Thursday, March 11, 2010


The doctors came out to the house yesterday to review Ethan. It was decided to keep all dosages the same. I'm not too sure how effective the haloperidol is. He seemed a bit happier yesterday but he also had a really good sleep the night before. He still had episodes of yelling and screaming but got over them quicker. I am hoping this is the effect of the new medicine and today will only get better.

He is still spending his days watching DVD's. He likes to forward them to the funny bits and then rewind them to the funny bits. Finding Nemo was played backwards yesterday. He demands someone sit with him while he does this until Uncle Colin gets home and then it's his turn until bed time.

He is still coughing blood. These coughing fits are happening more often. There is nothing we can do other than sit and comfort him and hope the next cough doesn't produce a massive amount of blood. There was some talk about changing antibiotics as infection can cause him to cough blood, but with no other signs or symptoms this seems very unlikely. The most likely cause, and the one we believe to be true, is that the increased pressure in his pulmonary artery is causing the blood vessels in his lungs to burst. We have dark towels strategically placed around the house so that when blood does splatter out it doesn't scare him or the girls. Blood on white stuff always looks like more than it is.

The needle sites were lasting a week but now we are lucky to get 2 days from them. We are trialling a small amount of dexamethasone inserted into the cannula to see if this will prolong the site. This works well with the elderly but the doses aren't as high. Fingers crossed this works. Changing the needle is horrible. He gets so worked up during it, putting a lot of pressure on his heart.

The girls have their moments. Sometimes good, sometimes bad. We have had a counselor come and visit them. They liked her visit but she didn't get much from them. They both expressed trouble talking with friends. The last time Lucy came the girls were very open. She is coming back again so I'm hoping it will be more productive next time.


Anonymous said...

Hoping today is a good day.
Judi & Rob XX

Anonymous said...

I am hoping things become calmer so that you can make some Happy memories. It is such a VERY hard place you are in now, so I am hoping the sun will shine through the dark clouds.
Kind regards
Jo from South Australia

Anonymous said...

sending you and your family all my love and strength. that little boy is so blessed to have you guys and i hope the medication makes his days a little easier
Love Karen Baker xx

Anonymous said...

Hope you have had a much better day and that you get some rest tonight Love Sandra Broadbent xxx

Colin & Fiona said...

I'm so glad that Colin can be there but just wish that I could be too. Am thinking of you every spare moment I have and hoping that the haloperidol and dex will do their jobs! All my love to Eth, the girls and the two of you (and my hubby!) xo

Anonymous said...

That little fella certainly has a beautiful caring family. Our thoughts are constantly with you all - I hope you manage a few hours sleep tonight.'Our love always, Pauline and Laurie