Bit of an all sorts update

Mikenzee has had a good day today, we had to drops stuff of at the hospital and pick some stuff up, and then we went shopping for a new book shelf for her, Mikenzee has so many lovely books and im sick of having them sat in massive containers so have decided in the new house we will have a lovely big book shelf in the living room, we dont get it for another few weeks believe it or not Mikenzee is as excited about it as I am, and keeps telling me its just for books not for DVDs only story books, I love my little book work.






Mikenzee has not gone back to school yet I was hoping to send her today but after her still not being good yesterday we gave her another day off so with a bit of luck she will go back on friday.






Post operative wise Mikenzee is going really well, she is a lot more comfy now she has a drain in to her bowel she doesn't seem to be getting as sore which is fantastic, the site is doesn't look to good but its not bothering her so that's definitely a good thing.






What seems to still be causing problems is the Clostridium difficile that she got about a month ago now when she showed the first signs of the leak in her jejunum, she was put on antibiotics which caused C diff in her large bowel, anyway she had treatment for this while she was in hospital for her surgery and then we carried it on once we got home until her IV tissued then it was decided between the Dr and microbiology that we would stop the treatment and hope for the best as appose to trying to get a new drip into her, I was happy with this plan as its not an easy task to get a drip into Mikenzee. She had started to show improvement of her stools while on the IV antibiotics so we felt that there was a good chance we had rid the infection, unfortunately a few days after stopping them she seemed to get a re laps or the runs not as bad as it was initially but bad enough to effect her hydration, being how bad she got the last time she had this I got concerned so I spoke to the nurses and they advised us to put Mikenzee on her home clear fluids plan for 24 hours and see if that settles her bowel down, a couple of hours after putting her on the clear fluids she started to slow down with the stools, which helped with her hydration but unfortunately didn't help with her blood sugars so we had to put her back on her feeds causing her bowels to over work again, so I switched her back to clear fluids, which worked fine for a while and then her sugars dropped again, meaning i had to add her feeds to the clear fluids, at this point I decided I would take her into be checked by the Dr as i felt i had been chasing my tail for the last 24 hours and did not know if we was going to win or not so i figured take her in and let them decide.




She started to pick up again on the way to the ED she had a rebound high blood sugar which seemed to give her a bit of a energy burst, she she laughed and joked around in the car for a bit, once we got in there and I took her out of the car I was pleased to see she had gone the opposite way to what I was concerned about and actually had improved and not followed her pattern from the previous week, so she was laughing and joking around with the ED nurses which a few of them commented on how lovely it was to see Mikenzee awake and interacting as they generally never get to see that side of her in the ED ( for obvious reasons). Regardless of the fact she was doing so much better her pead Dr K came down to see us in the Ed, we spoke about the clear fluid mix and how its just not working, they was concerned it was going to make her bowels worse and effect her sugars negatively anyway so have decided that we stick to the plan of either Vivonex and glucolect or IV fluids that is it no more trying clear fluid mixes as they just do not work consistently and we need them to. They also gave us a form and sample pots so we could send of another sample to see if she has still has the C diff infection or if its getting better or has come back.




After getting home I had a look at the clear fluid mix that we use for Mikenzee and realised that the bulk of the glucose powder settles to the bottom of the bottle, seen as we hang mikenzees for 4 hours at a time it seems what has been happening is that she gets the bulk of the glucose over the first hour and then very little over the next 3 hours which would explain why she gets a high when we first start running it and then by hour 4 her blood sugar level is very low, I actually did an little experiment into a container in the sink and found that what I had suspected was correct, so we now know why we have not been able to keep her sugars stable for any period of time on her clear fluid mix.




For any one that is interested the clear fluid mix that was was attempting to use was

1 litre or glucolect
83 grams of dextrose powder ( added to the glucose in the glucolect makes it up to 10 percent)
2 grams of iodised saxa salt
5 grams of diet rite salt


Im so disappointed that it did not work as in theory it should work great its the amount of glucose she needs and has the right balance of sodium and potassium to help with absorption so ideally it should of worked, the dietician is going to speak to the pead about the possibility of trying another clear fluid mixture using a different type of dextrose that is more soluble and wont settle at the bottom or the bag but I have said can we perhaps try that in the hospital next time she is in rather than trying and failing at home again.




