It's 4:30 am on Tuesday 25th January and I'm in the hospital with Jonathan. I forgot what it is like being in a hospital ... at least compared to my two experiences for the births of Jonathan and Arielle. Jonathan and I are in a shared suite - which means we are sharing the room with one other patient - one other family. It's a big room with curtains to section off each area and each area has its own TV, phone, sofa and equipment but we share the same bathroom. As I write this - I hear the next patient crying - a baby - but unfortunately the parents do not stay behind. I don't know the reason why and I don't hold anything against them but I'm just happy to be able to stay with my son. Gabby and I are hoping that one of us could always be with him - both in the day and the night. We don't want him to spend a moment at the hospital by himself.
I've just put on a movie for him - Stuart Little 2 - to try and keep his mind off of things. Jonathan is watching it and shaking his right leg constantly. I don't know why he does it - but his right arm is always up over his head tucked under the pillow. They had just given him his pain medication - morphine - and he seems nice and settled - although a bit stressed.
The previous day's events were interesting. Jonathan went in for surgery - for his two biopsies around 1:30 pm. His first biopsy was to remove a small piece of the tumor and that 'operation' lasted around 2 1/2 hours. Fortunately they didn't have to cut but used laparoscopy, that is, using a camera and other tools to get to the tumor. This means that Jonathan now has three or four small holes in his body - one by his belly button and two or three other holes distributed on his stomach area. His second biopsy was to remove some bone marrow and piece of the bone and that was done on either side of his hip - so again he has two small holes on either side of him as well. He also has a main line installed - so he has a hole just above his right 'nipple' and is a type of (permanent) IV line that connects directly to one of his main veins. This means he shouldn't not have to get 'stick' as regularly as before since they now have a way to inject medicine and administered treatment.
It was strange seeing Jonathan after the operation. He finished just after 5 pm and was still sleeping when we went in. He looked so stressed - the markings from the tape or masks they put over his face to help him breathe were still present when we went in. I was so happy to hear that he went through the surgery with no problems but it was difficult to know my son is going through so much pain ... and the difficult thing is that things have now started ... I shudder to think about his other ... more serious procedures.
Jonathan was moved up from same day surgery recover room to his more (permanent) room between 6:30 pm and 7:30 pm. I could clearly see that he was in some pain a little later and they administered a dose of morphine around 8 pm. Around 9 pm his pains started back - primarily by his throat and his 'wee wee' since tubes were inserted in both places. While attempting to help ease his pain - he got in more pain - I have no idea why - and I started to panic. I kept paging our nurse and no nurse was coming and for those that know me ... I started to get anxious (for want of a better word). Fortunately a nurse came about 15 minutes later and he got another does of morphine. Coincidental, our surgeon arrived, and we had a discussion around pain management and my pleading that they stay on top of things.
Of course they were staying on top of things - but you know how parents could be - or at least this father - I wanted my son to be as comfortable as he could be - but after hearing the side effects of morphine - I was a bit more calm. The good thing so far is that the length of time between doses for the morphine is gradually increasing - from 1 hour, to three hours to four hours ... at least that is a bit of a relief. I just wished he could get more sleep - I know he has hardly gotten any / much sleep - much less for me - but I know the way for him to heal is to sleep and allow his body to rest.
At least I have access to the internet from the hospital - using my dial-up account and I'm hoping to start getting some research done on cancer, Neuroblastoma and treatments available. It's great to hear from all my friends and family ... the show of support. I now have to start worrying about the future ... his treatment ... how I can be there for him ... and how to manage my job and time off. For those of you praying for Jonathan and for us ... pray that there is a good resolution for me as well so I can continue to be there for my son.
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