Sunday, December 7, 2008

Surgery Did Not Go Smoothly

I am writing this several days after P's mediport removal surgery so I've had some time to recover. He's had some time to recover too (which is obviously more important) and he is fine.

This was the last big thing to end his treatment for ALL (Acute Lymphoblastic Leukemia). The mediport had done a great job delivering medicine and providing an easy access for all his blood tests. It had never been infected or caused any complications. It had done its work well but treatment was over and its work was done. P had been talking about how he wanted to keep it for months. The surgeon wasn't sure we could keep it but he would try and get it back from pathology for us. I made it clear that he wasn't going to stop asking until he got it back.

Our pre-op appointment had been quick and I was led to believe that the surgery would be very simple and routine and we could expect that Patrick would walk out after surgery and be back to full strength within hours. I think that it almost always does go very smoothly.

We arrived for surgery on time and answered all the usual questions, he changed into a hospital gown, I signed releases and more releases, he watched some Diego, he took some medicine to relax (I don't think he needed it since he is a model patient) and he was wheeled into the OR. I stayed with him until he fell asleep and then I left him on that little table surrounded by people (6) and machines. The surgery was supposed to take 1 hour. After 45 minutes the surgeon (Dr. Ginsburg) came out and said "there is a complication"....big gulp from me..."the catheter (a piece of tubing) from the port is stuck. We are going to try some things but this has never happened before." I said "I guess you are going to learn something new today". Dr. Ginsburg says "I hope so". He goes back in and I'm left reeling in the waiting room alone. I thought about calling Mark or Dad (who was taking care of K and M) but decided there was nothing they could do and they would just worry. Dr. Ginsburg did assure me several times that he was fine but anything surgical having a "complication" is not good in my opinion.

Forty-five VERY LONG minutes go by and Dr. Ginsburg comes back. They have not been successful and are taking him to the second floor. The plan is for the interventional radiology team to x-ray and go in a different way to retrieve the stuck catheter. I rode in the elevator with the doctors, nurses and my beautiful 5-year old son. He was now intubated and they had taped his eyelids shut. This is not a sight that any parent needs to see. It is very, very hard to see your child looking so lifeless.

I am led to another waiting room and am soon met by a doctor from the interventional team. This doctor is reassuring and says that they have dealt with problems like this many times but it happens more frequently with adults. I start to breathe again a little. They plan to x-ray and then either make in incision in his neck or groin and thread something up to his chest to retrieve the catheter. I sign more releases. More waiting and another hour or so later Dr. Ginsburg returns with the catheter in his hand. P is fine and going to recovery momentarily. They had made the incision in his groin and pulled the catheter out that way. It had calcified tissue around it. A routine 1-hour surgery had become a 3+ hour surgery. He had two points of incision and two IVs.

My tough little guy was pretty uncomfortable when he woke up. He never complains so I knew that he really felt bad. The tube in his throat had caused alot of irritation and he coughed and coughed and had trouble talking. He was sore and he had to keep his leg flat for four hours. He was even mad that they had taken his underwear off. He did ask to see the mediport within a few minutes of waking up though and I was glad that I had been persistent and gotten it! Mark came and we were able to go home at about 6:30 that night.

He can't run or shower for a few more days but he seems about 90% back to himself.

P's leukemia treatment has been blessedly "complication" free (until this last thing) and he has been in remission now for 3 years and two months. Yay!

The pics show him before surgery (you can see the mediport under his skin), the catheter that was stuck, and him holding the mediport after surgery.


MemaSteffi said...

Your special boy and you are amazing troopers. Congratulations on reaching another milestone. You are both medical experts by now.

myhiplife66 said...

A friend's son went through almost the exact same thing last week as what you describe. His port was attached to a major vein of the heart and they couldn't detach it (they removed it the same as your son). My 7 yo son is having his port removed thursday so I did a google search to see how common these complications are and your site came up. He is also finishing 3.2 yrs of chemo for ALL. Just wanted to introduce myself. Best wishes to you all. I personally know how hard it is, but I only have 2 kids and I do own a minivan! You must be a very strong mom.