This post is going to be quite long and will go into a lot of detail. Its a record of yesterday's events and was written over the course of the day. You can skip this one if you like as we've also done a much simpler update about how Rhys has gotten on with the latest on him.
10:00am
This morning has been challenging so far.
So that Rhys could have breakfast before coming into hospital (toast and hot chocolate) we were up at 6am, despite Rhys trying to catch a couple of extra hours sleep by putting the clock back 2 hours.
Breakfast was done and dusted by 6:30 and then it was time for a quick game of pool with Mum.
We'd been told to ring the hospital before we set off to confirm that there was a bed on Ward 35 for him. The first phone call resulted in us being told that there wasn't a bed on Ward 35 but that they were going to try and get Rhys onto Ward 36. However, we would have to ring back at 7:30 as the staff on Ward 36 that could confirm that a bed was available wouldn't have started their shift.
7:30 and we rung again. After two phone calls and twenty minutes on the phone we found out that Rhys had a bed on Ward 37, the renal ward.
Arriving on the ward Rhys was put into the care of a bubbly, young nurse.
So now we wait for all of the doctors that need to come see him before surgery to arrive.
We have been told that Rhys will be going to PICU (the intensive care unit) after surgery and not onto a ward. From what we've experienced with getting a bed this morning its probably the only place that has a bed available.
This morning has been challenging so far.
So that Rhys could have breakfast before coming into hospital (toast and hot chocolate) we were up at 6am, despite Rhys trying to catch a couple of extra hours sleep by putting the clock back 2 hours.
Breakfast was done and dusted by 6:30 and then it was time for a quick game of pool with Mum.
We'd been told to ring the hospital before we set off to confirm that there was a bed on Ward 35 for him. The first phone call resulted in us being told that there wasn't a bed on Ward 35 but that they were going to try and get Rhys onto Ward 36. However, we would have to ring back at 7:30 as the staff on Ward 36 that could confirm that a bed was available wouldn't have started their shift.
7:30 and we rung again. After two phone calls and twenty minutes on the phone we found out that Rhys had a bed on Ward 37, the renal ward.
Arriving on the ward Rhys was put into the care of a bubbly, young nurse.
So now we wait for all of the doctors that need to come see him before surgery to arrive.
We have been told that Rhys will be going to PICU (the intensive care unit) after surgery and not onto a ward. From what we've experienced with getting a bed this morning its probably the only place that has a bed available.
1:35pm
Surgeon and anesthetist have been to see us. I missed the chat with the surgeon but was there for the latter.
I almost passed out when the anesthetist was talking to us. Rhys and Tracey were fine during all the medical discussions.
Rhys is definitely going to ICU as they may decide to keep him unconscious overnight or for a few days. He is going to have quite a few tubes in and it looks like he will be having an epidural to help with pain relief.
We'll be seeing the surgeon after the operation which may take 4 hours or could be 6, in the words of the surgeon it will take as long as it takes.The rest of today is going to be one of the most anxious and stressful we've experienced since Rhys was first diagnosed with Leukaemia.
Surgeon and anesthetist have been to see us. I missed the chat with the surgeon but was there for the latter.
I almost passed out when the anesthetist was talking to us. Rhys and Tracey were fine during all the medical discussions.
Rhys is definitely going to ICU as they may decide to keep him unconscious overnight or for a few days. He is going to have quite a few tubes in and it looks like he will be having an epidural to help with pain relief.
We'll be seeing the surgeon after the operation which may take 4 hours or could be 6, in the words of the surgeon it will take as long as it takes.The rest of today is going to be one of the most anxious and stressful we've experienced since Rhys was first diagnosed with Leukaemia.
3:00pm
Rhys went down for surgery around 2:30.
There's not much space in the room that they take you into in order to put you under so Rhys' had to choose who he wanted to go in with him, he chose Mum.
Being the seasoned pro he his when it comes to operations he let them put in a canula in the back of one hand, attach the temperature sensor to a finger on the other hand but when asked if he wanted to hold the oxygen mask over his mouth said that they could do that.
Leaving him in the hospitals capable hands we've gone out to get something to eat before heading up to CLIC House for a couple of hours to charge up phones before returning to the hospital.
The hospital have our mobile numbers to keep us updated. So far we've had one call from the surgeon to tell us that now Rhys' unconscious his stomach muscles have relaxed and they can feel the tumour better, so they have changed the incision that they are going to use from a midline one to one that goes underneath the ribcage. The surgeon wanted to let us know of the change of plans so that we wouldn't be surprised when we see him in ICU.
Rhys went down for surgery around 2:30.
There's not much space in the room that they take you into in order to put you under so Rhys' had to choose who he wanted to go in with him, he chose Mum.
