Thursday, August 26, 2004

chemo part 4

Ethan was admitted on tuesday for his next round of chemo. After a good week at home he weighed in at an almighty 11.1Kg. He has remained happy during treatment this week and has even learnt some more signing, we just wish he could say it. His weight is still an issue because it went down to 10.6Kg. Nothing much else to report.

Friday, August 20, 2004

going good

The last few days have been wonderful. We have all enjoyed the taste of normality. (If you can call this normal!)

Ethan is still having naso gastric feeds. He is tolerating these better than before, so I have been able to bolus a few feeds and run it at higher rate overnight. This allows him to have a rest from pushing around the pump during the day. I'm not sure whether he forgets or is just protesting about the pump being in a bright pink dolls pram but sometimes he walks off with out it!! He managed this yesterday and the tube came out. This usually would require a trip to hospital to have it reinserted. It felt like we had just been discharged and we weren't going back!! So I crossed the line once again and became nurse mum! It is good to know that he tolerates this.

He still has a snotty nose and is quite mucusy. This has caused the odd little vomit but nothing major. Hopefully he can fight it off before chemo next week.

Tuesday, August 17, 2004


On Monday the port needle was removed and oral antibiotics commenced. The consultant wanted the needle removed to limit the risk of further infection. The plan being that if he developed a temperature above 38 a peripheral line would need to be inserted and IV antibiotics commenced again, if he remained afebrile for 24 hours we could go home. The latter was achieved and we were discharged on oral antibiotics today. He had blood tests prior to discharge and his counts are coming up and all is looking well. The plan is to stay home for a week and go back next Tuesday for the 5 day cycle, fingers crossed!

I was able to speak with Ethan's consultant yesterday in depth about what happened on Friday. He agrees with the respiratory doctors, that it was all due to the RSV and asthma. He doesn't agree it was pulmonary edema or anything to do with his heart. This is a huge relief.


Sunday, August 15, 2004

More infection

On Friday at Monash it was noticed that Ethan's port site was looking red. The port needle is meant to be changed weekly to help prevent infections. This was due last Tuesday! The port needle was changed and sent to pathology for testing.

Ethan wasn't as chirpy today. He had a 5 hour arvo sleep and still settled at normal time. He is still suffering with temperatures and his heart rate and respiratory rate are also up. This is a concern as the antibiotics should be working by now. He has also been commenced on a daily hormone injection to help boost his counts.

The doctors believe his port site is redder and is another cause of infection. The pathology report from Monash was followed up. The needle grew a skin bug, so they broadened his antibiotic cover. Hopefully this works and the port site heals. His port is vital for treatment. If the infection becomes worse, it may need to be taken out which would involve a general anaesthetic and delay treatment or even worse the infection could travel the same path thru his vein into his heart, leading to endocartitis and more heart surgery. A concern that most likely wouldn't be an issue if the needle was changed on time..

He is already struggling with the treatment and the thought of more surgery is heart breaking.

Saturday, August 14, 2004

pulmonary edema

The temperatures appeared to be getting worse. The respiratory doctors reviewed Ethan and decided a bronchoscopy was needed. An hour later I was told it wasn't needed. I didn't like the thought of a general anaesthetic with him so unwell so this was a huge relief. They had reviewed the tests once more and confirmed RSV, pneumonia and asthma. They changed his antibiotics and started hourly ventolin nebulisers. A side effect of ventolin is hyperactivity. The high heart rate and respiratory rate were here to stay for a while!

I decided to give him a shower and freshen him up. In the shower I notice he was bluer than normal. (The oxygen was already running at 2l/min via the prongs). He then developed goose bumps and looked as if he was going to have rigor. I quickly got him out of the shower to notice the bluer tinge he had was now a grey/purple all over. The buzzer was rang, the monitors put on and oxygen at 10l/min via a mask was commenced. His sats were in the 50's. His heart rate was powering along at 175bpm and respiratory rate and effort were extreme. The respiratory team came back. He was very wheezy and they ordered continuous ventolin for an hour. They also said he was too sick for the ward and an ICU review was needed. The ventolin was commenced and by the time the ICU doctors came, he was as high as a kite. The hyperactivity was now being seen in his behavior. He was still working extremely hard with every breath but he was oblivious. He was wiggling on the bed and playing kicking games with the ICU consultant.

