Goin' old school

Sophie has decided that she is done with the healthy lifestyle and she wants to rock it old school for a little while.  We had a good 9 month run of being pneumonia free, that came to a crashing halt this weekend.  Sophie was inpatient at her monthly treatment program for the weekend and we were told that she was having high fevers.  I knew she was a tiny bit congested when she went in on Friday evening and I thought maybe it had progressed to an ear infection.  She was seen on rounds Monday morning and no big surprise she has a bad bilateral (double) ear infection.  She also has an eye infection and a left lung that is full of junk.  By Monday evening she was breathing so hard I took her into emerge.  I was afraid she was needing oxygen but she was satting at about 94-95, so not bad.  They did an xray and she does have pneumonia.

To add insult to injury Sophie was bitten, yes you read that right, bitten by another child on Sunday evening.  He left a mouth mark across her middle finger, top and bottom, it was still an obvious mark the next day and even today 4 days later.  This was new territory for me, there have never been many children that are mobile at her program, let alone children with behavioural issues who can walk and talk.  Sophie was bawling and when the nurse asked the boy what had happened he said "bite".  I was (and still am) furious.  I called my girlfriend who also has a child in the program and found out that her child was bitten a week earlier by the same boy.  WHAT????  Let's just say that added fuel to my fire.

The program manager was not surprised when I arrived at her door first thing Monday morning.  We agreed that it was a staffing issue (the little boy does not understand, he is doing it for attention not maliciously) and they need to address this issue now.  We talked for a long time and she took it very seriously, she had just received the report about it when she arrived that morning and was already working on what to do, and had some good ideas.  She was well aware that I was extremely upset and that it was completely unacceptable that it had happened to one, let alone to two children, who I should add are basically sitting ducks and cannot defend themselves against anything like this happening to them.  It was my fears about her future coming true in front of my eyes and it was pretty devastating.  This was a small event that could have been big, she could have had her tube ripped out or any other sort of attacks could have happened in the short time that the nurse had left them alone.  Sophie won't be going back until I have good explanations of the changes that will be implemented.  They are trying to hire 6 new nurses to cover a shortage which is a good start so that the nurses who are there aren't run off their feet and have time to watch the children and create a safe environment.

So my girl has been really struggling the last two days but I hope that she will turn a corner soon.  She is asleep on her mat in front of me right now, not a big surprise because she was up every half hour through the night last night.  Her night nurse was exhausted this morning, as was Sophie.  We have been spoiled this winter because we didn't have any major illnesses and it was awesome.  So we will dive back into suctioning and nebulizer treatments and chest physio and pedialyte with excrutiatingly slow tube feedings and all the other goodies that come with pneumonia and hopefully she will be my healthy smiley girl in no time.

We had a big appointment on Monday in Waterloo which we were given the ok to go to by the doctor.  Sophie went to a special needs vision clinic and we had a great appointment.  Sophie had been to this clinic two years ago and we were given some great information about her vision and ideas on how to assist her to see the world better.  The Dr. was on sick leave for a year so we had a longer stretch between clinics than I would have liked but I was glad we finally got back in.  This was Sophie's first visit post-seizures.  We did learn that she may have some optic nerve damage that was caused by the seizures.  She also has many different eye control issues now that he also believes is due to brain injury from her long seizures.  These issues are permanent, not what I had hoped for but we will deal with it.  She was doing better with tracking and he thought that she had come a long way from when he saw her at 3 years old.  She still has a diagnosis of severe vision impairment with CVI but we were encouraged by what he said overall.  We see him again in another year, hopefully now that her seizures are more controlled now we will just see improvements next time.