. looks very sore :(

he has sterile honey to apply as an anti-bacterial cream, yum!

after that appointment in Guildford it was my turn for a midwife app locally, during which she couldn't find the baby's heartbeat after 20mins of trying inch by inch so sent me for an ultrasound in Epsom, after a bit of a worrisome wait the scan confirmed all was ok :)

biopsy

2010-06-16T14:51:00.005+01:00

So on Tuesday they decided they would operate and do the biopsy/drainage op. He was happy as they put him to sleep with gas and then put the canular in his hand, but came round screaming as usual. he was then very queasy, and was later sick a few times quite dramatically so had some anti sickness meds which eventually settled him and allowed him to eat a late supper.

during the op they decided to only remove from the jaw line area previously operated on and not the neck node for now which they had considered in clinic that morning. they drained what they could and removed quite a lot of necrotic tissue before sutchering and leaving a drain in over night. tissue all sent to the lab for testing.

He is now home and fine just a little sore and being pampered to make up for the bits about hospital he hates; 'scratches' and plasters and the removal of the drain which looked nasty even to me.

we are back tomorrow for wound care clinic and tues and the following tues to see the consultant, with no results likely until the last apppointment at least :( He is off school until we see the dr again on tues to prevent complications from other infections, and remains on the strong antibiotics until then too. we are closely watching for more swelling or redness.

friday

2010-06-13T19:13:00.003+01:00

friday's appointment was thorough, with a really nice consultant paediatrician, who started the story with us from scratch again. He felt Ethan's lymph nodes, a few more of which seem to be 'up' now, and so added a chest/abdominal xray to the day. He also did the blood tests the others had suggested, and felt that excising a node for looking at under the microscope would be a good idea. The chest xray came back clear no deep nodes were swollen so some good news i think. also initial bloods were fine, kidneys and liver normal and blood count ok, but a bit anaemic still. he is looking quite a lot better, redness and general swelling wise, but the hard edges of the node remain the same. can't decide what i think they will do on tuesday, so we'll have to wait and see.
on a different note on wednesday eve our car had a fatal break down, which is not what we really needed at the moment but amazingly we have managed to get it taken away by a car breaker and bought a new one already!

latest visits

2010-06-08T22:08:00.004+01:00

on friday we went in with ethan to guildford hospital for our 11.30 appointment but they were busy as always and were seen at about 1pm, they decided to ultra sound as we had expected but this could not be done til after lunch break 2pm+ and was finally done at around 3.30pm. all this time ethan was kept nil by mouth which he was very cross about! anyway the results showed no fluid to drain and no change in the size of the lump so we were sent home til tuesday, with plans top start considering biopsying properly to look for infections and consider nasties like lymphoma.

today we were back and saw the consultant (on friday the dr thought we'd be better being 'consultant led'). the redness looks decreased and less angry but the lump the same. the plan is to keep going with the antibiotics and go back in later this week for blood tests etc with paediatrics, and then return next tuesday (unfed so can be nil by mouth)and unless there is dramatic improvement go in for general anaesthetic again for a biopsy and perhaps MRI. he also needs his temperature monitoring and will not go back to school this week at their advice. The admission is all booked for next week so it looks more likely than unlikely.

we are still waiting for josh's review and will be at my Obstetrician appointment tomorrow to check me and my medications in regard to the pregnancy.

oh yes and did i mention...

2010-06-03T10:53:00.003+01:00

i'm pregnant with baby no.3 due end nov, suffering with the normal symptoms and more; sickness, tiredness, underactive thyroid, tachycardia, extra monitoring due to my medications, and backache type siattica
not helped by the eventful past 3 weeks!

and whilst all that was going on.....

2010-06-03T09:13:00.004+01:00

in the meantime whilst Ethan was in hospital Josh was camping out at his grandparents perfectly happy if a little loose in the nappy department, but on the saturday had nasty tummy ache, was later sick (all over my Mum) before having a long sleep. we wondered about it being a tummy bug and were concerned it was a Josh tummy thing, but were tied up with Ethan. Monday eve after his bath he got tummy ache again but worse he cried and cried and just couldn't get comfy and then started to look grey glazed over and eyes rolling back in his head. we zoomed him in to Epsom A+E by which time (of course) he had started to settle but was still gripey and wan. we saw a great Dr who listened carefully and thopught his bowel sounded a bit quiet and decided to do an xray given his history. by this time he was all but better and was an angel lying on the couch for the xray (even though being pregnant i couldn't stay in the room), when they bought the results back i was beginning to get embarrassed in front of all the other ill people as Josh was trying to play slides down the back of the bed! so i was suprised when they said the xray showd some area of abnormality - a distended loop of bowel.
trouble is they have nothing to compare it to as he has not had an xray since the surgey 18 months ago.
they offered to have us over night for observation but as we were due back for ethan's review and possible surgery repeat the following day and he was now acting fine we opted to go home and watch him closely ourselves (Tom on Ethan's fllor and monitor on for Josh in with me!) before returning for an appointment with his paed the following afternoon (as long as Ethan was not in theatre)
at his appointment he was still well albeit with quiet bowel sounds, they agreed to review with GOSH and we have since heard they are trying to bring our appointment forward. the trouble is knowing whether this is a chronic problem with his bowel ever since the surgery causing his troubles since then, or an acute finding causing the severe pain
it was scary how quickly he went from playing happily in the bath to almost unconcious it seemed with the pain (10 mins?) so we will be pleased to get to the gastro team and see what the plan is
meanwhile both boys are at home running around being loud and driving us mad!

on no not Ethan too!

