new port

Ethan had a new port inserted yesterday. This went to plan with no complications. His third nipple is now positioned on the right! He handled the surgery well with the only problem being a little pain but nothing some pain killers couldn't control. He was reviewed this morning and chemo was commenced this afternoon. He put on half a kilo in weight due to all the fluid so some diuretics were given to help flush it out. They are trying to run his naso feeds with his IV fluid so that he will continue to put on weight. (The naso feeds usually get turned off while he is having chemo). Not sure how this will go considering he has already puffed up.

He had't had chemo for a while so his mood and energy levels have been through the roof. The girls and their mum didn't know what hit them over the last couple of days. Underneath his paleness and beanies is a very active boy!! Look out world when this is all over!!

The highlight of today was the opening of a children's playground at the hospital. It wasn't the playground that excited us but the fact that we were on tv. Ethan was on the channel 10 and 7 news. It was pretty weird seeing him on tele but bloody exciting! We also got to meet Andrew Gaze, which was pretty cool. He had a bit of a play with Ethan and we had our photo taken etc.

dodgy cvc line

The CVC line hadn't been in 24 hours before it occluded and had to be removed. The oncology team wanted a line that would last a couple of weeks, but because the anaesthetist inserted a CVC, which can cause a fair bit of scar tissue and possible problems with port insertions, I was pretty pissed off for a while! An IV was needed to continue the antibiotics. The ward doctor had a couple of goes before calling the greater skilled ICU doctor. She was successful on the first go. The antibiotics had to continue for one week. At this stage we weren't sure about chemo. We knew a peripheral IV wasn't appropriate for chemo but weren't sure what was going to happen. Were they going to try a PICC line again or wait for a new port, and if so, how does delaying chemo affect the overall treatment success?

We transferred back to Monash on Sunday night. We spoke with the oncology team Monday morning. The antibiotics needed to continue until Wednesday night and if Ethan remained afebrile we could go home for a couple of days before coming back into hospital for the insertion of a new port and some chemo. The highlight of the stay was getting the king size room, the one with a double bed and a fridge. There was plenty of room for Ethan to play with his trains and to swing a cat if he wanted!

His weight is still hovering. He was 10.8kg on discharge. It has been hard with him being acutely unwell and fasting for anesthetic. Hopefully we have been able to fatten him up before tomorrows anesthetic and chemo. He hasn't been eating much so I am not holding my breath.

septic shower

Yesterday I decided to take advantage of being home and take the kids to playgroup. They had a ball especially Ethan who hadn't seen a slide or that many activities for months. When we got home the carelink nurse was waiting. The antibiotic was given without any complications. Not long after the nurse left Ethan decided to pull out the nasogastric tube. I managed to get this back in with nurse Erin's help! After lunch Ethan appeared pretty tired which I thought was to be expected after the big morning. He was coughing a little more than normal while he was asleep which was concerning a friend, but thats just Ethan. Little did I know that the next time I was to check him he would have a heart rate of 190, respiratory rate of 65, temp of 40.5 and was pretty unresponsive. He was the flatest I had seen him for a long time. An ambulance was called and we were at Monash before we knew it. The oncology team knew we were on our way and met us there. It was thought that he had had a septic shower. Bacteria from the port was pushed through the port into the heart and lungs. They inserted an IV, took some blood, and commenced antibiotics and oxygen. We were then transferred to the kids.

The ICU doctors assessed him on admission and kept an eye on him overnight. Today he had an echo to rule out any heart involvement. A nervous wait but we were given the all clear. The doctors wanted the port out ASAP so he went to theatre at 1:30 today. The plan was to remove the port and insert a picc line. The anaesthetist explained that it wasn't as easy as it sounds and if he couldn't get it in they would put in a CVC (central venous catheter; an IV straight into the big vein in your neck). The latter was achieved. They tried for a PICC but couldn't thread it up his arm. The anaesthetist didn't want to prolong the anaesthetic, it is too risky with him being septic, so they opted for the quicker option and put in the cvc. Hopefully this will be efficient enough for the next round of chemo and any complications that may arise from it.

