Tuesday, December 14, 2010

You're Not in Kansas (Or Primary Children's) Anymore

I've been replaying the events of this morning over and over in my mind, trying to think about how I feel about them. I'm not a confrontational person, and I usually get over things that upset me pretty quickly. But this morning's radiation appointment was HORRIBLE, and left me feeling very uneasy about Mason's care.

It started off like a normal radiation appointment, with me taking Mason to be checked in, and then walking with him downstairs and across the hospital to the radiation department. We have been working with Mason very diligently to help him get over his fear of being "poked." We have had conversations at home, therapy play with his buddies, and the Child Life Specialist has been working with him at Primary Children's every time we go to in. He has been getting better and understands more now. Lately, there has been a lot less crying, and he stops immediately after they are done poking him. We were getting somewhere.

And now we'll be starting all over...and it may be worse after this.

Mason's port had been left accessed all weekend. I have no idea why, but the anesthesiologist refused to take the pic-line out (the tube that has a needle sticking into his chest) on Friday when my sister asked him to (I asked her to make sure they did that). Mason HATES having it in, and the only thing that keeps him from ripping the thing out, is the thought of having another shot to put another one back in, although he picks at it constantly. But we had been working with him, and he was getting to be okay with the idea of being poked--as long as he had numbing cream on.

I had been told by various medical staff all along that: a.) I would have a choice, if I wanted the pick-line to be left in or not, and b.) It would only be left in M-F, and it would be taken out for the weekend. This is the reason I chose a port that goes under the skin: Mason needs to be able to shower, and he hates having things like tape, tubes, needles, stuck to him.

When they wouldn't take it out over the weekend, I was furious. But I got over it quickly, and instead had Latu ask the Oncologist to take it out after his chemotherapy yesterday. I did this knowing they would have to poke him again today at radiation, but I knew Mason would do better with it this time. Plus, it was hurting him over the weekend, and he had been begging me to take it out and to let him shower. And just as I knew he would, he did do better today...until they hurt him by grabbing his port and squeezing it with both hands. Then all heck broke loose, and I got to sit there and watch my baby cry and cry while they poked him four more times over the next 10 minutes, and squeezed his port again and again to try and get the needle in right. I don't know if this is common knowledge or not, but that port is SCREWED to his chest! It should not be squeezed at all.

Now just to clarify, Mason's port has been accessed three times before: twice by other anesthesiologists at radiation, and once at Primary Children's. There was never a problem, and it never took longer than a few seconds, allowing Mason to see how quick and painless it was. The three different people who accessed it, only had to look at the bump on his chest, touch the top of it to find the middle, and then poke him. The end.

I won't go into the agonizing details about what happened today. I had it all typed out, but I felt wrong posting it; I'm not trying to give a bad rep to the hospital, or that specific radiation center. But I will tell you that there is no reason that what happened, should have happened. None at all. And the excuses we were given for it are not excuses at all.

And that's where the hard part comes in: I'm trying to figure out how to react. I want to be angry. I am angry; furious, even. I want to switch hospitals, or at least drive to Primary Children's every Monday and have them access his port, because they know how to deal with children. But I know that with good, calm communication with the right people, this will be a one-time thing and I may not have to resort to extreme and hasty measures. Because I can assure you now, it will NEVER happen to my son again. There are many solutions to this problem, and they will be discussed tomorrow with the Radiation Oncologist, and a Social Worker from the hospital.

For now, I am praying for patience, guidance, and the right words to say to make Mason's case heard and understood.


I wasn't going to post this today, but I wanted to end on a good note, since Mason did too. He got to go to his "fun" doctor after all that crap that went on earlier today. He has been excited about it since the last time, and asks every day if that is the day he gets to go to his fun doctor. Well, today was the day, and he didn't have any problems when I told him that's where we were going.

He is doing even better than the last time we were in. His neck movement has improved and he almost has a full range of motion now. Mason just loved being able to play all the games and toys. But once the therapist exhausted all bribes to get Mason to perform the tests and stretches he needed, he brought out the big gun: A bike that Mason instantly fell in love with, and got to ride all around the clinic. And just to add resistance and give his muscles a workout, he got to take turns pulling the therapist, and then me, around on a rolling chair behind him. He LOVED it, and was pushing really hard, letting him pull pretty fast. He thought it was the greatest thing in the world, and cried when we had to leave it behind.

