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Sunday, October 31, 2010

Heading off to hospital

They have found us a bed for tonight (Monday 1st November) on Camperdown Ward, which is as good as it gets (although later than scheduled). I won't be taking my laptop as its a pipe dream thinking I have time to so much as turn it on and its just more things to carry so I will update when I get home.

Our plan for Oscar has been to double his dosage of anti-viral medication leading up to this next treatment in the hope it might stop the herpes from coming back in his mouth and maybe reduce the extent of his mucousitis. The Dr's don't think it will work but it is worth a try. I really hope it does because getting 21 syringes of medication into him daily hasn't been easy and he deserves some reward (not that we always get what we deserve). So we are hopeful and know we have done all we can.

Please send us some positivity to keep the momentum going, to stay sane in the insanity that is hospital and amidst so much sleep deprivation. We want to bring Oscar home and keep him out of pain and out of hospital until the next treatment. Fingers and toes crossed.

Monday, October 25, 2010

Back from Hospital

Sorry for the lack of postings recently but we have been in hospital and life has been intensely challenging. I don't think I can possibly come close to describing the couple of weeks we have had. I wish I could but its beyond me. I will try to do a rushed summary.

As we were unable to get a bed on the chemo ward (Camperdown Ward) we did have a more difficult time with Oscar's treatment. They don't have as many nurses registered to administer chemo and they got the dosage of his anti-nausea medication wrong. He was violently ill vomiting and this made him even more scared and anxious. One time he vomited on me, all through my hair and clothes, and there was nowhere safe to put him down and he was still heaving and hysterical so I had no choice but to wait for a nurse to come and help me. I stood holding him covered in vomit for 30 minutes and kept thinking about the warnings we were given to clear away vomit immediately as the chemicals in it from the chemo can change the DNA in a healthy person too. What could I do but wait?

They also forgot to book him in for a lumbar puncture which meant I had to get emergency to arrange it and we were told he may not go in until 5pm. He was hysterical with hunger and anxiety at 9am so I didn't think I could manage this day on my own. So far every single one of his anesthetics I have been on my own with him and managed but on this day he needed more than just me. I rang Pete to ask for help but he couldn't do anything and I asked for him find someone but no one came and in the end I was lucky that they took pity on Oscar and let us go ahead in the queue. Thank heavens for the kindness of strangers. It was the worst one so far as Oscar was so hysterical and would not stop screaming and hitting me. The nurses, Dr and anesthetist all helped me so kindly and it was reassuring that I knew each of them from previous procedures and that they were confident in knowing Oscar. This helped a lot.

It was an horrendous day and I was so glad it was Friday and that hopefully someone would be able to come and help me over the weekend. When you are there on your own you are not allowed to leave your child unattended, understandably. This means if you want to get something to eat, go to the toilet, have a shower, go to pharmacy to pick up a script or anything else - you just can't. There are volunteers that will sit with your child but you have to book them ahead and when I have tried this Oscar gets too upset as he doesn't know them and he finds hospital still scary. In fact, I would say he is more scared of it now than he was at the start because he knows what's coming and he barely sleeps there unless being cuddled or sometimes in the pram. It's just a matter of surviving until they let you come home - once home, he transforms very quickly into the happy boy we know.

This time however, less than 48 hours after being discharged we were back in emergency with a very very sick boy. He had mucousitis throughout his mouth and down his digestive tract. This means he had ulcers of the mucous lining all the way down to his anus. The Dr's say the pain is significantly worse than tonsillitis and put him on a morphine pump to keep him comfortable. There was nothing they could do to fix the ulcers, you just have to wait for them to go. This is all a side effect of the chemo but it was quite severe this time. He was also vomiting every couple of hours which hurt like hell with the ulcers. I questioned the Dr's about the vomiting and a number of them said it was caused by the mucuousitis but this didn't make any logical sense to me. How do ulcers cause vomiting? So I kept at them and asked to speak to the head Oncologist because I thought it was the morphine making him sick and no one would listen. Thankfully the Oncologist agreed with me and they took him off the morphine at her request and he never vomited again. I wish they had listened to me at least 24 hours earlier as it would have saved Oscar a lot of pain but was so grateful when he finally stopped vomiting. He had slept on me day and night for three nights and was just as miserable a little being as one could ever imagine.

Fortunately, he is tenacious and keeps fighting back. Once we had the pain under control he started to take small sips of water and after three days of not eating he was able to have a small portion of yoghurt. Each day he improved in very small ways until we finally came home yesterday. Hooray! I have never felt so blessed to be in my home again.

Auden has been finding the absence of his brother hard and when we arrived home he rushed up to Oscar, put his arms around him very gently in a hug and said, "It's good to see you baby". Ah, my heart overflows - there could not have been a more divine homecoming moment.