2010-06-03T08:47:00.005+01:00

about 3 weeks ago Ethan came down with what initially looked like mumps but he had the MMR so they said it was probably some other similar virus but ordered a swab kit anyway to be sure. i went to visit the GP again towards the end of the week as he wasn't too much better and the swab kit hadn't turned up, she looked at his neck/cheek and said she'd like him seen by the paediatricians at Epsom via A+E, they decided it looked like an infected tonsil and put in a canula and gave intravenous antibiotics before (to Ethan's delight!) transferring him by ambulance to Guildford.
There they decided it wasn't tonsils but a tooth abcess and scheduled surgery for the next am (it was 1am already by this time). it was all a bit rushed and the combination of travel sickness fast driving lack of food and morning sickness meant i was the one who was being sick on the ambulance transfer!
during the little op they found his teeth to be "pristine" and that it was infact an infected lymph node. they took pus and cells from this to test in the lab, but despite my worries they eventually (a week later or so) came back normal - no malignancy and no unusual bacteria.
he in the meantime ended up back in again the following week on strong IV antibiotics as the infection had returned and ther we stayed for the next 4 nights. it was a miserable time as the iv irritated Ethan's veins and he cried throught the infusions.

however we are now home again on oral antibiotics and yesterday seemed to be the start of some progress, he is still red and swollen but diminished slightly perhaps and certainly oozing, better out than in i'm sure!
ultrasound has shown it be solid and therefore not drainable again, he was reviewed in clinic on tues (our anniversay) and will be reviewed and possibly re ultrasounded on friday (tomorrow)and another review tuesday

long time no post

2010-06-03T08:40:00.004+01:00

sorry i didn't realise i hadn't posted in so long!
it took a long time but we felt that doing the diet was beginning to have an effect, quite a lot of constipation and still over a dozen diarrhea nappies a month, but that's a better number than it was, and it isn't such a flood when it happens either!
however he seemed to be having more tummy aches and 3 quite severe ones culminating in an A+E visit...

...maybe not!

2010-04-04T09:43:00.004+01:00

having passed a large 'plug' he has diarrhea again, so much for that!

update: 12/4 not as bad as we have had but after a few weeks of only constipation he's had several bouts of diarrhea for no apparant reason, particularly bad today :(

Doing ok!

2010-03-29T21:33:00.004+01:00

its up and down and has been worse before better, so who knows but for now - doing ok really! we're getting to grips with the diet with help from my Mum's baking! and Josh is having an ok patch, still bouts of diarrhea, but not daily, and so his weight is increasing. we are however suffering from more constipation than normal, so something is not right, and we have been here before, for meanwhile though we will enjoy the less frequent changes and improved nappy rash and better weight. We are also awaiting a referal to another paediatric gastroeneterologist - more local, to see if they can shed any light on his issues

effect of diet no.2

2010-02-20T16:48:00.005Z

cooking 2 different white sauces for the boys. one normal one no dairy no regular flour and no cheese!

a success! Josh's no flour, no butter/milk and bizzarely no egg pancake fro Shrove Tuesday

tummy achey and swollen

and that night...

so basically not so great. this was about 1am last week (and just one example). despite strictly following the no dairy/soya no wheat/gluten no egg and no nut (and not even chocolate) diet, he continues with his pattern of unpredictability, and the cycle of constipation, plug release, diarrhea (flood gates open!)

tired

2010-01-21T13:02:00.003Z

too tired to post properly so will update the site soon with full info. however ultra sound last week was stressful but no change; so no re-growth for now. gastro yesterday was delayed by 2 1/2 hrs, plus saw reg not normal dr, and now gluten egg and choc free on top of the dairy and soya. they seemed to just throw ideas at us, didn't feel like he was treated as a real child and review in 6 months

Happy New Year!

2010-01-06T10:41:00.004Z

well the diarrhea continues, including a daily shower day or night normally, although there are days of constipation and swollen tummy too. Last night we could smell he needed a change on our way to bed as soon as we left the lounge; door to, up the stairs and his door closed, going in was a brave decision! he didn't like the waking for a shower down but it was unavoidable.

his pre-christmas stool sample came back negative as expected to the usual tummy bug culprits, and the other sample confirmed no other irregularities that they were checking for like lactose intolerance. the bloods were also negative to the same plus IgA levels (immuno stuff) and the other allergies they checked for (including chocolate), although his total IgE levels were again elevated (possibly showing some allergy or other).

we were meant to have an impromptu appointment tomorrow with the dietician plus paediatrician together as they were worried about the weight loss (i'm not too much as i think its expected with nothing staying in, and he's full of energy). however with the snow we'll have to wait and see (snow day for both Tom and Ethan today)

Merry Christmas

2009-12-27T08:16:00.005Z

Poor Joshie started the day covered in diarrhea, ruining his reindeer sleepsuit(new outfit needed for the morning), and needing a shower down so starting the day sobbing and Ethan moaning he wanted to go down and see his presents (i made him wait for me!). he was hot and grotty but perked up for presents despite his swollen taught tummy. he then had a sleep before going to my parents where he had another sleep as he was getting grotty again and then another change of clothes and a shower down (and crying). After some calpol and cuddles he picked up and ripped his way through the presents! He has nasty nappy rash but yesterday didn't poo at all and seems better in himself. i'm hoping this is the end of this bad patch, we'll see what the drs say in Jan about the diet as it doesn't seem to be helping this was the worst month since april. we have surgical review and ultra sound on the 14th, paediatrician on the 19th and gastro on the 20th

still got diarrhea

2009-12-20T17:32:00.003Z

well we thought there may have been some improvement with the diarrhea but if the last week is anything to go by there certainly isn't! every morning a leak, 16 lots this week and very mucousy yuk! they took more bloods on friday to see if there is another allergy we are missing which was horrible as he cried a lot and it took 2 attempts as he didn't have much blood. they also did a stool sample of one of the extremely gelatanous ones. his weight for the month seemed to have stabilised but not increased at all, but he was constipated at the time (one extreme or the other) and our scales now make it about another 1/3 kg he has lost as of yesterday. as ever it could be that he has had a bit of a cold, but he has been better for a couple of days now, or it could be the slightly richer food he has had a bit of at the various Christmas events we have done (still dairy etc free though). Consequently he is getting cold very easily and it has been difficult at school drop off as after 5 minutes he just cries from the playground until we are back home again :(

here are some of the fun seasonal photos;

swine flu

2009-11-22T09:41:00.006Z

Josh had his vaccination last monday and needs the second half of the jab 3 weeks later. he had a possible reaction 4 days later but it seems a bit long. he went clammy and cried inconsolably saying ow ow when perfectly happy moments before watching tv, then really tired, with a hard red lump in his arm.
on a different note, we got our latest copy of the GOSH magasine which has the story of a little girl who had the same as Josh diagnosed when she was 11 behind the heart, last year. www.gosh.org/donate/lifeline-magazine/lifeline-editor/?locale=en

effect of new diet

2009-11-11T20:12:00.002Z

well we have been doing the new milk and soya free diet now for just over 2 weeks fully. i'm not sure how long its meant to take but its not solved the problem yet! we have had quite a lot of diarrhea especially last weekend where he ended up sitting in a puddle of it in his car seat which had to be dismantled and washed. we are still waiting on the prescribed formula as the wrong sort was sent through. i hope this will be good as at weigh in today he had lost a kilo putting him behind where he was 3 months ago. his diet is really missing the cheese and yogurt he had so much of.

