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 :)