Today we had a call from the pead registrar to make sure we had dropped of the stool sample for the C diff toxin test, I told him she seems to be getting better she has improved even more today so I am hoping that the test is negative for the toxins, He said if its just the C diff and no toxins as she is improving in her symptoms we will assume that the continued bouts of the runs is just her body riding the last of the infection but if there is toxins in there then she will have to restart the treatment. Obviously I am hoping she will not need to re start the treatment but I guess will have to see what the lab results show.




Either way I think Miknezee is over the worst of it, as she seems better in her self, today is the best day she has had in weeks so I am hoping this is a good sign of what is to come.

Awesome day out

Today Mikenzees Daddy and I took her to the Mollys farm or the petting zoo as Mikenzee calls it, we had a great time Mikenzees favourite is still the Llarma, and she was spent ages making her Dad feed it.


Today for the first time there she actually touched one of the animals they put the rabbit on her lap and she lasted about 5 seconds before freaking out which for her is pretty good.  There was a billy goat running around free that she was also pretty fond of, it was really cute. Mikenzee was NOT so impressed when they let the pig roam free she did not like that one little bit. 


All in all it was a great day:) cant wait to take her back again :). 

Monkey is home and been out and about

Well I brought Mikenzee home last night, and was happy to put her in her own bed, she didnt realise till she woke up that she was home.  Mikenzee is still on IV antibiotics as she has an infection in her bowel C diff so is on that for the next 5 days, but thank fully i can do that at home. 


Mikenzee is starting to get really sore i think as its all healing on the scar and getting used to the new drain, She is draining a decent amount into the bag which is ok as that is what its for but it makes me shudder to think how much was draining into her abdomen.  


Anyway we had a nice trip to the shops today and got Mikenzee some pink girl lego her new favourite thing to play with, then we just came home so she could relax, as the night has gone on her belly has gotten more and more sore but I am  hoping its going to settle for her.

Another surgery complete

Like every other time she has had surgery I hope and wish that it wil be the last time she ever needs an operation, but sadly its yet to be reality. 


Mikenzee had a nice morning today we knew she was going to theatre this afternoon so did lots of distraction this morning, as Mikenzee gets older she is getting more scarred of people, Drs  surgeons pretty much every one even the nurses to come extent, the nurses at PMH have just had there uniforms changed they now wear scrubs the same as the Registrars and Residents, and well it has made Mikenzees anxious as she knows that them scrubs equal drips and poking and prodding. Any way the morning was ok she has minimal issues had a new drip placed in the early hours and went back to sleep and then woke up and had forgotten about it. She has no feeds running just her IV fluids which always makes her smile, I had bought her a new book so that was even better, and then the play lady brought her in a Fairy princess dress which she LOVES, that made her morning she wore it right up until we took her to theatre.

 Playing stickers in her fairy princess  out fit 

to tired now I think i need a rest in my fairy princess outfit

Then Mikenzees daddy came to see her he has been working away for 4 weeks so was pure luck that he got back the day she had to go to theatre, so it was lovely for her to see him before she went in and then when she got out again, Although she asked him for a Drs kit as soon as he walked in the door, She is super excited as she knows he is bringing on in tomorrow. 

Then come the not so nice part of the day, we did the usual routine Daddy carries her down to the doors of the theatre area and then I take her in and cuddle her while we wait to go through, they do all the checks and what not, Mikenzee would not look at any one just kept her face against me so she could hide from them all, the good thing is they all know what she is like so they make it as easy as possible for her.  I took he though and this time she knew what was going so was really scarred but thank fully that was all done nice and quick. 

The operation its self well well,  Dr W spoke to us as soon as she had done they cleaned out the cavity and got a swab of it to check for bugs, and put a soft drain into it to keep it open and out a drain bag over it, it looks like a straw to be honest.  She has had some blood sugar issues this afternoon which is pretty much expected with Mikenzee, but she is doing well. We have started feeds slowly and plan to up them as she tolerates.  