Being the seasoned pro he his when it comes to operations he let them put in a canula in the back of one hand, attach the temperature sensor to a finger on the other hand but when asked if he wanted to hold the oxygen mask over his mouth said that they could do that.
Leaving him in the hospitals capable hands we've gone out to get something to eat before heading up to CLIC House for a couple of hours to charge up phones before returning to the hospital.
The hospital have our mobile numbers to keep us updated. So far we've had one call from the surgeon to tell us that now Rhys' unconscious his stomach muscles have relaxed and they can feel the tumour better, so they have changed the incision that they are going to use from a midline one to one that goes underneath the ribcage. The surgeon wanted to let us know of the change of plans so that we wouldn't be surprised when we see him in ICU.
8:30pm
Still waiting for Rhys to come up from the operation. We're sat in the parents room on ICU.
The operation was going well but they were going carefully. We'd been wondering what was going on so rang ward 37. As a result the anesthetist rang us back to let us know what was happening.
Not much that we can do at the moment but just wait. Its been 6 hours since we saw Rhys off for surgery. We'd been warned the operation would take as long as it takes but it still leaves you frustrated and a little anxious.
Still waiting for Rhys to come up from the operation. We're sat in the parents room on ICU.
The operation was going well but they were going carefully. We'd been wondering what was going on so rang ward 37. As a result the anesthetist rang us back to let us know what was happening.
Not much that we can do at the moment but just wait. Its been 6 hours since we saw Rhys off for surgery. We'd been warned the operation would take as long as it takes but it still leaves you frustrated and a little anxious.
11:15pm
Have spoken with the surgeon. Rhys will be coming up from theatre shortly and after they have got him settled in we'll be able to see him.
The operation has been successful. Mr Rodgers managed to remove the whole tumour, something that might not have happened if it had been another surgeon. Thankfully we had the best.
Its not been an easy operation. The tumour was huge, think of a Galia melon and you'll have an idea of how big. It was very close to the spine and some of the major arteries in the body. Getting to it to remove it was also tricky. At one point Rhys' blood pressure dropped to 40 but a transfusion of 3 units of blood helped to remedy that.
Rhys almost had to have one of his kidneys removed but thankfully they were able to avoid that so he still has two.
Its been a long and stressful day for us but without a doubt even more so for Mr Rodgers and his team.
Words cannot express how relieved we are for what they have done.
Have spoken with the surgeon. Rhys will be coming up from theatre shortly and after they have got him settled in we'll be able to see him.
The operation has been successful. Mr Rodgers managed to remove the whole tumour, something that might not have happened if it had been another surgeon. Thankfully we had the best.
Its not been an easy operation. The tumour was huge, think of a Galia melon and you'll have an idea of how big. It was very close to the spine and some of the major arteries in the body. Getting to it to remove it was also tricky. At one point Rhys' blood pressure dropped to 40 but a transfusion of 3 units of blood helped to remedy that.
Rhys almost had to have one of his kidneys removed but thankfully they were able to avoid that so he still has two.
Its been a long and stressful day for us but without a doubt even more so for Mr Rodgers and his team.
Words cannot express how relieved we are for what they have done.
Rhys is far from out of the woods, there are still things that could complicate his recovery, but we can just about see the treeline.
And so with that its time to bring what has been the longest day ever for all of us.
Tuesday 8am
Rhys had a restful night, he slept on and off.
We were eventually able to see him in ICU at about 12:30 this morning. He was conscious and able to recognise us. He was also able to speak a little. He has a feeding tube in his nostril, other tubes and monitors are connect to other parts of his body,. He was aware that they had been going to remove his kidney. Not sure how he knows. We were able to reassure him that the tumour has been removed.
After everything he and we have been through over the years seeing him in ICU like that was probably the hardest thing we've gone through.
After yesterday, I know that if I ever find myself having a crisis of faith then I simply have to look at Rhys to know that there is a God, or higher being - whatever people's own faith dictates, and that prayers do get answered.
Rhys had a restful night, he slept on and off.
We were eventually able to see him in ICU at about 12:30 this morning. He was conscious and able to recognise us. He was also able to speak a little. He has a feeding tube in his nostril, other tubes and monitors are connect to other parts of his body,. He was aware that they had been going to remove his kidney. Not sure how he knows. We were able to reassure him that the tumour has been removed.
After everything he and we have been through over the years seeing him in ICU like that was probably the hardest thing we've gone through.
After yesterday, I know that if I ever find myself having a crisis of faith then I simply have to look at Rhys to know that there is a God, or higher being - whatever people's own faith dictates, and that prayers do get answered.
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