After the surgery

I am totally amazed! I have not been phased out at all! I took everything in stride today – almost to the point of being professional about it! Around 11:45 am we were finally allowed to see Jonathan. He was in the recovery room. About 30 minutes before we met with the (main) surgeon and he gave us a run down of how the operation went. He said that the surgery went perfect - and included the thumbs up sign (smile). He said that there wasn’t any blood lose, i.e. no excessive bleeding, etc… and that they removed all the tumor. They removed one of his adrenal glands and the liver and kidney were fine (not invaded by tumor). They also removed some infected lymph nodes but left some calcified lymph nodes that were around the aorta (main blood vessels).

When we went in to see Jonathan and I noticed he was sleeping – my first reaction was to see what was done to my little boy’s body. I raised up the sheet / blanket that was covering him and there I saw an incision that started from the middle of his stomach and went to the right of his stomach all the way to his side and then up his side to just below his armpit. There was also a tube coming out of his chest – I would estimate about ¼” in size.

Later on, when I was asking my ‘million and one questions’ I found out that the surgical team also had to crack two of Jonathan’s ribs. The thing that pissed me off about the fact that they had to crack two of his ribs was that I had to ask that question! No one came out and told me that this was a consequence of the operation. The more I think about it – the more I’m starting to suspect that it wasn’t necessary or something (maybe the readers of this blog with a medical background could e-mail me on their thoughts about this part of the operation)?

I probably spent the first hour trying to convince the pain management team that the dosage of pain medicine was too low. It got to the point where the conversation was getting animated (I was still being polite) and I finally decided to rest my case. I’ve come to realize it makes no sense arguing with nurses and some medical staff because they feel (some) parents don’t have a clue about what they are talking about. I even suggested to the pain management team to pull up his old charts and verify the information and assumptions I was making – but I think records management went too slowly and brought up the wrong records in the end.

So, 10 hours later, and Jonathan’s pain medicine is very close to the levels I was suggesting all along for them to use! What can I say! Maybe I should be a doctor (smile)! I think I prefer to be an engineer – I don’t think I can manage having to deal with all those parents and their issues. In my field – I have alternative methods for not interacting with a customer that I may not have as a doctor (smile).

So the plan is for Jonathan to heal. He wakes up every hour or so and whimpers about being in pain – and I push a button that gives him an extra dose of pain medicine. He also gets a constant supply of pain medicine but there is a button connected to the machine in case he needs more. I must say that his pain management is under much better control now and I’m more relaxed. I’m really glad that his surgery went without any complications and I’m all geared towards Jonathan healing and getting better. I look forward to meeting our primary oncologist later in the week – where I’ll have a million more questions to ask – because if I didn’t have a million questions – my name wouldn’t be Walter Seepersad!

The Day of the Surgery

The day of Jonathan’s surgery has finally arrived. I’ve been wishing for quite a while that we can fast forward time and just speed up the remaining events – but no such luck – I have to wait and go though each event in its own sweat time. Yesterday, Gabby got a call from the surgery department that Jonathan’s surgery was moved up. Instead of surgery starting at 9 am, it was moved up to 7:30 am. This meant that we had to get into the hospital at 6 am to check-in and do the admitting paperwork. And here I was thinking that I’ll get to sleep in a bit longer as I took the day off from work!

We got up at 5 am this morning – which, incidentally is the normal time I wake up during the week. In true Trini style – we did not end leaving home until 6 am and arrived into the hospital at 6:30 am! Of course, as I suspected, our late arrival didn’t affect anything because with admitting the paperwork doesn’t actually take long. While I was waiting in admitting, Gabby took Jonathan to PACU so they can start examining Jonathan and preparing for surgery. Jonathan was so sleepy that although he woke up when we took him to the car, he fell asleep and stayed sleeping all the way to PACU.

He eventually woke up in PACU – because he had to take off his clothes and put on the hospital clothes / gown – but the anestheslogist gave him a little sedative to calm him down. For some reason I wanted to document everything so I took plenty of pictures and had the video camera rolling. The nurses were kidding around that Jonathan had the Paparazzi following him around – especially when he was being rolled into the operating room – both Gabby and I had a camera each and were taking a lot pictures.