Mikenzee is still positive for C Diff and is on the appropriate treatment so hopefully that will be gone very soon, once she is on enough feeds to maintain her sugars we will be able to go home. Hope fully with the new drain in all will be good. 

Monkey is sleeping soundly now, and hopefully has a good night she certainly needs a good night sleep to help get her on the mend. 

What a day

My little monkey

Today was one of them days that nothing could go right for little Mikenzee, from the moment she woke up it went from bad to worse, for those that don't know Mikenzees medical issues well, she has a condition where if she isnt getting sugar and LOTS of it into her system at all times she drops her blood sugar levels dangerously low, now its manageable as long as we have some sort of access into her body to get sugar into her. As usual we ran into our normal problem of Mikenzees IV tissuing meaning we had to get a new drip into her, Now this should not be an issue how ever Mikenzee has very bad veins.


The dr was trying for over an hour to get a drip into her, at one point he had it in but was trying to feed it through for about 20 minutes, Mikenzees sugars started of at 3.8 and for Mikenzee any where from 3 to 4 she gets very much like an obnoxious drunk, so the poor Dr and me and the nurse was copping insults left right and centre, Thankfully the Dr that was dripping her at that point, after another had tried and failed knows that Mikenzee is not usually so insulting and that she gets like that when she is a bit low on sugars, we however got past that as she dropped lower and she just led there while he dug around for a vein, We got one finally and she was able to get her bolus of sugars and was coming good again.


Then came the real trying part of the day, we had to go around to the dreaded contrast study room, This is the room where she has been tortured in for the last 5 yeas so she just screamed and gagged and shock the whole time petrified that they was going to put the contrast into her tummy or push tubes through her bowel, Its so sad to see her like that its not a tantrum and believe me Mikenzee chucks good ones its a real fear scream she is petrified of that room because she knows of the trauma she has gone through in there. All we was there for was to check the tube for any leaks but Mikenzee did not understand that.  So  they did the contrast and as we suspected there was no holes in the tube and the exit of the tube is a lot lower then where it goes into the bowel ( about 3 foot) .


We then started on the plan of action which was to re start the feeds and allow it to re collect in the pocket that it has been so that they can se exactly what was going on and formulate a plan from there, with Mikenzee often the best way to figure out what is gong on is to recreate the issue in a controlled environment, we then had a visit from one of the medical Drs who had read the scan and seen that it had not leaked out of the tube and there for it was not leaking so all was fine, and that the scan of her small bowel was essentially normal. ( if only things was that easy right ).


Then the surgeons came around to tell me that they had viewed the contrast study and yes it confirmed there was no holes in the tube which means that the leaking is from the bowel ( which we suspected ), also that her contrast study was by no means normal, as a large portion of what they put into the tube further down her bowel actually refluxed back up the bowel in the wrong direction about 3 quarters of the way up the tube, then some of it sat there some of it moved. This was no great shock as we already know that this is what goes on in Mikenzees bowel.


So the plan is Mikenzee is going to theatre tomorrow afternoon to have the cavity all cleaned out and stitched and glued back together, they are then going to put a tube into her bowel that will drain that portion of it ( like it was before the surface closed) so that hopefully we wont have this issue again. The surgeon that usually does Mikenzees operation is over seas at the moment so another surgeon is doing it, But we are lucky Dr W that is doing the operation has known Mikenzee for years and has been involved in her care and has looked after Mikenzee over the years.


Im nervous and sad that Mikenzee needs more surgery, but looking at the positive side that once its done we will be able to get her back to her normal, She was so good for about 3 months and the last 3 weeks she has gone down hill so from that point of view its good to know why and that there is a way to fix it.

Our positive point of the day was Mikenzee completed this puzzle all by her self, and was very please with her self and asked me to take a photo :)

The lump and tube issues have put her back in hospital

So we held out as long as we could do at home, All day yesterday Mikenzee has bad tummy pain, she was ok to play but held her tummy and got upset with it and protected it all day. Once I put her to bed and she wasn't moving around the lump got bigger, So going back to the theory we have gone of in past ( the plan her Dr G came up with ) I switched her over to glucolect plus dextrose into her J tube as the idea is that with out the fats and protein her body wont produce the bile and there for stop leaking, this used to reduce losses in the bag and seen this is leaking from the same spot only cant escape from the body it stands to reason that the same thing would reduce it again. 


