Thursday, November 25, 2004

cardiac review

Ethan was discharged yesterday as planned. He is still vomiting so we are staying in close contact with the dietitian. He is otherwise going pretty good.

His cardiac review was today. He had the usual ECG and echo. From this, it was decided a Cardiac Catheter is needed. This has been booked for the 13th December. He will need to stay overnight this time due to his current medical status.

The catheter date interferes with the post chemo tests so we are unsure whether they will take place on the 14th.

Thanks Eleanor and good luck for next year

Bashing the drum

Ethan enjoyed the visit by "Sovereign"

Tuesday, November 23, 2004

still here

We are still in hospital. The plan is for discharge tomorrow; if he remains afebrile.

Our cardiac appointment is now this Thursday. This should help ease our minds about his current cardiac status and the plans from here on.

His post chemo tests have been booked mid December. They are trying to organise having the port taken out on the same day but are unsure whether it can be arranged. This would mean one anaesthetic rather than two.

Saturday, November 20, 2004

more febrile neutropenia

Ethan developed a temperature on Wednesday night or should I say early Thursday morning! Ethan and I had a big night in emergency before being sent up to the ward. They haven't found the cause of his infection but he is snotty, he has a cough and the port is looking pretty crappy.

The night nurse accessed his port for blood tests but it didn't back flow. She said it flushed well and the morning nurses could try later. The morning nurse tried but wasn't successful either so the access was removed. After the needle was removed the port leaked a lot of fluid and some of the swelling went down, apparently the access wasn't in the port, lucky he wasn't having chemo through it! The suture line is also breaking down more.

A surgeon came to look at it but with his counts being low, I told him he wouldn't be touching him. The oncologist came later and also agreed with this.

The plan is to boost his counts, (He is having a daily hormone injection for this) Boost his weight, which is slowly progressing and to continue antibiotic therapy until the fevers stop.

We asked for day leave today to go to the Southern Cross Christmas party at the zoo, we were told we had too chances; buckleys and none! The girls and us went and had a good time. Thanks to the Bells who kept Ethan entertained!

The girls at the zoo

The princesses opening their Christmas present

Ethan playing with his Christmas present

Wednesday, November 17, 2004

weight issues

Ethan was reviewed yesterday. His counts are still low, and he has lost 800g in 3 days. The plan is to keep him out of hospital until review next Tuesday.

I met with Erin the dietitian and hopefully I can slowly upgrade his feeds over the next couple of days. He managed some paediasure yesterday and if he tolerates it today I can add some polyjoule until he gets back to his full feeds.

He is managing quite well at the moment so hopefully this can be achieved before he loses more weight.

Tuesday, November 16, 2004

post chemo weekend

Ethan finished post hydration last Thursday. This would usually mean discharge but he was starting to be short of breath and blue looking. A blood transfusion was ordered. Hopefully this would allow us to stay at home more than one night!

We were discharged on Friday. He was still vomiting a little but nothing we thought couldn't be managed at home. We decided to go to Yarragon for the weekend.

Ethan continued to vomit on Friday and Saturday. We were getting nowhere; Ethan would vomit the tube up, I would put it back down, Ethan would vomit the tube up. Ethan was taken to the Warragul hospital with dehydration. The doctor wanted to admit him and start IV fluids but I didn't think this was needed, so with a little persuasion I inserted the naso tube and started gastrolyte. The peadiasure feeds were stopped. We were discharged with the plan to go back if the vomiting persisted.

He managed to have enough gastrolyte to rehydrate. I am guessing he has lost a lot of weight this weekend. The peadiasure has polyjoule added; the most calories they can do via nasogastric feeding. With this running continuous he hasn't gained a lot of weight (11.1kg on discharge), so I can't imagine him holding his own without it. Hopefully he will tolerate it soon so that he can begin to bulk up.

We have managed to stay out of hospital since Saturday. He will be reviewed tomorrow and hopefully a plan as to the next steps will be decided.

Wednesday, November 10, 2004

end of chemo party

Ethan has managed quite well during his last cycle. He has had a few vomits but nothing major. The doctors have kept a close eye on him. During chemo he has to have high amounts of fluid to flush his kidney and bladder but not too much as it puts pressure on his heart; it's a fine line.

Today was his last dose of chemo (we hope!). We had a party on the ward to celebrate. There was party food, balloons, streamers, etc; the usual kid party stuff. During the morning Erin and Sonia (Challenge worker) made invitations and decorations. It was huge!

Ethan received a few pressies from the nurses and doctors, which he loves. It is all thomas stuff of course!

"Adele, that's gross!"

Eleanor & Annette - Ethan's muso friends

"Thanks Claire and Dzung"

Tuesday, November 09, 2004

cycle 8

Ethan had a blood transfusion last Friday. This made him more comfortable and allowed the oxygen to be weaned. We were seen by Sarah and Dr Jim agrees he should have cardiac intervention sooner rather than later.

The last chemo cycle has started. It has been reduced to 3 days rather than the initial 5 days. He has had a few vomits and has lost weight but he is doing really well considering everything.

We managed day leave on Sunday. We had a family day with Thomas. Thomas the tank, the fat controller, and grumpy the green bus have a show at puffing billy. The day includes a ride on Thomas and grumpy, face painting, a petting zoo etc. Despite the horrible weather we all enjoyed ourselves. It was good to see the kids so excited.

In anticipation

Thomas on the turntable

Adele actually sharing food!

Thursday, November 04, 2004

cardiac concerns

Ethan's vomiting settled and he was looking OK so we were discharged last Sunday with a review planned for Monday. On Sunday night he tolerated the feeds well but was having mild temperatures, and looking a little bluer. We were admitted Monday.

He has lost more weight, breathing faster especially with exercise, sleeping more, and looking bluer. Blood tests indicated his Hb was still a little low but a blood transfusion wasn't needed. He was commenced on antibiotics for the temperatures and a cardiac review was ordered.

Sarah (Cardiac doctor) who sees us out at Monash reviewed him and ordered an echo. The results of the echo were to be expected....his cardiac condition has progressed and needs attention.

The plan:
* a blood transfusion to help improve his exercise tolerance and hopefully make him more comfortable (Having this now).
* stay in for oxygen as required (currently on .75L)
* the LAST cycle of chemo next week
* she will talk to Dr Jim (cardiac doc at kids)hopefully tomorrow and then let us know of the outcome.

Cardiac intervention will be sooner rather than later. If he didn't have cancer a cardiac catheter would have been done in July/August so we are lucky we have got this far before intervention. It would have been a nightmare if chemo had to be stopped for cardiac reasons. We will be in hospital for a while! Readdress mail to: c/o 41North, Monash Medical Centre!