The ICU consultant believed he had pulmonary edema (fluid in the lungs). He ordered some lasix to help him wee any excess fluid. He believed his oxygen levels were low due to shunting of blood through his VSD, which limits the blood flow to the lungs. He was too interactive and happy for ICU at Monash but they needed him were they could monitor him more closely. We were transferred, code 2 to the kids.

We went via the emergency department and were then admitted to the 5th floor. I decided not to stay overnight but told them to call if needed. I got home late and didn't sleep much before getting up at dawns crack to get back there. (It would have been better to stay). I didn't know what to expect when I got there. I prepared myself and went in. There was a nurse in the room (not a good sign) , she was trying to put his oxygen back on (a good sign!) He was sating at 88 without any oxygen! I don't know what happened in the few hours I wasn't there but a huge weight lifted of my shoulders. He even decided to try some food.

Not sure of the plan from here. He needs to continue with the antibiotics and they have slowly started his naso feeds. Hopefully we get transferred back or even better discharged early next week.

Mon, It must be hard watching the Olympics knowing you and Luke would have been there. We are extremely grateful for the decision not to go and we are even more appreciative of your support and care for us over the last few months. We are lucky to have you. Thank you.


Friday, August 13, 2004


Over the week, Ethan has progressively worsened. The RSV was still causing coughing, followed by vomiting. His weight issue also became a bigger problem with him now at 9.7Kg. On tuesday afternoons, the oncology doctors, social workers, pharmacy, dietician, physio, nurses and day chemo staff all meet and discuss the plan. They decided to start a top up feed plan that goes straight into his veins (TPN). This has to be metabolised by the liver which creates more side effects issues, but he needs to be beefed up so there isn't much choice.

He had been dehydrated, so fluids were commenced, and his next weigh in was 10.4Kg. Unfortunately this was all retained fluid. He was starting to look flat again, so antibiotics were commenced. They were hoping to stop any bugs brewing, but the next day the fevers began. This made him even more flat and miserable as he had increased heart rate and respiration and low sats. The oncologist got the respiratory doctors to look at him to see if it was still just RSV. They believe it is RSV, right lower lobe pneumonia and asthma. They started an asthma plan and are going to review him today. If he is still getting temps they are considering a bronchoscopy to test for a rare bug that chemo kids are more likely to get.

Monday, August 09, 2004


Chemo finished last thursday as planned. Ethan picked up the RSV virus during the week, the coughing is causing vomiting so he hasn't been able to come home yet. He did have some short stints out on the weekend but was back on the ward by dinner. He has lost some more weight, hence his resemblance to Gollum.

Tuesday, August 03, 2004

code yellow

Ethan continued on antibiotics and oxygen until thursday when he was given the all clear to go home. The plan being to have the weekend at home, have a cardiac catheter on monday and admission to Monash for chemo on tuesday.

As it turned out, we all had gastro, and the weekend didn't work out as planned. Ethan normally gets the worst effects of any bug going around, but other than a couple of vomits and a 39 temperature, he coped the best. We were concerned the cardiac catheter would not go ahead.

Come monday, Ethan was pretty good on arrival at RCH. Ethan's oncology and cardiology consultants had a pow wow monday morning and decided the cardiac catheter wasn't necessary at this stage. His cardiac status is fine at the moment, so he just had the non-invasive tests (echo and chest xray). It was decided to concentrate solely on getting the cancer treated first, then worry about the cardiac stuff later. Made sense to us. Home monday night.

Ethan was admitted to MMC today for his week of chemo, although this appears to be a 3 day treatment for some reason. Slight mishap today in the day oncology unit, when the pump infusing the adriamycin fell off the pole and spilt it around the place. The nurse's went into panic mode and got the cytotoxic spill kit out. Wasn't impressed with the situation.

Anyway, Ethan got to his bed, watched some Thomas, and went down for the night.