at least i'm up and about now fully mobile to cope with everything, although the foot does still swell and go red and hot and itchy from time to time, and is not quite the same colour as the other yet!

extra info

2009-11-06T20:35:00.004Z

josh has a prescribed formula from GOS dietician rather then the oat milk suggested locally, however this contains whey and soya and their website says it contains milk and soya, so i'll query that next week !

he also had a bout of sickness/fever/rash over half term. At one point we thought it was perhaps 'hand foot and mouth' but not conclusive in the end. he had a rash down his legs and ulcers all over his tongue, so was off his food. A bit of a shame seeing as we have just started this diet which happens to be lower in fat anyway..
i have started on a beta blocker to hopefully avoid the tachycardia as the previous medicenes have not worked.
Ethans grommits are in situ according to his recent ENT visit and hearing is in the normal range

no dairy or soya/GOS trip

2009-10-25T18:14:00.006Z

we went to GOS for our appointment at long last, and got the results of our capsule endoscopy. Good news in that there was no internal lymphatic malformations, but there were the same enlarged nodes inside the bowel they saw last time and have seen outside the bowel on ultrasound. Lymphonodularhypoplasia! This could be his condition, but they are going to try out whether it is a food allergy, as this would be easier to deal with. so for the next 2 months (or until we go back which last time ended up being 6 months as she gets so booked up) we are going to be strictly dairy and soya free(positive blood result for allergy to these). this is in a lot of places you wouldn't suspect, like all the sliced bread i looked at, and soya in most the dairy alternatives. i'm sure i'll get the hang of it, and that Josh will start to enjoy his oat milk (and that wasn't meant to be goat!). our concerns are getting enough iron and calcium into him, and keeping up the calorie intake, both of which he was getting from cheese and yogurt as he doesn't drink much milk. the hope is the rashes and diarrhea are connected to this. the chocolate could be a ''secondary allergy" caused by having an irritated gut.

She also agreed with the GP who thought it could be like having permanent mesenteric lymphadenitis which is common in children and causes tummy ache etc, but you wouldn't normally have it more than maybe once.

She thinks he needs the swine flu vaccine as this has been found to have a severe effect on patients with bowel troubles, but not the tamiflu if possible as this is irritating to the bowel.

On a more positive note he really enjoyed his 2nd birthday party yesterday, and has some lovely new presents to play with (and Ethan is happy about this too!)

no nuts

2009-10-10T18:33:00.011+01:00

josh is doing better with his nights, a little constipation and a little diarrhea. i had another letter through regarding his allergy test results saying "probably best to avoid all nuts for the time being" due to the peanut result and the production methods. please help me to remember especially over the christmas holidays/when giving presents like chocolate/your child eating peanut butter etc, we don't need another hospital trip!!
my foot is so much better. i am walking around, with the crutches when out and about for back up, but very little of the sharp pain now, just some brusing and muscle aches. i did get quite swollen after a short stroll at Claremont gardens today so am putting my foot up this pm. i also have gotten stuck quite a few times with back ache and unable to stand/walk, most likely due to not weight bearing totally evenly yet. however i might try some driving tomorrow.....

update on us all!

2009-10-02T11:19:00.003+01:00

The blog for Josh does seem to keep being hijacked by the rest of us mainly me!

i am starting to hobble around a bit and the swelling in my foot has gone down a lot, but i can't get a shoe on or drive and its is still painful especially on the foot pad. it seems perhaps the radiologist in Southend had looked at the xray without reading my notes and the pieces he saw were most likely on the outside of the foot. finally we got them to send the originals to the local hospital and they repeated the xray and can see nothing now, they also did a CT scan of my foot and are sure there is no retained glass. The piece local a&e saw is most likely bone from an old injury, it was close to the injury though so confused things further! He also thinks the discolouration is due to perhaps bruising and normal healing and it is not unusual for a bad injury in this location to take 8 weeks. Shame that the dr before i saw gave me anti-biotics that made me very sick for a supposed infection! i am doing lots of physio on the foot and making good progress if a little frustratingly slow.

Ethan is settled at school and a little less tired this week. Tom has a cold and is very busy at work.

we are both tired due to Josh waking in the nights. night before last another full change at midnight as diarrhea up his back etc, 2 nights before that awake from when we went to bed til 2.30am with tummy ache and then just wide awake. He too has a bit of a cold and is off his food, so perhaps its related. G.O.S appointment is in just under 3 weeks now so we can finally chat all this through

diary

2009-09-13T14:20:00.003+01:00

we filled in the patient diary from the paediatrician for Josh and realised that he has had over 250 diarrhea nappy changes so far this year! its interesting to fill in and see the pattern, we knew it was a lot, but still! he also has had a rash every month (except 3), sometimes more since may 2008. useful to collate all the info in the same place.
we have had quite a few broken nights recently with him too, which is unusual, ibuprofen has settled him eventually though
latest on my foot is that i'm still not walking. i had an xray on my foot on wednesday after the gp said she had had communication from southend who had seen glass in the wound after all, but Guildford a&e couldn't find anything, so gave me strong coedine which made me very sick but didn't help with the weight bearing. on friday the wound went red and the out of hours dr sent us to a&e again who did another xray and found a piece of glass this time. appontment tomorrow to decide what to do.....

appointments day

2009-09-08T08:23:00.004+01:00

we started the day visiting the cardiologist, or trying to, after waiting an hour they tracked his secretary down and found out he was ill and it seemed no replacement was on the way, by then i had to leave anyway to get to Josh's paediatrician appointment on time.

it was lovely to see our paed as usual, she has some ideas if he gets the rash and diarrhea again, that can be tesed for, and i have a diary to fill in for his bowels to see if there is any pattern. Josh has had lots of diarrhea the last week+, up to 5 a day, so not his worst and not needing showering down etc, but waking him up at night with tummy pains, so still hard when i'm not up and about and walking!

in the afternoon i was the dr about my foot as i'm still getting pains all over and can't weight bear at all. she looked at the wound and thought there seemed to be fluid collecting which is probably compressing a nerve sop accounting for the pains and pins&needles. more ibuprofen and more elevating the foot but also some ankle exercising. all to hopefully get the fluid moving and me mobile again

update on us all

2009-09-02T21:11:00.005+01:00

a lovely picture to start of my foot which was cut on a broken bottle neck. 2 stitches in the muscle and 11 others with the many steri strips you can see! still not standing after 2 weeks and at least another 1 to go.

