progress report

Sorry to all those regulars waiting patiently for an update...

Ethan commenced the drug sildenafil on the 2nd April. I had forgotten how scary and nerve wracking new things are. The staff discussed all the side effects and scenarios and went about their business. They started with an early dose so that if something went wrong there was an abundance of staff, luckily for us everything seemed to run smoothly. During the admission Erin was very unwell. We couldn't keep her awake. Ethan also managed to come down with this bug. Very hard to monitor him when you can't wake him! The docs were happy that all limits were fine and that sleeping isn't linked to the drug. It was the subjective things we couldn't monitor like blurred vision, headaches, dizziness, pins and needles. We just had to hope that when he woke he was comfortable. The sildenafil has not made him worse and it hasn't made any difference to his daily life but on average his sats are sitting a little higher which means nothing if he can't walk or do anything anyway. During this admission Adele turned 5. Another family birthday celebrated in hospital..

Ethan has also had a chest CT which shows he does not have bronchiectesis. It was a mixed appointment. I should have been very happy. A good report but we have been treating him with tune ups for years and he is symptomatic of it. I asked if there was a mix up with the results. Dr Armstrong was also suprised and despite the good report Ethan still needs nebulisers and physio sessions twice a day. So does the report mean anything to our management, no.

Ethan has also had a month of cardiac monitoring. A few rhythm changes were detected but not enough to worry about, which indicated his fainting episodes are from the pulmonary hypertension. He hasn't had any more fainting episodes but he doesn't push himself and is not as active as he used to be.

We are currently in the process of applying for funding for a wheelchair. The wheelchair is measured and made specifically for him with oxygen basket and tray etc. We were told originally this could take up to a year but luckily for us there was a cancellation and our report said urgent. We got in within a couple of weeks and the chair has been ordered. The hospital funds a few thousand and we pay the out of pocket expense of about $1500. This will be a great help when it arrives.

We had a paediatrician apointment a few weeks ago. I spoke to them about Ethan's sleeping, well lack of sleeping. I was hoping to drug him at night so that I could get more than 1 hour at a time but this is not an option at the moment and we are trying new things to help him feel more at ease. Hopefully something will work. On a better note he has grown and put on weight.

Ethan is currently unwell and has been for a month. The usual coughing, running nose, perforated ears etc. He is unpredictable. Sometimes he lasts a full day at school and other days I have to pick him up early. It is very hard to plan things. I have had numerous times where I've had to stop and go and other times I don't go out because I think he'll need to be picked up and he's fine. I sent him to school today so that I could attend a school excursion with Erin. I have been chosen to attend her excursions in the past but Eth has always been sick and I've been unable to attend. This isn't fair for Ez who also needs her mum so today I took the gamble, sent Eth to school and went with Ez. The bus had to make a detour on the way home so I could pick him up! He is breathing fast and heart rate is up. Not sure what will happen. I know he is sick enough to be in hospital but after 376 inpatient days you get sick of the place!!! I don't count hospital days for the fun of it, I keep a spreadsheet of admissions and diagnosis so I can give it to new doctors. It saves time and effort. This year we have only had a couple of admissions which is good but home management is getting more demanding and tiring. We are already over the medicare safety net and it is only the beginning of May. Hopefully things will settle down soon.

Eth has oncology, respiratory and cardiac appointments coming up in June/July...