progress......?

Since Christmas we have been trying to solve the ongoing salmonella Josh keeps testing positive for. The last gastro dr we saw at GOS ordered some new stool tests plus a regular screening for bacteria etc. This was done on dec 19th but results were delayed until 31st dec, saying Josh was positive for salmonella.(see previous post) He stayed off preschool whilst they retested (and also tested Aaron and Ethan) and returned after 2 days when it came back negative. They started the original tests again but they then came back positive for salmonella again! So although it was felt he would not be very contagious, he was off preschool whilst they decided what to do. He then tested positive again (totalling a month although he seemed well apart from the usual diarrhea) and his drs convened and decided to start him on some strong antibiotcs (ciprofloxacin) for 2 weeks high dose. There was a list of some worrying side effects (hence not used in children lightly) but fortunately he suffered none of these. In total he had 3 weeks off preschool plus half term he missed it quite a bit but seemed to benefit from the rest at home. Unfortunately all 3 boys got a regular sickness bug during this time too (we tested to be sure!) so a LOT of washing :(

Interestingly whilst on the antibiotics he had no diarrhea at all but when he stopped them it came back full force. We saw a local gastro dr about testing for sugars malabsorbtion which his stool results suggested and she thought his bowel (due to his malformation, surgeries, etc) is not flushing bacteria out properly, found out by the salmonella saga, but involving other bacterias resulting in 'small bowel bacteria overgrowth'. There would be more testing to confirm this and we have yet to talk to his GOS gastroenterologist but the trouble is now not just treating it but working out how to solve the underlying problem so its not recurring all the time. We also need to test another sample next week.

swollen tummy

more info: http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/article.htm

Christmas 2011

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

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

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

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

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

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

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!

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

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

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

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

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

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

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

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.....