Ethan had his grommit operation and it went well, his hearing was in an ok patch anyway but the surgeon said he drained a lot of very thick glue before placing the grommit tube, so well worth doing, particularly just before he starts his 1st year of school, needing full hearing for learning to read and write.

Josh has had an ok summer with still many short episodes of diarrhea and constipation but no long patches of the diarrhea. He seems to be being doing well on it, although does give us the odd bad night, or rash. He has his follow up appointment at GOS on 21st october, but they have contacted us to say they are trying to move it forward, unfortunately we were away the last date they gave us. hopefully then we will get the results and so some ideas.

He has a paediatrician appointment on monday and i have the cardiologist too so i will write again!

doing well

2009-08-04T11:28:00.003+01:00

we enjoyed our first holiday for ages where we didn't go to the local doctor or hospital! The boys loved Thomas the tank engine Land and we enjoyed many free visits to the numerous National Trust properties nearby including a working farm and interactive museum of childhood. We had one bad day of diarrhea and he has the odd episode but the last month he has been constipated more often than not, which does bring its own issues with it like discomfort, but the positive outcoome is that being able to absorb properly has allowed him to put on weight; up to 11kilo and 25th centile nearly, and even more excitingly he has been growing and is now 75th centile, so will be tall like his brother after all!!

pillcam

2009-07-11T10:11:00.002+01:00

the pillcam has returned and we have a chance to look at it, and its not much bigger than a large tablet!

we also had a routine audiology appointment yesterday for the boys hearing tests (results same as usual) and there was a new man doing the test and even he knew Josh's history, he said when there are unusual cases they share the stories with each other so they can learn from it

home again

2009-07-09T20:35:00.007+01:00

we got back about 7.30pm last night and are tired out, josh mostly from the sedative effects and me from another night in the 'dentist' chair (see Feb post).

no real news, they now need to download the images and review them.

it was a couple of days of waiting, asking questions, and a little bit of worry.

On tuesday we travelled up on the train with Grandad, Josh was limited to jellies and juice from breakfast onwards again and nothing after 10pm, but he didn't really mind. they put in a canula and took bloods for some tests and then he just played until bedtime which he decided would be at 5.30 as he had missed his nap, but he managed to sleep through all the light and noises til 6.30 am when he was woken for his sedative. at 9am he was given a further sedative and taken to have the capsule placed, which involved a chest full of electrodes attatched to a device which recorded the images taken every 4 seconds. he was a little tachycardic during the procedure (probably bit stressed) and needed some oxygen (apparantly can happen with sedatives). he was extremely drowsy when he came back to the ward at 9.30 and infact got me a bit worried and had to be shaken awake at 3.30, but he always does like his sleep!

the technology was amazing; such a small capsule really which takes hundreds of pictures throughout the bowel and sends them remotely to the device conected to the electrodes and then to check progress the dr comes and plugs her laptop in and a crystal clear image appears. wow

the dr doing the endoscopy again remembered us (or Josh's case) which was nice in a way and the nurse said they didn't do it that often.

at 3.30pm on her 3rd check the capsule had reached the large intestine and so the device was removed and the elctrodes (OUCH!) and we were free to go at 5pm.

After a stressful rush hour journey home we are now busy as ever, Josh is fine and we are waiting for the capsule to arrive back!

up to GOS again

2009-07-06T13:25:00.005+01:00

since the last post josh has had diarrhea the same every day except for the constipation and tummy ache few days. of course now we are going into hospital things have settled down, lets just hope they can see what the problem is.

the rash was not chicken pox, just another 'viral' thing or something.
a few days after that finished we had another rash more like a heat rash but not, that worked its way through his body over the course of a week, the Gp has written to the paed to see whether there is any connection, seeing as he gets it so often. as of yesterday he has a rash in his hair and down his neck and ears and back

we collected another sample as the stool sample of a monthor so ago was too old after it had sat waiting all weekend (!)
up to GOS tomorrow for his capsule endoscopy, not sure exactly what to expect although after a few phone calls we know not to feed him after breakfast and how they place it etc
not sure there will be any results for ages as they have to review the data from the recording device first so we won't get any whilst we are there and the scheduled appointment is for october , but they say they will contact us with any interesting findings...

josh had put on some catch up weight but has lost a lot of it with the recent diarrhea

just to give you an idea...

2009-06-18T19:06:00.008+01:00

a post not for the weak of stomach!
josh as i said is having a bad bowel week. we are wondering if it is fat in his diet, but he now has a chicken pox esk rash, however we have had that before and it was just a skin reaction to the diarrhea. if it is the pox i'll know in the morning and then we'll be back to not sure if it was the illness causing the upset stomach as we have had before.

definately not chicken pox, a reaction to the diarrhea. this is todays offering

16th June

2009-06-16T14:13:00.004+01:00

quick update;
the phone call from the local surgery was a waste of time as when he called he said that he could see there was a note from the receptionist but no note as to why he requested the appointment, so he had no idea!
Ethans blood tests were a drama(he hates plasters) with lots of screaming! but they came back normal.
Josh's bowels are over active again, but his appetite seems ok and weight holding its own. possibly a high fat diet connection?

update

2009-06-05T21:01:00.009+01:00

sorry its been a while, it seemed i had no main material for a post, just lots of bitty bits

we saw our paed dr who was nice to touch base with (although 4 days before had we got a letter cancelling the appointment and rescheduling for september, turned out to be a clerical type error and we were slotted back in but annoying all the same). she agreed with charlotte's eye diagnosis and said that we should have been directed to sutton eye hospital and that it was a brave decision to send us home they normally do IV antibiotics to be safe. She also said we should just go ahead and do the allergy tests at epsom as although GOS wanted to do them they hadn't. 1hour later the bloods were taken!

the double course of antibiotics had the inevitable effect on Josh's bowels having us get him up and change him and his bed every night, but perhaps the probiotic effect was noticable as we were expecting worse (not to say it wasn't bad, he did end up with a antifungal steroid nappy cream) the eye got better dramatically and quickly

Ethan has been to ENT and is booked in for more grommits on Aug 7th, his hearing is abominable at the moment! he has also started 'summer school' a 12 week program of school introduction ready for september.

apart from producing the stool sample GOS wanted at the start of half term which Tom rushed to Epsom for them to send (!) we had quite 'well' half term. still lots of diarrhea with no pattern i can see, but no prolonged patches, eating well and putting on weight

