Friday, August 14, 2009


The last few weeks have been tough. The team from South Eastern Palliative Care and the Childrens Palliative Care unit came out to the house. The main objective was to explain what they do and to provide us with the help and support we need. It was information overload. They offer a lot of different things; nurses, doctors, counsellors, respite, music.

The Childrens unit is putting together an application for some respite. We are hoping for a few after school hours because even if Ethan is well enough to attend school he comes home completely stuffed. It is then very hard and difficult to go to the girls after school activities. We've had nights where Ethan has cried for hours because he's completely buggered and can't manage another thing other than to sob. The girls are very caring. They love him lots and have offered to cancel all of their activities and stay home to help but thats not fair on them. They are torn between being kids and being nurses. We have relied on friends to take the girls which is the easy option for me (if you can call staying home caring for a sick child easy) but also very hard on the girls. They struggle knowing I'm not there because Ethan is too tired and sick. They need us more than ever to give them the support and help they need but it's hard physically to be in 3 different places. I have cut my work hours in half to try and help with this.

South Eastern Palliative Care are providing us with music therapy, counselors and nurses. All 3 kids had a session with the music therapist who is also a counselor last week. Ethan banged some cymbals for a few minutes, was completely stuffed and left the therapist with the girls. The girls loved it. They played instruments and sang. Cherie (the therapist) recorded it and will bring their CD to the next session. The sessions will be every couple of weeks. They are also providing a counselor to speak to me and Luke about how to speak to and how to promote the girls to ask questions and be involved with Ethan's care. A nurse also comes out to the house every 1-2 weeks to check up on things.

A Care in Context nurse from Southern Health has also been visiting. Her role is to provide support within the community. We have put in an application for a short term package through Windermere. We firstly thought of using the package for respite but now we aren't too sure as the Childrens will hopefully be providing us with that. An electric wheelchair is something being spoken about. Eth has a self propelled chair but he can't get from place to place like he used to. He borrows an electric chair at school. The first thing he learnt was how to do dough nuts and use the horn!!

We have had a few paediatrician appointments over the last couple of months. Chris has been great and we are lucky we have a good paediatrician for support. It's just a shame he lives so far away. He has been ordering blood tests and following them up and calling. He has also spoken with our other doctors so that everyone is on the same page etc.

Last week we had a cardiac appointment. A 'Childrens Palliative Care' doctor also came to the appointment. Lots of issues were discussed. It has been decided that Ethan is not for resuscitation. The palliative care Doctor will come out to the house next week to sign all the paperwork and they will provide everyone involved with him the information. Ethan has also been grounded, no flying. All holidays will be planned with the palliative team to provide support at our destination. It was also mentioned that Ethan's heart could fail him suddenly at any point and that we should word the girls up. However with saying this, things could progress slowly. They have no idea and couldn't give us a time frame. Ethan is still getting bad leg pain. His calcium is now in normal range but his Vitamin D is low again. He has started a supplement for this. I am trying to remain optimistic that the leg pain is from the low Vit D and not because they are suffocating with no oxygen. He is also getting headaches and becoming hypoxic. So the chances the leg pain will stop is very slim. When the palliative doctor comes out next week she will be bringing some drugs to be kept on the top shelf. He is also using the oxygen lots. We have a monthly limit which we have just gone through in 1.5 weeks. Next week I will be chasing up the respiratory team who provided us with the oxygen for an increase. They also need to sign off on the oxygen company being able to drop the oxygen off at different locations and get a converter for school.

Ethan has just received a Palm Top 3 through the Aids and Equipment Program. It is a computerised communication device. He loves it. It is like his communication book but it is computerised. He uses a stylus to enter different areas and can even type things in that aren't programmed into it. We can also record Ethan's news on it. When the dogs bark Ethan goes to the door and yells 'shut up', today I heard the computerised voice of his Palm Top saying 'shut up dogs'. It was very funny.