He recovered well and was back on the ward a couple of hours later. His temperatures have settled down with antibiotics. Not sure how long he will need these for or how long we will be at the kids or when the next chemo will be.

port infection

The blood in Ethan's wee lessened over the course of the week. His fluid levels remained high to flush the bladder, and by the end of the week we couldn't see any more blood. I don't think the surgical registrar was pleased with Ethan weeing on him, but it showed us everything was improving!

The IV antibiotics were continued via the peripheral line until Thursday. On Thursday, the doctors decided the port had to be accessed. The plan was to put antibiotics directly into the line to kill off more bugs. The port was accessed, bloods taken, and the antibiotic slowly injected over 30 mins. This went to plan, there was no septic shower and no need for the emergency drugs!

His oxygen levels remained borderline and with his nose being completely blocked I decided that oxygen via nasal prongs wouldn't be helping, so I took them off. The doctors agreed with this and his levels remained borderline without oxygen.

The only reason Ethan was still in hospital was for antibiotics. The doctors decided we could be discharged with carelink nurses. Carelink had other ideas though. They weren't taking new admissions for the weekend, they didn't have the funding, blah, blah, blah- but we have Claire, the oncology resident who stands her ground. We were discharged Friday evening with daily carelink nurses. The plan was to go back Tuesday for a few days of chemo (providing the port was responding to the antibiotics).

On Saturday, it was confirmed that the bloods taken from the port were still growing the infection. The plan was for more blood tests and a review on Tuesday.

We had our review today. It was confirmed the line is still infected. It will be removed on Friday. A semi permanent peripheral line will be inserted so chemo isn't delayed too much and then in a few weeks, another port will be inserted. An ultrasound was ordered to check the line. They weren't expecting to see anything, it was just routine, but as usual another hurdle! They found a clot. Not sure what this means and what impact it will have on the reinsertion of a port. I guess we will find out on Friday.

what else can go wrong

Ethan's last round of chemo was straight forward. Despite a bit of nausea and anorexia there were no major complications. The naso feeds were continuing so the feeding issues were under control. He was discharged on Sunday with the plan to be admitted Tuesday for day chemo. In the short time we were home he managed to vomit the tube out a couple of times. The main issue being weight loss.

He was admitted for day chemo as planned. He was given the thorough once over. He had lost a fair bit of weight so the nausea medication was increased.

The plan from here was to be home for a couple of weeks before the next round of chemo. Both girls had fevers and we knew Ethan would be next. On Wednesday he was still vomiting and was starting to look unwell. His bags were packed in case we had to do the midnight run but this didn't happen. He manage to have low grade temperatures at home until Friday before it was decided by the oncology team to take him back for a review. He was admitted with an upper respiratory infection and febrile neutropenia. His port was accessed and antibiotics commenced. His oxygen levels were 70% and oxygen was also started. On Saturday he started having diarrhea, the temperatures were getting worse, and his counts had dropped. A platelet and blood transfusion were given and his naso feeds changed to gastrolyte. His oxygen requirements were also getting higher. The nurses and doctors were keeping a close eye on him.

On Sunday morning his port site was looking a little redder. Nothing bad but enough to keep an eye on and add in another antibiotic. More blood tests were orderd. His platelets were even lower. By Sunday arvo he was looking pretty pale and lethargic. He was pretty uncomfortable when weeing and it was found he had a fair bit of blood in his wee. Another two units of platelets were ordered to try and stop the bleeding. He was pretty flat and had a fair bit going on; gastro, chest infection and he was weeing blood. What else could happen? Sunday night his port was very red and swollen. The port was disconnected and an IV was inserted (after several attempts an anaesthetist was called!). He was ordered more bloods and it was confirmed the whole port line was infected. They quickly arranged for a cardiac review to eliminate heart involvement. Luckily the heart and conduit show no signs of infection. The plan is to try and save the line rather than surgically remove it. If this can't be done they will need to replace it (two more anaesthetics). Even though they are trying to save it, they will a low threshold because of the risks of more cardiac surgery.