Drs surgery want to talk re a letter from GOS, can't say what about though. never done that before so we are left wondering until 12th June

we received a letter from GOS one saturday saying Josh was on the waiting list for an admission, seeing as we wern't excpecting anything this left us slightly concerned all weekend. turns out they are going to do a video capsule endoscopy (July 7th) to see the whole of the small bowel. i didn't realise fully last time they didn't see what i feel is the key part - where the original problems were.

we got the allergy results back; slight allergy to milk and soya and a peanut allergy. eggs, fish, lamb, wheat fine. may try a milk free diet after the endoscopy 2.

i'm trying a new heart medicene Ivabradine to see if it is more effective, and have set up a mum's support group

Ethan has blood tests next week to check there is no underlying cause for his permanently enlarged tonsils

i think thats about it! i will update on the different bits when i have more info

swollen eye

2009-05-09T14:50:00.004+01:00

poor Josh, one thing after another. he woke up this morning with his eye swollen shut (it did look a bit smaller yesterday than the other one). we went to epsom who dyed his eye to check the cornea and have given eye drops to treat for blepharitis. they don't think it would be related to the fall off his trike although it is the same eye (which was our initial worry) if it doesn't settle they will try oral antibiotics too.

having had Charlotte (paed opthalmologist) over for her expert opinion we returned to epsom as she said it was periorbital cellulitis and needed oral antibiotics promptly incase of complications. they agreed (!) and have started him on 2 sorts of antibiotics and the swelling has started to go down. diarrhea is the next problem we'll encounter but the eye was more important. Thankyou Charlotte!

http://www.childrenshospital.org/az/Site1387/mainpageS1387P0.html

holidays

2009-05-04T19:31:00.002+01:00

josh still has diarrhea following the swollen tummy thing. eating is reduced too. of course it is a bank holiday weekend so we could have predicted it, we have calculated he has been ill every holiday for nearly a year;
vomiting episdoes all of last summer
surgery recovery october half term
poor eating, diarrhea, weight loss over Christmas
diarrhea whilst we were away february half term
prolonged effects of the sickness bug and rashy over Easter...........

update 6/5 at weigh in he has lost some weight but not too much, so i'm sure he can put it back on when we're in the next good patch

tummy

2009-04-30T21:49:00.004+01:00

poor Josh. he seems like he might be getting a cold, his nose is slightly runny, but he has quite a high temerature (39). this as over christmas/new year seems to have effected his tummy, loosening his stools, and giving him wind and tummy ache. he looks like i did when pregnant with a big firm ball like tummy and an 'outy' tummy button.

Gastro-enterology follow up

2009-04-23T12:26:00.002+01:00

sorry for the dealy in posting i came down with another sickness bug yesterday!

no firm answers from the doctor but the route she is going down is the allergy one for now. he has swollen abdominal nodes (which she says may be from his condition), some reflux, the diarrhea, and raised IgE levels in his bloods, which all indicate some sort of allergic response. she is going to review the biopsies taken during the scopies in her team meeting and get back to us regarding further testing as to what the allergy is.

For now he is on a reflux medicene and she has given him some concentrated probiotics to try to settle his bowel. They may then change the sort of milk he is on when the rest of the testing is done.

When he is next having diarrhea she wants a repeat sample as she feels it may contain sugars as it is causing such a rash, but i'm not clear what she meant by this.

she also wants to retest his bloods at some point as fibrinogen (a clotting agent) was reduced in function, but is in no hurry as he has after all been fine during surgery.

bump

2009-04-19T22:30:00.002+01:00

uh oh. just to keep things interesting (and so he can go and visit the nurses i think!) Josh fell off his trike yesterday. a bit of a nasty bump but steri-strips have fixed it

sick again

2009-04-04T21:26:00.004+01:00

containing the mess!

Josh has a possible gastric bug at the moment. when he woke up he had been sick and had diarrhea in the night (covered head to toe). He was sick on and off throughout the day and had a lot of diarrhea. Managing him at home for the moment

10/4 he still has diarrhea and is off his food a bit, has lost some weight which hopefully is mostly fluid as after the previous weight gain he is now at less than 2 months ago. definately a bug though as Tom and i have had it a few days after Josh and Ethan caught it last night..........

we have seen the dr due to an angry rash on josh's tummy and back and she felt it was probably folliculitis (infected hair follicles) due to the spread of bacteria with his chronic diarrhea

no appointment on tues

2009-03-14T15:15:00.003Z

incase you were checking the blog to see how we got on on tuesday, we are not going! i got a call last week which i tried to return, but as they didn't leave a number both gastro places at GOSH said to they would call back if it was important. i got another call thursday and tried to call the number they left every 2 hours for 2 days, and left a message but never got through. Outpatients said they didn't know what it was.
out come was that they had moved the appointment to thursday and so we missed it. they are trying to arrange a telephone appointment, or over book a clinic, but it could mean that we are waiting until the end of may!
Grrr...

ultra sound

2009-03-05T21:29:00.005Z

Today went well. 'Grandma' and I took Josh up for his ultra sound and surgical follow up. On the scan they could see nothing!!! from such a large mass each time before this was a shock. The follow up with the surgical team confirmed that they did leave some of the mass there as they had said but this would not be visible on ultra sound. The only finding was a thicker mesentery, perhaps scar tissue (which apparantly may be of interest to the gastro lot). They plan to review him again in a year and will leave him with Gastro to diagnose until then. i guess there will be reviews for awhile as there is the chance this mass could regrow, but we feel there is some sort of remission as it were. so nice to have a positive appointment.

in himself he is doing well. After the IV fluids he really seems to have filled out, he is eating well too and has regained the 9th centile, putting on a kilo in 10 days! He is now constipated (for a change!) and has been up crying with tummy ache this evening

on a different note those of you in the loop will know i have been having palpatations, and after a couple of ECG's they have decided that it is a sinus node disorder that is causing an irregular beat and a condition called postural orthostatic tachycardia (raised heart rate with change of position). this is not worrying in anyway he said but the heart does not beat very efficiently so most likely accounting for the fatigue i'm feeling. i have an anti-arrythmic medicene to try.

tests week

2009-02-27T22:13:00.004Z

so we are back from our tests week, no real results as we will get these on 17th March. its was a busy and tiring week and despite some smiles Josh was tired from the sedative and the stress.

Josh's bowels settled down just in time for our trip up to GOSH and he started to eat again. He looked a bit odd as he was quite slight but with a distended tummy.