But the therapist has given him instructions to do the same thing at home, so you can bet Mason is going to be giving his muscles a workout probably daily. :)


  1. Great post! You have a right to be angry and yes, it is hard to keep your temper in check. Best to count to ten. However, you are right, that did NOT need to happen. Been there where you were today and I've had to deal with professionals and you wonder sometimes where their brain cells are! They can be insensitive. It's like, hey, how would you like me to squeeze you and see how it feels! You're thinking that, right? Take a deep breath, pray and the spirit will guide you. I've been rather direct with doctors and as a parent you have the right to choose the course you want to take for medical treatment of any kind. I have always been grateful for the doctors and I have always been grateful to be in tune with the spirit to direct me and you will know what and when to say what needs to be said. I had a nurse put on report for careless hygiene. I've been direct with two doctors and let them know what went wrong and what should have been done. I have refused a doctor to step across the threshold into the hospital room to see Kirsten. Thankfully those incidents are few compared to the wonderful care Kirsten has received. Thank goodness children have mothers to take care of them! One final thing, when doctors know you come in and are prepared and intelligent they treat you a lot differently and respect you more. They treat most parents like you're too fragile or can't take in all their information. I let them know I am prepared for anything they have to share and tell me, don't hold back, I can take it. I don't want to be treated like an idiot. Our best to you in further treatments. You're a wonderful mom! ♥

  2. Ah, I'm so sorry he had such a traumatic time! It is so frustrating when you feel like you're getting somewhere with the port accessing and then you take steps back again! We've been there with Elena, too. I can't believe they were squeezing his port area! Elena's surgery site was very, very sensitive for months after the port was placed. I can only imagine that Mason's is still, too! Poor guy!

    Primary's really is such a wonderful place - it makes SUCH a big difference that they deal with kids, kids, and more kids. They are wonderful, fast, and accurate on the procedures, pokes, etc. that they have to do on children. Our youngest daughter had to have multiple labs drawn - we took her to a regular hospital for the first draws and they had to poke her four different time and on both arms because they couldn't get the vein. (Same thing at other regular hospitals for other lab draws - multiple pokes and a SCREAMING child). We took her to Primary's for other labs one time when we were up there for Elena's chemo and they had the vein on the first try. It was no big deal for them because they always poke kids. It was such a better experience!

    We had similar problems with traumatic port accesses with Elena and our home health care nurse. She could not figure out how to access it - and never once had a successful poke. She'd come to access it and poke Elena, and poke her, and poke her with no success. It was really traumatic for Elena and really frustrating because she had been making good emotional progress with good accesses at Primary's. Finally, my husband asked our nurses at Primary's if they would train him how to access her and ever since then he's always done it. Our home health care nurse never does. It makes such a difference. It's taken a while for her- she still has cried, but its gradually getting better. Two days ago, she walked right up to my husband without a word or a tear and let him stick the needle in. It was amazing!

    I'd say stand your ground and be direct with the doctors/nurses. You are Mason's best advocate! And the hospital is a business after all and they should be earning your business and working hard to please you and give Mason the best possible care.

    Good luck!

  3. Pene, I'm sorry you (and Mason) had such a crazy time at the Radiation Clinic today, although I'm glad it sounds like things are on the up and up. I know it's on a totally different scale, but Sheldon had an intestinal infection a couple of years back that got pretty scary. He had to have his blood drawn a bunch of times, but at one point they randomly decided to have some newly training nurse practice on Sheldon (right, an 18 month old, good idea, guys). Oh it was horrific and finally 45 minutes later, when they were still pinning him down with 4 staff and jabbing him, I finally lost it and told them to get someone else in (they had tried 2 other trainees, but wouldn't just bring a dang professional in!). Anyway, I learned an important lesson that day about what I can do as a mother, I guess I always just felt like you bowed to the medical professionals. Anyway, I just wanted you to know that I went home with the same feelings as you like "how the heck do I handle this next time and what should I have done?" It sounds like you are handling it all amazingly well, though, and like Mason will be in good hands this Monday.

    Hope you are feeling better! I love being kept up to date on all of this, thanks for your posts.