Wednesday 18th March
We decided to give mum the day off on Wednesday, so Oliver and I headed in to PMH to hang out with the nurses and have his treatment. After a quick visit to the local cafe for breakfast and a coffee, we made our way into reception and booked into Rm 15. Dr Pavla came in to see us, then just as we were about to tuck in to some lunch, it was time to get needled for treatment. That's when it went pear shaped. Oliver's port wouldn't bleed back, and when they tried to push a little saline in, it began to swell on his neck - not good. It meant that something was leaking. After a quick x-ray, it was found that the catheter had come out of Oliver's vein. First, I had to call Karli to let her know what was happening. Last time I had brought Oliver in by myself he left with a cast on his arm, so I was feeling a little bit of a jinx. After that deed was done, it was time to wait. We went for an ultrasound of his neck so they could have a view of his veins, but it wasn't terribly successful. He was none to keen on laying still and quiet while they tried to get a picture. Since he hadn't yet eaten, he was able to head into the operating theater at 6.
The plan was to take out the offending port and replace it with a new one. The surgeon wasn't too keen on placing the new one back where the old one was, on the right, so she was going to place it on the left. I wasn't keen on this idea. The left side was where Oliver's original port was placed and then subsequently removed when it also stopped bleeding back. It had originally been placed there because at the time his lymph nodes were so swollen that they prevented the surgeon from placing it on the right. It was difficult for him getting it in on the left.
I took my little boy into the theater and held his hand and kissed him goodnight. It was obvious he is much stronger now because it took a long time for the gas to send him to sleep, longer than I have had to endure before. Karli, who had arrived at the hotel by 3.30, and I then headed to the Friendship Room to comfort each other and wait out the hour and a half for the procedure to be finished. As the time came and went, we were both fighting off the nerves. His first procedure took four hours, and so we knew things weren't going to plan. At 8.45 we went to wait in the corridor, as the Friendship Room closes at 9. The surgeon soon came out and gave us an update. Firstly, it was too difficult to get the catheter into his little veins, so they hadn't. It had proven very difficult to get an IV line in too, and so they had eventually managed to get one into his femoral artery at the top of his leg. He was now in the recovery room, waiting for the anaesthetic to wear off. Only one parent can head into the recovery area and mum is always the best option. I sat out in the hallway waiting for them to come through the doors so we could head downstairs. I wasn't quite sure what to expect. The wrist and ankle are splinted when they place an IV canula in those positions. Did that mean he would be immobilised at his hips? That wouldn't be much fun at all. Well, he didn't need immobilising and we were soon back on the ward. We did have to do a quick return trip to x-ray for some reason that I am yet to ask about, but we were soon downstairs and tucking our little man into his cot as best we could.
I sent Karli home for the night so that she could have a good nights sleep. Unlike our first stay, we didn't have a bed in the room, only a recliner rocker, and I knew that Karli would not sleep well in it. She needed a good sleep to be able to make it through the next day looking after Oliver while I was at work. So Karli left and I tucked up on the chair.
Thursday 19th March
Oliver soon woke up, very hungry, so we had something to eat and had a little play before he was ready to settle down again. He woke up again 45 minutes later looking for some more food and play, then again at 5.30, looking to start the day. In the end, I got a couple of hours sleep. I was glad I had organised to get in to work early and finish up earlier too.
Karli sent me a message during the day to let me know that Oliver had received his treatment that he had missed the day before. I rang a bit later and Karli was talking to Dr Angela, Oliver's consultant. She let me know that we would be staying the night so they could scan him again on Friday while they still had a line into him. I was glad to have Dr Angela back. She had been away and we hadn't seen her for a couple of weeks. Whilst I know that the doctors are all qualified etc., I was so very relieved to have Dr Angela talking to Karli and aware of what was happening with our little boy. It wasn't that I didn't trust anyone else, but Dr Angela knows Oliver and his case. I headed in to hospital as soon as I finished work, before heading off for a quick moment at home, then heading back in for the night to relieve mum. I cleared my day for Friday so I could stay at the hospital.
Friday 20th March
I managed to get a bit more sleep, but was glad to be able to slink off for a coffee when Karli arrived in the morning. Oliver was due another ultrasound today, the same one as before, but this time with sedation. We went along with it up until the point that they gave him the chloral, that's when we remembered his last chloral episode - the one where he just got happy drunk instead of quiet and sedated. Needless to say, the ultrasound didn't go to well. We headed back down to the hotel room and he had taken his first bite of a rusk when I thought - what if they want to operate, he had already fasted for the sedation, but if he ate now he wouldn't be able to have a general anaesthetic for another 6 hours. Me and my big mouth! We wrestled his rusk away from him, of which he was none too pleased, because he was going to have a CT scan under a GA as a result of the poor ultrasound. It is surprisingly easy to keep him otherwise occupied, and by 8 that night he had had his CT scan and was freed from his canula. This would be the first night we would spend in hospital without him hooked up to something. A hearty dinner and he was off to sleep for the night.
Saturday 21st March
A quick visit from Dr Angela to let us know what was happening and we were off. Home before 11am, and getting ready for a visit from my mum, brother, and aunt and uncle. Oliver got his first bath for a few days and we discovered how many places they had tried to get a line into him. As well as the pin cushion effect on his hands and ankles, there were tell tale marks on his shoulders and shoulder blades also- the needles leave a fairly obvious mark.
So we are waiting to find out when Oliver is scheduled for his next visit to the OT. The CT showed that the left hand side is "stuffed" (Dr Angela's words) as far as getting a catheter in is concerned, but the right hand side is fine - that was OK with me. So before his next treatment we will be heading in to have another port inserted on Oliver's right hand side. Hopefully we will find out about that soon so that we can organise a trip down to Albany to visit friends and just have a bit of time off to relax and let Oliver spend time with his Oma.
Here are some video's of our little boy. The first two are in the hospital playroom. Our little man loves his music, and we are very impressed that he is able to stand by himself, if only for a small period of time. The last one is of his first stumbling steps. Our little boy is growing up big and strong.