All went well at first her sugar went up so that was good meaning she was absorbing the glucose and dextrose, well so it seemed, I checked her sugar a bit later and she has gone down to 2.2 by the time i had got her glucogon and added more dextrose she was at 1.9 so a trip in my ambulance was needed, her sugars came up after a while with dextrose and glucogon but only to 4.1 which is fine and safe but not a great response to treatment. 


Once we got here after being on clear fluids for a few hours the lump had gone down a bit, the excess had leaked around the tube and I think back int the hole not really sure, Even though it had gone down a bit it was still very noticeable to the ED Drs so they stopped anything going through the tube as well its not good to have fluid leaking into the cavity, especially something as un sterile as bowel fluid ( yuk ) .


So tomorrow they plan on doing a contrast study to see if there tube is leaking anywhere in the tract causing the collection, I don't think it is due to the fact its in the same spot as where the fistula is only the surface of it has closed, Like the surgeon said just because the out side has closed it doesn't mean the inside has as well. 


We wont know anything until tomorrow I guess, I just hope what ever it is we can get it sorted so that she can get back to being well like she was a month ago. 

Nothing is ever simple ( warning: medical pictures that I have taken incase I need to show her Drs)

Things aren't going great with Mikenzees guts right now, As i said yesterday she has managed to close one of her stomas but the other ones are now coping a pounding because of it, I just picked her up from school where she has done really well and had a FULL day first time in ages, So proud of her. Anyway got her home and she was as usual pulling and poking her sore tummy, So i had a look to find yet another leaking red tube site and a rather suspect looking tube tract.

This is what her tube site is looking like, It should not be leaking bile at all

This is the stoma/ fistula that ha closed which is likely what has caused the leak in the picture above

This is the suspect looking lump that I am feeling rather un easy about, Mikenzee goes mad if she pumps it or when i try and clean her belly :(.

Now none of this is what we would immediately rush her to the ED for, but it does make us kind of uneasy, as its things that should not be happening, and well with kids like Mikenzee it can go either way be totally fine or totally not fine, Just have to wait it out and see what way it goes. 

I have my suspicions that this is what caused her infection the week before last which intern caused the subsequent infection last friday, but I don't know that for sure its just a uneducated mummy guess, So will wait it out and see what the deal is I guess.

Mikenzees poor education assistants at school are having to do frequent nappy changes on her at the moment which I know isn't an easy task as it takes two assistants and a lot of convincing for her to let them do it. Im so great full that she has such wonderful assistants and teachers at her school they really are fantastic and worth there weight in gold, I think like nurses teachers an assistants are HUGELY under valued. 

On a fun note they did cooking at school today and made fruit Kebabs, Mikenzee brought hers home with her and is still playing with it, she is rather impressed with her efforts and keeps telling me i can have it for my dinner after she has finished playing with it. I think I shall decline as it has been getting squashed and squeezed for about an hour.  While Mikenzee and I sit on the couch watching Dora the explorer after all this time its still one of her favourites.

Such a Princess

So this is where my princess sleeps, her room is all pretty and her bed is like any little girls dream, different shades of pink and purple full of butter flies and love hearts and of course the odd flower, what girl doesn't like flowers. 


Her matteres was specially made for her by the sleep clinic as she cant lay down flat as it makes her reflux play up and gives her head ache, So she had the wonderful mattress made and got a lovely temperature controlled sheet to keep it perfect for her all night. This was all done to help her sleep better,  but do you think it has of course not little monkey prefers to sit up most of the night cuddling mummy and then spend her days being so tired and exhausted she can barely function. Why? cause she is five and she figures she can, I guess. 