We were in yet another ward for this last week, Clancy Ward, and we shared a room with a 7 month old baby who had been abandoned by her parents and an 11 year old who didn't get many visitors either. The baby lay in its cot without making any noise virtually all day, knowing that no one would come. She just stared into space and lay around looking at her own fingers. I started talking to her and she would smile the minute I walked into the room. Each morning I opened her curtains and put some music on for her and talked and sang to her. She loved every minute of it. So it was extremely hard leaving her knowing she is just going to lay in her cot waiting for the nurses to tend to her in between the million other things they have to do. It's amazing how well she has adjusted to life in hospital and incredibly inspiring to see the Ward Granny volunteers who visit her and cuddle her and give her some love. It makes you realise how generous so many people are.

So the next time you are feeling disappointed in your mothering, annoyed that your children won't eat dinner, worried your not feeding them enough or feeding them too much or disciplining them in the right way, or the next time someone criticises the choices you make as a parent - stop and think about the children who really are deprived and remember just how lucky your children are. These days there is so much pressure to get everything just right and so little comprehension of what real needs are and what true deprivation really looks like.

We will be back in Clinic Thursday to book in for the next treatment. The Dr's say it is likely the same thing will happen again so we may be spending most of our time in hospital in the next month but we are going to do everything we can to avoid that reality. If all our efforts don't work then we will surrender to more hospital time and focus on keeping Oscar as comfortable as possible.

Thanks for all the kind text messages and support. Life is very full on and we are blessed to have you all out there thinking of us.

Wednesday, October 13, 2010

Finally heading to hospital under less than ideal circumstances

We have been waiting for a bed for Oscar since Monday but the hospital is so overcrowded they have been turning many away. The scary thing is that the Dr's can't guarantee that this delay won't have a negative impact on Oscar's overall outcome. This is his life we are talking about people! The staff seem genuinely distressed and have managed now to find us a bed in Variety ward. This is where I had the bad experiences with the nurses from hell who don't know how to do chemo because they aren't oncology nurses. And we are going in to hospital specifically for chemo treatment.

I feel very nervous and would appreciate any prayers or assistance or even a visit. I am going to be there over the weekend which is even worse because there are no permanent staff or nursing unit managers to ensure your care is sufficient.

I know that the lack of beds and the state of the hospital system is in the news at the moment. From a personal perspective this journey is as hard as it gets without any additional stresses being added by the reality that your child is not getting the optimum care. There is absolutely nothing I can do about this except make good file notes, keep advocating on Oscar's behalf, staying calm and surrendering to the greater good of Oscar.

Some how, some way I am determined to turn this around for Oscar and make sure he has a good stay in there. Please send me some positive thoughts.

Friday, October 8, 2010

Some photo's

Playing with Pa

Hanging out with Daddy and chocolate

Oscar driving the car


Hanging out with Daddy and donkey

Auden giving Oscar comfort

Water fun

Hanging out with brother in our pjs

Tuesday, October 5, 2010

Oscar seems improved today and more his usual self. The nausea has reduced significantly but the mouth ulcers are still huge and there are a lot more little one's as well. He cannot eat anything but ice, icecream, yoghurt and milk shakes with fruit in them - and he can only eat those after I have applied a topical anisthetic. Trying to get near his mouth to do this and give him his other meds is very distressing but the rest of his time today he was pretty happy. More his usual self anyway. A nurse will be visiting on Thursday to flush his central line and check his mouth. Next time I'm getting stronger pain killers for him so he doesn't have to suffer as much and so I can get a bit more sleep hopefully.

So now we just need the ulcers to clear before they give him his dose of chemo next Tuesday or else he will be in a bad way after that. At least we will be more prepared and know what to expect next time.

Each day is one day less on the schedule of treatment and we still manage to fit some fun in most days. The nurse thinks its a miracle we haven't ended up in hospital with his mouth the way it is and can't believe he's still eating - so we are doing well.

We hope you are all doing well too. x

Saturday, October 2, 2010

Fingers and toes crossed and happy birthday from Oscar and Auden

Fingers and toes crossed Oscar doesn't end up in hospital as he is suffering pretty badly with some very nasty mouth ulcers and nausea and vomiting. We are keeping his spirits up by making rocket shaped ice blocks for him to suck on and trying to keep his medication in him. What he would like to be doing today is playing with Ethan at his birthday party.

So, we would like to send out a huge happy birthday today to Nanny, who turns 60, to Ethan for his 3rd birthday party and for Auntie Lisa for yesterday. And that's just in the last two days. Its a crazy week of birthdays so we hope Oscar can recover enough to get out and party with you but, if not, we will light a candle, have some cake and sing for you anyway. Have a great day Libran people and may your wishes come true. x