We arrived Tuesday morning kindly escorted to London by my Dad and after a short wait Josh was given his laxative for bowel prep and a canula put in to take bloods and give fluids over night. We then spent the day waiting around for the meds to take effect, chatting to other Mum's and playing with other kds of all ages. Josh was on good form charming the nurses with his smiles and barely seemed to notice he wasn't allowed to eat all day. Being at GOSH has the effect of making it seem like Josh has no problems at all by the time you have seen the variety of conditions the children around the hospital have.
The over night stay was unsettled due to the noise of sharing a ward, other kids crying, TV's on til midnight, being woken by the IV fluid drip machine, Josh waking up, trying to sleep in the chair bed alternated with sharing Josh's cot!
The next day Tom came up and Josh had his sedative at around 8am and quickly got cranky followed by sleepy until 10am when he went in for his endoscopy and gastroscopy. Contrary to the leaflet we were not allowed to stay in with him and waited the 45mins before he came back round. After a bit of crying he then slept of the sedative for most of the day on and off and still managed to sleep through the night!

We are really waiting a couple of weeks for results but there was nothing to be seen from the upper scope as they would expect for his age apparantly, the results of the biopsy are more important here. The lower scopy again did not show some of the things they were checking for but did show all his lymph nodes in his abdomen were swollen which was also the case in September and October. The consultant will review the bloods, scopies, scans, history biopsies etc and tell us what she thinks on the 17th.
That night Josh and i stayed at Tom's Aunt's and i enjoyed having a proper bed and a nice meal, glas of wine and a chat, Tom went home.

We were back at GOSH the following morning for 9am for the probe to be placed. Josh really got upset with this compared to the previous times (through the nose) and it seemed to me to be hard to put in and they tried both nostrils before going back to the 1st one. They then had to x-ray top check the placement and readjust. Unfortunately around this time i realised it would have been better for Tom to be here for these tests than the previous day, but too late now! i had all the bags to carry and Josh to watch so he didn't pull his tube out and no ward to be on and couldn't check in to the patient hotel where we were staying until 3pm. We went for a walk to the children's park at the end of the road, and then back to the playroom where 2 hours after it was put in he pulled it half out! the nice staff in the playroom kindly kept all the bags for me while i rushed him back to the ward before it all came out and had to be re x-rayed. Luckily despite screaming, coughing and retching it went back in.
The rest of the day was spent watching him like a hawk whatever we were doing, even going to the bathroom! It was a bit lonely in the patient hotel room, but very nice facilities a bit like a travel lodge, and there was a communal lounge/diner/kitchen.

After very little sleep (watching the probe) we went back and had it removed and then Tom came and collected me from his Aunt's again....phew!

Josh is eating well after his 'detox' type day! and is happy and smiling again and fully recovered from any sedative, nappies all ok!

Ethan was a good boy whilst we were away and seems to cope well with it all. His hearing is pretty bad at the moment, but he is due to see the ears dr week after next. We also got the news this morning he got into our 1st choice school.

Next;
scan and surgical follow up next thursday.
gastro consultant on the 17th

sussex

2009-02-22T14:16:00.003Z

we are now back from our break in sussex over half-term. it was a nice break, change of scene and pace. Thank you Jo and Mike for the use of the cottage. We had some nice days out; on a chilly beach, Arundle, Chichester, a little village, Fort Nelson, Hayling Island, and of course what holiday of ours would be complete without a visit to the doctors?
Josh's bowels were even more active than normal during the week starting the friday before we went when he had a chilly change on a bench at Wisley, increasing steadily til wednesday when he had 10 lots of diarrhea, needing a full change and shower down each time. we visited the doctor who checked him for dehydration (he was very floppy and not holding his head up) and gave us some anti-fungal hydrocortizone cream for his nappy rash. so most of our outings were punctuated by changes on the parcel shelf of the car and then trying to warm him up again (including in the middle of the night), the worst incident being an accident on our hosts carpet. He ate poorly til today when he has started to eat again and the nappies are fewer, his weight is around 8.8k which is around the 2nd centile.
we visited the local hospital on the way home who again checked him over but declined the carefully collected stool sample as they thought it was most likely a viral thing......@**%#@*!!
we are feeling frustrated and fed up with the regime and the constant fighting on his behalf but hopeful that the tests next week will shed some light on the matter. Amaazingly after the nappy is over, Josh still manages to keep smiling.

next GOSH appointment

2009-02-09T20:07:00.002Z

I spoke to the receptionist today and she has booked Josh in for his tests the Gastro Dr suggested between the 24th-27th Feb.

I will get the confirmation letter through soon but the plan I think is for a bowel 'prep' day on the tuesday, stay in overnight and then have the 'scopies' done on weds. Then we will come back in (after staying in London) on the thursday for an impedence study which is some sort of 24hr probe to test reflux and other things, having it removed friday before coming home. More tests and a longer stay than we were expecting which has come as a bit of a shock, but happy to be making headway at finding out what is going on.

Generally Josh is 'well'. He was sick once last Wednesday which is most likely the same bug Ethan had. His bowels are still loose and his weight still low, but he is now eating well

25th jan - ill

2009-01-26T18:50:00.007Z

Josh had a high temperature since Thursday 39-40*, we saw the GP on friday who referred us on to Epsom hospital who kept us in for observation and then we went home. He spiked fevers all weekend with cold phases in between and we returned to Epsom on Sunday and were kept in overnight for more observation after a stubborn temperature of 40.3 or more (that was as high as the thermometer went). Because there was no apparant cause for the tempereatures they did a few blood tests to check for infection etc and they were all fine. We are home again now, and Josh is happy as usual, a little wan and pale but cool enough, and diarrhea again. weight rather static unsuprisingly

Gastroenterology

2009-01-14T21:59:00.003Z

Another long day as our 2.30 appointment was delayed until 4pm, and we didn't get back 'til 8pm!
It was a very good appointment though, lovely to see a specialist of the gastrics, and she was very thorough. She for now has taken a full history and is doing tests and we go back in 2 months. So no answers really for now.
She tooks bloods (at 6pm so he cried and cried as he was already tired), a stool sample and has booked him in for a endoscopy and colonoscopy (at a date before the next appt). She was testing for so many things its hard to remember what she said but here goes; general nutrition such as iron levels and vitamins, kidney and liver function, allergic response, immune response, lactose, gluten allergies, protein absorption, other malabsorption. The '-scopies' will see what the lining of the gut is like and if it is irritated and if the lymphatic malformation is effecting that.
She agreed that there could be some issue with the LM being on the blood supply to the bowel causing spasm/malabsorption. She suggested waiting for his next immunisations until the test results are back, just to be sure.
I think thats everything and that i've remembered it all correctly. The only downside is that as he is doing better now he is over his many viruses and the diarrhea seems to have stopped, the stool sample may not show what they are looking for if it is an intermittant thing.

