Today I have laser-death eyes. Tragically, everyone who works in the IGT department of the hospital died as a result. It wasn’t their fault, they just happened to be in the wrong place at the wrong time.
I got pushed to my limit today and almost starting throwing punches, but I restrained myself… barely.
We knew that we were headed into surgery today, just not when. The unpredictability of hospital life is one of the things that is driving me mental. I met the docs on rounds at 7:30, and we agreed that Gavin was going to go into surgery at around 10:00. Okay, fine. Any questions? Nope. So you can imagine my surprise when ten minutes later our nurse comes in to take me down to the OR. Craig had just left to try to put in a couple of hours at work and then had to turn right around and come back to the hospital.
Gavin was still waking up, and quite sleepy due to the building pressure in his ventricles. (His drain had been turned off to prepare for the surgery.) He was not pleased to be woken up in the OR waiting area with a group of strangers crowded around his bed. I tried to placate him with stickers while I fielded questions from the anesthesia group in preparation for surgery. I had to part ways with Gavin as they wheeled him into the OR with only Monkey for company. Heart-break #1 of the day.
Then I wandered off to the CCU waiting room to find Craig. My dad joined us there a short time later and we all spent the next hour and a half reading and anxiously clock-watching. I’m reading the Twilight series for comic relief. Finally, Dr. Dirks came to tell us that Operation Shunt was a success and that Gavin would soon be in the recovery room. I felt my fever-pitch anxiety slowly begin to fade again.
In the recovery room, Gavin woke up straight away, still groggy but alright and was soon back in his room, ready to watch TV and play stickers again. Auntie Loz kept him occupied for an hour while I snoozed a bit. She had just left when a woman from IGT (Image Guided Therapy) arrived to tell me that we had a problem with Gavin’s PICC line.
Gavin’s PICC was inserted 10 days ago, really without my blessing. I expressed my objections to anyone who would listen, but was convinced that it was an absolutely necessary procedure that would save him a lot of trouble in the long run. A PICC is like a permanent IV that is fed from the arm up into the chest, not exactly an easy or completely safe procedure, although they do them all the time. The rationale behind the decision was that it would save Gavin from a lot of “pokes” because he would need daily bloodwork to check his heparin levels. So I was slightly irritated to learn that the heparin samples could not be taken from the PICC after all and so Gavin would still receive pokes daily or twice daily. To my mind, the PICC hasn’t really saved him any pain, but that’s besides the point.
The woman from IGT informed me that somehow Gavin’s PICC had come out – my suspicion lies on two of the nurses who replaced the dressing the other day – and that this had been seen in an X-ray from SATURDAY. Isn’t today Monday? No-one had even looked at these scans – so the old adage “no news is good news” doesn’t work here. No news means that the bad news hasn’t been shared with you yet. We returned to IGT to try to fix his PICC line, at which point Gavin woke up from a nap and freaked out when he was wheeled away from me again. Heart-break #2 of the day. Unfortunately, or maybe not so much, they were unable to save the PICC, and I flatly refused to let them try to put in another one. I bought him almost 48 hours with my laser-death eyes. We go back to IGT on Wednesday.
I’m trying to limit my child’s surgeries and procedures to one a day please.
Yes, I’m angry today! I’m angry at the hospital and everyone in it for making Bean so miserable right now. My mission at the moment is to try to limit the number of nasty things that are done to him in one day, and to get the nurses on side with that. It’s not easy.
The silver lining: Gavin’s head is no longer attached to an external drain and so will become much more mobile over the next couple of days, thankfully.
I am sure there is a line up of 10,000 people long that would volunteer to take the pain for him. I would without a moments hesitation. I am so sorry for this nightmare of a roller coaster that you are on. Wish I could get you, Craig, and Gavin off of it. Our thoughts are with you each and every single day. You are his mother and reserve the right to be Mother Bear when needed. You are the one that gave him life and because of of that you are his advocate to protect the quality of that life- bring on the Laser-Death Eyes. If you need back-up Laser-Death Eyes let me know…. I will be there in a flash. Lots of love, us
be angry. be happy. be anything you need to be without justification. just have faith in your strength… and especially in your mom-instincts.
not a moment goes by without thinking of all of you.
sending positive energy and love your way, always.
The underlying problem, as Erica’s father put it, is that there is no Case Manager – one person to co-ordinate between all the teams.
Gavin should never have had a PICC line; he should have had a Central Line or Port instead because that is what is needed for chemotherapy.
A two minute conversation between Neuro and Oncology would have saved two operations.
We are with you on this roller coaster ride and can only imagine the heart break of having to part with your baby everytime he has to have a procedure- not to mention more than one a day. Not only are you his parents his protectors and mama bear, but you are also having to oversee and question everything ..Craig is right- a case manager would be amazing but in the meantime you have to trust your insticts and let the staff know your concerns. Erica we are sending you and your family all our love and looking forward to sunny days when this is behind you. Please kiss Gavin for us and I look forward to seeing you soon. xoxo
Erica, I honestly can’t believe that you have been so patient and haven’t freaked out before this! You are amazing and strong and gracious and gentle through an incredible time! Allow the whole spectrum of emotions and don’t feel bad about it! Nobody should have to go through what you are going through. Just be true to yourself and keep protecting your child. You are mom and you know best. Trust that! And if you need anything, please let me know. (I got into a fight with a doc. at sick kids about Lua’s eye! He told me that what I was doing was wrong and basically made me feel like I was a bad mother. It was horrible. I still think Sick Kids is the best hospital ever and I”m so thankful that we have it!!)
Take care of yourself!! Sending lots of love!!
Lisa