I think the biggest concern this morning was Jonathan’s labs. I had taken Jonathan to the clinic yesterday afternoon since Gabby’s eye started to get pink / red and she wasn’t sure whether it was due to pink eye (red eye for the Trinidadian people) or whether it was allergy related. Apparently his white blood count and hemoglobin levels were low but his platelets were above the (normal) minimum – so at least he wouldn’t bleed easily. I’m not sure what the risks were but the surgeon didn’t seem concern about it and a part of me was glad that his surgery wasn’t going to be put off. My thoughts processes at the time were that if his counts didn’t put him at risk then let’s do it because we’ve been waiting so long.

So it’s 10:32 AM and we were paged to come back to the PACU waiting room. Apparently Jonathan’s surgery is done (or so we hope) and we are waiting to see the surgeon. Under normal circumstances – I would be at the nurses window asking every 5 minutes – “is he out?” or “when can we go in to see him?” but this time I’m chilling out and writing a journal entry.

Trip to Yosemite

Last week Monday we went to Yosemite - on Memorial Day weekend. It was a blast! I was trying to take a lot of pictures and the kids - being kids - just wouldn't be still while I'm taking pictures! Here you see Jonathan making 'monkey' faces while I shot off some pictures of him against the cliffs of Yosemite. Later that day we went up to Glacial Point and the kids got a chance to play in some snow! It was a really good day - really helped to life Jonathan's spirits!

Finally got Gabby to take a picture of me with the kids (smile)! Don't happen too often because I'm usually the one taking the pictures.

Preparing for Surgery

On Wednesday we had a consult with the surgeon!  Apparently the results from the CT scan taken over a week ago shows that the primary tumor is still there!  My hope - since March - was that his primary tumor would have shrunk enough / completely so that he didn't need surgery but I guess my expectation was set to high!  Although that has been my wish for a while, when I heard the news I was not devastated that the expectation did not come to pass.  I guess a part of me thought that I was hoping to much and I just left everything up to the powers that be!  If it was meant to happen it will happen - which apparently it did not!

The current plan is for Jonathan to have surgery on Tuesday (7th June).  Since the tumor is small - about 3.6 cm x 1.9 cm - his operation would only last about two hours - provided that there are no complications.  I remember the surgeon telling us that he has operated on a kid whose primary tumor was so large, that the operation took 23 hours!  I don't know how they do it - but I'm glad I'm an engineer and not a doctor!

As we get nearer and nearer to the surgery date, I can see Gabby getting more and more stressed out.  For me, I'm also worried but I guess with all my other activities, e.g. work, it's a bit easier to compartmentalize and not focus too many brain processes on worrying about the surgery.  Our meeting with our therapist on Saturday was helpful and we have a (potential) new plan of action that may help Gabby deal with the stress a bit better.  I think Jonathan is a bit worried about Tuesday as well.  Gabby has explained (somewhat) that he will be going into the hospital on Tuesday and that they are going to take out the 'lumps' - I'm not sure what is the exact word she used.  When she told him he got sad.  I tried to have a conversation about it with him last night but he didn't want to talk about it.  He decided to play a game on interrupting me whenever I started to talk - and plus he was having a good time last night so I decided to drop it.

It's unfortunate he has to go through the surgery.  Because of the amount of pain he might experience, he will get an epidural that will be put in his back (not on his spine) to help with delivering the pain medications more locally to the surgery area.  After the surgery he will also have a tube coming out of his stomach to help with letting out air and some other stuff (I cannot even remember).  I guess after the surgery I'll know more about it.  My only worry is that after the surgery, Jonathan may have to go to ICU and the problem with that is if he is sleeping, we wouldn't be able to stay at his bed side.  If that happens this will be the first time he'll be in the hospital by himself for any extended period of time.  Of course we will still be in the hospital but just not at his side - but I'm hopeful - and so is the surgeon - that Jonathan will not have to go to ICU.

Moving on to good news - I spoke to Jonathan's primary doctor on Friday afternoon.  The results from his bone marrow aspirate came back negative.  His bone marrow is now clear of cancer cells!  They still have to wait on the results from a more sensitive test but at least microscopically he is clear of cancer in his bone marrow.  This is excellent news and it confirms that Jonathan is moving in the right direction - but for some reason I wasn't ecstatic about the news.  A friend of mine was saying I must be very happy with the news - but for some reason I see this more as a step in the right direction and one less thing to worry about - instead of being overly joyful about the news.  I guess once his active therapy is done - then I'll celebrate!