Two Steps Forward One Step Back

It has certainly been a busy couple of weeks since my last post.  Early this afternoon my little princess was moved from the paediatric ICU back to the children’s ward.  Such a welcome change.  Although it was very reassuring to know that a nurse is just outside the door in the PICU it was a good feeling to know that my ladybug is finally well enough to be transferred back to the ward.

Since the surgery the next item on the agenda was to change over the G-Tube feeds from Pedialyte to the actual formula. The transition went smoothly for the first couple days I even came home Friday a wee bit early to get a good nights sleep. Then when I came in the next morning the acid reflux had returned with a vengeance – screaming, arching, vomiting.  As bad as it sounds coming from a mother who loves my daughter dearly it was quite comparable to the scene in the exorcist.  All kidding aside it meant that the formula would have to stop and we would return back to the pedialyte. Two more days passed and once again things seemed to settle. Today the  non-dairy, non-soy formula Nutramagen (which by the way smells just as horrific going in as coming out) was started again.  Aside from a lot of discomfort, and arching it is being tolerated.  One day at a time.

A request has been put in to finally get an MRI done while we are in the hospital.  Especially since the clerk cancelled the out-patient one we had been waiting over 7 months for. (Once again props to the “fantastic” Ontario medical system) It’s just a matter of getting the OR time and an anaesthesiologist to coincide with Neurology for the MRI  because she will have to be put under a general anaesthetic.  Oh and since she will already be sedated cardiology wants in on the festivities to do an echocardiogram.   Seeing as every team who is looking after my daughter wants this done I’m happy we are finally seeing some progress.

I guess when one spends an extended time in a children’s hospital one is likely to be recognized by many nurses – well my sweet little princess was getting a reputation for being quite the diva on the ward. In fact, when the night nurse came on she already heard how adorable my daughter and that as soon as she wet or soiled her diaper she demanded a new one be put on that instant. (I’m with the ladybug on this one I wouldn’t want to sit in a soiled diaper either) Don’t even get me started on if the soother comes out – she will be all sweet, cooing smiling and then if no one helps then the adorable little diva appears.  I’ll post some pictures down the road but she has great big eyes and long eyelashes and even for the nurses it’s hard to refuse a cuddle only fueling their diva nick-name.

My hope is to be out by end of the month – with any luck the 29th because that’s when my most recent parking pass expires and I would really hate to have to keep giving the company that owns the parking more money.  

Once the feeds are back to normal my daughter will be able to start her Vegabatrin for the Hypsarrhythmia (mild form of infantile spasms) and if those meds are tolerated we will finally be homeward bound.