After coming home from school early yesterday Mikenzee was pretty tired and ratty all afternoon complaining of her belly being sore and touching her side, where here tube tunnels through to her small bowel, I had noticed over the past few weeks and in particular the last few days that her abdominal fistula was closing over, as the out put had decreased, I assumed that this could only be a good thing, this morning i see that it may not be a good thing as she has now sprung a new leak around her J tube, filling up her dressing with bile, making all the skin red raw and making it hard for the tape that hold the tube in place to stick and do its job. Is this a bad thing i don't really know will have to see what the Dr has to say about it, is it a good thing I'm thinking likely not. Mikenzee for one is not keen she keeps grabbing her belly saying "tummy hurt" and grabbing her side and rubbing it like its annoying her. 


Either way its going to be a quiet day for Mikenzee and I including lots of play dough, and reading and of course her favourite, My least favourite cartoon, Special Agent Oso. I am sure Mikenzee knows i can not stand it hence why she wants to watch it none stop. The advantage I have is that she has yet to figure out how the foxtel remote actually works. 

Who ever said pre school was easy ??

Well, who ever it was couldn't be more wrong. Well maybe for some its easy but for little Mikenzee and many other children like her its far from easy. 


Right now we are fighting the education department about education assistant time, thankfully Mikenzees school is fantastic and are providing her with a full time assistant any way, they are just having trouble getting the education department to pay for it. 


We have submitted Mikenzees ACC plan from the hospital as well as this following information with links to all the things that effect Mikenzee on a daily basis, well not all the thing as some of her conditions didn't need explaining but for the ones that did this is what we submitted.

Ataxia  http://en.wikipedia.org/wiki/Ataxia 

Arnold Chiari Malformationhttp://www.chiariaustralia.com/what-is-arnold-chiari 

Hypotonic CP http://en.wikipedia.org/wiki/Cerebral_palsy 

Russel Silver 'like' syndrome http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002189/ 

Mikenzee also suffers from Brittle Hypoglycemia, if her feed lineb is kinked or disconected, leaking or broken while at school and she does not get her full feed for as little as half an hour her blood sugar level will drop dangerously low, which puts Mikenzee in immediate danger here is a link to explain what Hypoglycemia is http://en.wikipedia.org/wiki/Hypoglycemia. 

Mikenzee is also 100 percent tube fed and is conected to her feeding pump 24 hours a day and while Mikenzee is at school her teacher needs to check the lines every half hour to make sure that there is no leaks or breaks or anything wrong with the line. For this Mikenzee has a Jejenosomy feeding tube, it is not like an ordinary peg tube is is a tunnelled broviak line, if this tube is dislodged or snapped, Mikenzee needs major surgery to replace it.

Mikenzee also has a PEG  button into her stomach for her stomach to drain, her teachers have to constantly remove air from the bag so that is doesnt split and more importantly so she doesnt vomit and aspirate her gastric fluids onto her lungs

Mikenzee also has a wheelchair that she uses but is unabe to self propel so the teachers have to move her around the room, She can walk a bit but due to the ataxia she falls over a lot and is unsteady, if she falls over and hits her head it can be very dangerous because of her Arnold  Chiari Malformation, if she falls over and pulls out her feeding tube it is very dangerous it will mean she is unable to get her feed untill we get her to hospital resulting in her being hypoglycemic and her needing surgery. 

Any way with all that submitted and a signed form from her Drs its still not enough, so now we have to get more paper work from her Neurologist, pead, and endocrinologist. Hopefully then they will have enough information to do what they are payed to do. 

Thankfully her teachers are fantastic and so is the Principle they are fighting the education department with us and are behind us 100 percent, as they know all to well how dangerous is would be to have Mikenzee at school with out a full time fully qualified assistant. 

Today was Mikenzees second day back at school for this term,  and for the second time this term they had to call me to come and get her, as she was in pain with her belly and had no energy, I got her home and all she wanted to do was cuddle on the couch. Hopefully she will have a better day tomorrow at home. 

Mikenzee with her school certificate 

So i was never going to do a blog, never going to be one of them mums thats blogged all about her childs medical issues, I don't know why as I love to read my friends blogs about how there little ones are getting on, especially in during the bad times, when Im thinking of the little ones, and more so when they are going well and I get to see there kids having happy times.


So here it is, I have started a blog I will try and post frequent updates I know for one if I don't my dear friend Lindsey Knops will nag me to, as she still hasn't forgiven me for not updating Mikenzees care page :).