Updates

Since my last update Sam had been doing well. When we had an appointment with the Adelaide Cardiologist in March 2004 we had let him know that in the last 6 months we had noticed Sam’s energy levels had started to slow down. (He wanted to be carried a lot more or would go into the trolley at shopping)

When he returned to Adelaide he spoke with the other visiting Cardiologist to organise a Cardiac Catheter.

In April Dr Kilburn did an Echo, he said that Sam will more than likely need surgery within the next 6 – 12months. We were advised that he will go down for a catheter then return at a later date for surgery if it was required.

We found out in September that arrangements had been made for us to go to Melbourne in October. We were to have an appointment with a Cardiologist on the 13^th October 2004 and Cardiac Catheter on the 14^th.

Lots of things started to go through our heads. We had said that Sam and I would go down and when surgery was happening we all would go.

I started to get uneasy about going myself so we changed our mind and decided we would all go and have a little holiday as well.

So off to Melbourne we went. On arriving for his appointment and speaking with the Cardiologist, he was under the impression from the Adelaide Cardiologist that he was a “blue boy”. (Sam never really looked too blue, sometimes the tinge around his mouth got darker if he was cold or had an icy pole). He then said that he didn’t feel he needed to do a Catheter. (I felt since we had come down to Melbourne something could be done) He organised Sam to have an Exercise test. When he said he will need to walk on a treadmill for 6 minutes. (Andrew & I looked at each other and laughed, this boy will not go for that long) Well to our surprise he did. I think he thought it was a game.

Before Sam started his saturations were 82, they immediately dropped to 58 then went up to 63 and stayed at that level.

After it was finished the Cardiologist come out and spoke with us and stated that Sam had turned blue. (We didn’t notice him blue) He said the saturations showed this. So they would go ahead with the Catheter tomorrow.

So tomorrow came 14^th October 2004 (Thursday), and we went across to the hospital at 10.30am. Sam went down to theatre at 3.30pm. Sending Sam into theatre this time was hard. Andrew went through with him. It took 2 hours, which is a real long time when all you can do is sit and wait.

The outcome was not as good as the Cardiologist had thought it would be. They showed us some pictures which found Sam’s Left Pulmonary Artery was narrow; he had Collateral’s on the right side also. He advised us that his case would be presented to the Cardiac Conference on Monday to decide when Sam would have surgery. Sam & I stayed in hospital that night and were released about lunchtime on Friday. We went across to our accommodation. About 6pm Friday the Cardiologist called, Sam was going to surgery on Tuesday 19^th October. (We started to get worried as to why the sudden urgency of Sam’s surgery now as to his case not going to the conference.)

We decided that we would do a few things over the next couple of days before surgery. My brothers and father had come to Melbourne also so we went to the Museum and Melbourne Zoo. The kids had a great time, thankfully Andrew’s sister had lent us a stroller for Sam as he would not of been able to last and it would have been very hard on everyone carry him around for hours on end.

I had to arrange with work for longer time off. They were fantastic. They arranged everything and had made it the best deal for me.

The morning of the 19^th arrived; we were over at the hospital at 6.45am. The Anaesthetists arrived at 10am, down to theatre 10.30am. Boy it was so hard to send him into the room with them. Our boy was out of our hands. The surgeon had advised us it will take 6 – 8 hours. Andrew and I went across to our room and decided we would go to the Vic Markets with dad to make the time go by. We got back home at 2.30pm. Went for a walk and tried to keep our minds occupied. (Gee that can be so difficult).

At 6.30pm when we hadn’t heard I started to get very upset. (I had lots of thoughts going through my head, I needed to know something) We went across to the hospital and up to the cardiac ward; I burst into tears asking the lady if they had heard anything on my son. She called ICU to see if they had heard anything. Sam was just being wheeled thru. We were told to go back to the room and the surgeon would call us soon.

We got his phone call at 7.45pm, he said the Fontan part of the surgery had gone well, the Left Pulmonary Artery Repair was very delicate and took longer then they had expected. He said we could come and see him now. We took off down the emergency entrance, we got to the ICU doors and asked to be buzzed through, we were advised he was still getting set up to go into the waiting room. (What was going on), finally at 8.10pm we could go in and see him. What a huge relief that was. He was puffy and sleeping. We stayed with him until midnight then his nurse said as he was on Morphine he should sleep well, and told us to get some rest. If they needed us she would ring.


Morning after surgery	Allowed something first time

20th October - We were up and over to ICU at 5.45am, we had a good night. The ventilator was removed 9.30am, Sam was sent up to 7West at 6pm.

21^st October - Sam had a bit of a bad night, at 3.40am his blood pressure went up from 108 to 179, unsure why. (I thought we where headed back down to ICU). Thankfully we didn’t.

Sam had visitors from the Collingwood Football club come in to see him. (He kept asking them for a drink) fluid restrictions with the oxygen mask were rather difficult.