13th January

2009-01-14T08:31:00.004Z

i can't believe its nearly a year ago we were first in hospital.
Yesterday we saw the paediatrician and as ever it was nice to feel someone was looking out for him. She mainly, now we have so many others involved, coordinates things, but yesterday squeezed us in with the dietician as he is still losing weight, under 9kg (should probably go back in the baby carseat really...). The dietician told us a lot of what we knew already about adding calories but also a few ideas of how to stop his fussiness over food, ressurance that being firm is ok, and some back up nutritional products we could use. Today we go to see the Gastroenterology department at GOSH, so more later or tomorrow

Meeting Dr Waner

2009-01-10T11:23:00.005Z

We survived the 4hrs each way driving plus stops trip to Liverpool yesterday, thanks for driving Mum and Dad, especially in the freezing fog on the way back in the dark! Then we all coped well with waiting 2 1/4 hrs for the Dr who was late. He basically confirmed a lot of what we had thought already and put us in touch with a Dr in Boston (we've been trying to do this) who has vast experience of lymphangiomas in this particular area. He did however find it hard to be definate without current MRI images. In a nutshell he felt having left a large portion of the original mass behind (to preserve bowel function) it is quite likely to recurr at some stage and cause problems of some degree. When symptomatic the plan we should follow in his opinion was; to take Josh to Epsom for review and to rule out tummy bugs, do an ultra sound, refer to GOSH if needed and start oral steroids as this reduces lymph flow. Then more surgery if it does not resolve. He commented that it was an extensive mass and showed his colleague. Some viruses are likely to cause swelling in the mass. It will most likely stay the same size in relation to Josh, i.e. he will not out grow it.
We had high expectations of the meeting so as expected we do feel some sense of anti climax that not all our questions were answered, but also reassurance that the right course of treatment has been followed, it is not anymore serious than we knew already, and we have some new avenues to explore, and 'official' information to discuss in our upcoming Gastroenterology appt rather than "i read on the internet...". All in all a good use of a day, if a little exhausting!

On a different note Josh is mostly over his various viruses and his eating is picking up and his tummy settling down, hopefully this will result in a good weight gain as he is now under the 5th centile.

4th Jan

2009-01-04T16:38:00.003Z

Josh is slowly getting better we think but no improvement on the eating or diarrhea as yet and therefore no improvement on the weight either. We had a lovely Christmas though. Will post when we have news from our appointments

The new year

2008-12-23T19:38:00.007Z

As some of you know already we have a very busy January coming up with lots of doctors visits.

I have a cardio Dr appt on the 5th Jan and a blood pressure monitor on the 8th due to a rapid pulse SVT apparantly, nothing to panic about but does make me feel exhausted doing very little!

Josh is lucky enough to have been given a slot to see a visiting Dr from New York on the 9th, who by all accounts is the expert on lymphatic malformations (as well as haemangiomas). We do have to travel to Alderhey to see him, but we feel that it will be worth it, and is a great opportunity.

On the 14th we have our gastroenterology referal as i think i mentioned in the last post, but we are more and more interested in their thoughts, as to why he seems to get diarrhea when he is ill.

At the moment Josh is sufferng from a cough left oer from a cold with temperature spikes. this as been putting him off his food for the past 3 weeks or so and this combined with the diarrhea has resulted in quite significant weight loss, the most since he was initially diagnosed and thats including during the problems of the summer and post surgery.

So all this along with a few other appointments is creating a very busy January!

Merry Christmas

December 3rd

2008-12-03T10:28:00.003Z

We have our gastro appointment through for January (ultra sound and surgical follow up is February). His bowel is still quite unsettled at times so it will be interesting what a specialist of this area thinks (so far we have seen an oncologist to treat the growth).
He is doing well in himself, despite a cold and is now walking very fast and confidently (although very wobbly!) round the place

surgical follow up appointment

2008-11-20T20:19:00.003Z

i went up to GOSH today for our follow up appt, kindly accompanied by my Dad.
Josh is recovering well. we saw the registrar who has organised a follow up appt in 3 months to review his symptoms and perform an ultrasound. we are really pleased about this, i hated the thought it could go unchecked. the pathology results seemed to show it is lymphatic tissue but they are rather written in another language! the surgeon felt that his current diahorrea and sometimes constipation are not related to surgery and so will refer him to gastro also. All in all a good appointment

Happy Birthday!

2008-11-01T12:03:00.004Z

We enjoyed a lovely day, going to church in the morning and a party with family in the afternoon. Josh really enjoyed being the centre of attention and all the new toys!

results

2008-10-24T19:43:00.005+01:00

the biopsy results were as they expected - a lymphatic malformation. this was what we were expecting but such a relief to hear. He is going to refer us on to the gastroenterology department as he feels at this stage it is more in their domain, but obviously if needed we could be referred back again. it will be Epsom Hospital that will be doing day to day care.
The operation was uneventful as far as he was aware, a little lymph fluid was loose in the abdomen, but the lymph nodes looked ok, and he said they removed all of the 'lump' part which was about 50% of the total.
Our follow up appt with the surgeon is scheduled for the 20th Nov. On a more exciting note josh took his first steps today - 2 staggers towards falling on to Tom! just before his first birthday and only a week after major surgery, we are very proud!!

no news...