Warfarin started. Now the joys of INR test begin. Doctors would like his levels between 2 – 3.

23^rd October – Much to Sam’s disgust we got him up and out of bed for a walk. He wasn’t to keen when the Physio nurse came around.

Sam had his 4^th birthday in hospital. They nurses gave him an ice cream cake and they come down to sing for him, they gave him a small piece of his birthday cake with out putting it on his fluid chart.

Sam started to get temperatures so they did a chest x-ray, blood & urine test to see if anything showed up. Nothing did thankfully.

We got down to one drain. It had been in on it’s own for over a week it was draining around 40 – 50mls per 24 hour period and they wanted it down to about 35mls before they would take it out. All of a sudden the draining shot up to 120mls per 24 hour, the doctor’s rounds went from saying maybe tomorrow to patience. The 4^thNovember was a big day they lowered his fluids from 60% 691mls to 50% 576mls per 24 hour, they needed to change the dressing on the drains and noticed the drain had come out slightly so off to the treatment room to re stitch it.

11^th November - they decided he will have a Catheter on the 15^th. 12^th we needed to have an IV put in so they could stop Warfarin and start Heparin. That was a horrible day for him. The doctor tried 6 times to get one in but his veins were all shot. They called an Anaesthetist who tried again in one arm then eventually got it in his foot. She didn’t know if it would last but it was in for now. (2 hours later we got out of the treatment room)

14^th November - at about 8pm they were saying the IV was red and bruised and not sure if it would last through to 5am when they could turn it off. Yay it did.

15^th November - he went down for a Catheter at 10.30am. We spoke with Professor Menaham at 11.30. Pressures were a little high. He went through to recovery at 12.30pm, then up to 7West at 1pm.

17^th November - Sam was having a good day. He had the IV in his foot taken out yesterday and was happy to get up again and walk around a little. Everything was going well. Dinner time came and Sam was being himself and not eating. I pulled him up a little and Andrew had said that the drain had hurt him before. Andrew had gone over to cook our dinner and Sam finished his dinner off. He started screaming saying his back was sore. His nurse pulled down the sheets to straight him out. We discovered his drain stitch outside the dressing; she took a peep under the dressing and found the drain was out. A Cardiologist was on the ward and came down to see him, he advised to clean it out, make sure nothing was left in and put a dressing back over it. The nurse was doing it rather quickly. A chest x-ray was ordered. I rang Andrew to let him know. He had dinner come across then I went to have dinner. By the time I got back the x-ray was done and they found around his right lung had filled with air. He needed to go back to theatre to have another drain put in to release the air before his lung collapses. Because he had eaten we needed to wait for 5 hours before they could do it.

12am down to theatre. The procedure took 45minutes. Before we left recovery they did another x-ray. The air had gone and the lung fully expanded. The new drain was put in under his right arm (very awkward position).

19^th November - the new drain had not drained anything since it was put in so at 7pm they decided to remove it. (I was feeling nervous about it, is it too early, will he need another one).

20^th November – we have a new little boy. No drains and wanting to follow his nurse everywhere, so hard to keep in bed now. Chest x-ray, clear and no fluid or air build up. They to put his fluids up to 60% = 691mls per 24 hour. They do take into account the fluid going through the IV so he is allowed 643mls.

22^nd November – Since having his surgery Sam has lost a kilo so now we have to concentrate on getting his weight back on (as long as it is weight and not fluid build up) Doctors rounds they were happy and allowed us to take him out to accommodation. They changed his drain dressing, took the IV out told us to come back on Wednesday for chest x-ray and INR. Left the hospital at 1.20pm

26^th November – appointment with Professor Menaham, ECG & Echo. Started him on Lisinopril tablets for his blood pressure. We made an appointment for a Catheter in March to check his Left Pulmonary Artery, fluids up to 70%, and said we are able to go home.

Because the INR level was high we needed to have it done again on 27^th November. This time it was 3.0.

31^st November – Meeting with Fiona the Warfarin nurse to go over the medication and for us to ask questions. Very helpful. Then have another INR test.

1st December – We fly out today. Leave Melbourne at 4.45pm. We flew to Adelaide and had a 1.5hr stop over which was good as my brother Ashley and girlfriend Simone come to the airport.

When we got home I went through the mail and found we had an appointment tomorrow with Dr Kilburn, put his fluids up to 80%.

Over the next week we found the Fluid restrictions very hard with the weather being so much hotter up here so on our next appointment on the 9^th December Dr Kilburn said to try free fluids.

The diuretics were stopped on 30^th December so we watched to make sure he wasn’t going to start retaining fluid.

27^th January 2005 – my big boy started pre-school. He has been waiting for this day for a long time and he had a ball. The teachers were frightened; we have had a meeting with them and a nurse and have done a plan if something were to happen.