2008-10-23T20:09:00.004+01:00

nothing to add really. making good progress, no pain, quite active. temperature only a little raised. eating averagely. still got the runs! didn't hear from the dr today hopefully will tomorrow re: biopsy results. he said he would otherwise he's going away next week.
don't worry if you don't get frequent updates now, we will just write when there's news.

we are home

2008-10-22T13:06:00.004+01:00

sorry not to have updated the blog for a bit, discharge happened a bit promptly. Josh recovered well and very quickly from his operation all things considered. He started back on milk and some very soft solids, his bowels are working well if a little over actively! He came off his morphine and has only needed occasional paracetamol - what a brave boy! he then came off his drip and cathetar on monday.

until monday josh remained floppy and unable to support his head and cried when sat upright. the surgeon visited sunday morning and suggested starting on milk. his first water and milk prescipitated more bouts of crying but this slowly improved. by monday he started to be more of his usual self but easily tired. he had his first food and tolerated this well, the registrar who had been in the operation assisting came back on shift and said to see how he copes with food over that day or 2 and then go home. we agreed with the ward sister that if all continued to be well we would go home tuesday morning and the registrar said that would be appropriate.
Granny and Grandad brought Ethan up for his first visit monday lunch time, and after letting me know his feeling on being left was smiley and happy and enjoyed exploring the hospital eating cake and playing with toys!
it was decided that Josh was doing well so could return home that day. after organising this and going back via Tom's Aunt's to collect our things we arrived home at 11.30pm!
He had a settled night. the communtiy nurse visited the next day (at our request) and checked him over. he later developed at temperature thats kept creeping up (38.1) so she suggested going in to Epsom Hospital where they gave him a thorough check and took a urine and stool sample and said he was ok to go home as by then his temp had dropped to 36.5 but to come back if we were worried. over night his temperature continued to fluctuate and was 35.7 when we to bed as he had sweated to much. currently we are keeping an eye on this and are to go back if it continues to up and down.
in himself he is gaining energy all the time and laughing and amazingly off all pain relief!

19th October

2008-10-19T22:28:00.008+01:00

Josh had a full night’s sleep. The rest is needed and the fact that he managed this shows the morphine is helping keep the post operative pain at bay. NG tube is now out as it is no longer needed and he is taking sips of water. Josh is still being given boosts of morphine when necessary. The post operative wound looks amazing. Whilst infection is still something to watch out for, the line across his tummy looks less red/angry and in places is turning to a pale pink hue.

Pm to 8pm:

Some hurdles cleared: no temperature and no infection thus far. He is off the morphine drip and has had only one morphine "boost" through the day. This was following having some water which made him feel very uncomfortable. His pain is being managed with regular paracetemol and "boosts" if necessary. He has drunk more water today and also managed 2 goes at milk. 100ml at lunch and then 200ml at 7pm. His first post op. dirty nappy was yuk but proved the bowel was working with what it had been given. Solids like yoghurt are for tomorrow. The last remaining tubes are his catheter and the canula which is the access port for his morphine boosts. The catheter may last longest but the canula may come out tomorrow.

Amazingly (and for us worryingly) there is talk of being discharged in the next couple of days. Great that the professionals think he is doing so well. Scary that when at home all the responsibility for his recovery and recuperation will be down to us with no access to instant strong pain relief or bleeping machines to monitor stuff, or access to the lovely/ kind/ knowledgeable and reassuring nurses who have so much experience in post operative care. Anyhow, that is not yet and we'll cross those bridges as we get there. For the moment Josh has had a mostly comfortable and quiet day. Mobile enough now for cuddles and that was today's highlight.

18th October

2008-10-19T07:03:00.009+01:00

During the night Josh had a temperature spike. His urine passed was low and his blood pressure was noted as being low. Hourly observations meant Ruth and Josh whilst being comfortable all things considered were interrpupted hourly through the night. Josh managed to pull his NG tube out twice and finally he managed to remove it completely until it was put down a final time and lots of tape applied!

During the night the epidural pain relief stopped working so he was started on a morphine drip and regular paracetemol. He needed a few morphine boosts through the night to remain comfortable and a few again through the day.

He was settled throught the day, asleep and drowsy. Woke up a bit for short periods and showed us his smile.

In the evening he was allowed to have his first few sips of water. He was eager for this but it did leave him unsettled and uncomfortable for a while afterward. The presence of a wardrobe sized light and sensory machine with metres of fibre optic wires and bubbles was a welcome distraction.

Next steps are to remain stable, temperature and infection free, gradually off pain-relief, drinking and eating, pooing and weeing. Once they are happy there are not issues we will be discharged.
In conclusion for today we are all pleased with how well he is doing considering and he is getting some of his smile back.

Operation Day 17th October

2008-10-17T22:31:00.005+01:00

Ruth had a restless night in GOS, mainly due to no curtains and a tower spotlight shining directly down into the room. The nurses were very helpful and together sheets were hung to reduce the light coming into the cubicle room. Ruth and Josh were awake at 5.30am to give Josh last feed before nil by mouth period started.

Anaesthetist arrived 8.15am and the pain relief options for the op discussed. The recommendation was for an epidural as it required less morphine but with greater effect as it is going straight to the pain centre. The surgery was sheduled for pm session.

To our surprise the surgeons turned up at 10.15am as we were tidying the playroom and told us they were ready to take Josh down to theatre. Bizarre to go through the serious risks of bowel surgery with Josh playing with cars at our feet. The mass had been assessed to be "very large". The risks remained the same as stated previously with possible long term problems with adhesions.

We went down to theatre at 10.15am and Josh was put to sleep with gas. An hour later 2 nurses came to collect Josh's bed but we panicked as they were followed into the room by the surgeons. They surprised us by coming up to ask for consent to take pictures of Josh's mass.

Whilst Josh was in theatre we wandered the hospital corridors. We were then called at 1.15pm to collect Josh who was out of theatre and coming out of anaesthetic. He seemed okay, a bit queasy and very happy to see his teddy to cuddle. We and the nurses have spent the afternoon monitoring him.

During the operation the surgeons removed a 10cm length of bowel which was most affected by the lymphagioma. The surgeons thought the lymphatic mass was causing the passage to be nearly closed. They did not attempt to removed anything more of the mass as it is bedded closely around the bowel and you cannot remove all the bowel. However, the surgeons were hopeful that what they had removed was the source of the recurring stomach problems. Biopsy reports should be back 5-10 days' time. Our oncologist will be able to give us more info on this then. Time, we are told, will give us a better picture of whether anything more will need to be done.

And so to the immediate concerns. The epidural and paracetemol has been enough to manage the pain and post-op temperature so far. After 2 hours, he passed no urine so he was given an IV liquid bolus to encourage this along with regular IV fluids. 2nd bolus given at 8.15pm. When upset his pulse has peaked at 190 and he has become shaky. Quite out of things and very drowsy. This is fine and actually quite good in terms of his recovery. The less he moves the fewer the occasions to twist wires/ tubes and pull them out. Mini-alarms constantly going off as he moves and the monitors lose their sensor readings. These rouse Josh and remind him he's supposed to be upset. Blood pressure a bit low but ok.

The next hurdles are gradually coming off the morphine and painkillers and then over the weekend re-introducing food. We will update with more soon but we are very pleased to have him back after the worry of an operation. GOS staff cannot do enough to help / support/ answer questions. They all make such a difference.