Wednesday, March 2, 2011

2. B is for Baby Steps

Okay... day two!

So, we left off with Little O being admitted to CHOW for dehydration following a Rotavirus diagnosis at a different hospital. Well, we finally got settled in our room at about 8pm, which is usually Little O's bedtime, but, as anyone who's ever been admitted to hospital knows, getting through the barrage of tests, questions, medical history and other assorted interruptions, means that it's another several hours before you're left in peace. Finally at around midnight we were left alone for a while, and I managed to get the pull-out couch set up so I could also sleep. However, during the night we were constantly being woken up by nurses and other medical professionals who needed more blood drawn, or vitals taken, or even just medical students 'taking a look' at 4am. It was absolutely absurd, and by 5am I'd given up and got up for the day. I'd had about three hours of sleep, and Little O had had about five.

Because he was so tired and ill, my son was also GRUMPY! I therefore made an executive decision to instruct all medical staff and other busy-bodies to leave us the hell alone after 12pm so we could both nap. Little O was getting sleepy around 12.30pm, but he was finding it hard to drop off and just wanted to roll around and tug on the number of tubes and devices attached to his body. At 1pm he finally succeeded in ripping off the splint that was keeping his arm straight so the IV would stay put, and before I could run over to his bed and stop him, he'd already begun playing with the IV itself. Convinced he'd done some more damage than I could see (with my medically-untrained eyes), I pushed the call button for the nurse and held Little O's hands still until we could fix the bandages, splint and IV. After about 20 mins a different nurse came in from our usual one, took a cursory look at the IV, and announced that she saw nothing wrong with it. I protested, and explained that Little O had definitely been playing with it, but she flushed it a few times and stuck to her guns. Then she wrapped the splint back on his arm so tightly I couldn't see any skin from armpit to fingertip.

Feeling unsure but relieved, I tried to get Little O to sleep again, but he started cycling through patterns of sleeping for about 15 mins, then waking up screaming and being restless. Then he'd tire himself out from screaming so hard he'd fall asleep, and 15 mins later the pattern would start all over again. I was really upset. I was so, so tired, and getting frustrated and worried. I called a nurse in (our usual one, this time) to look at him and she said she'd get a doctor, who never came. Then twice I called for a doctor myself, even going out into the hallway to physically bring one back with me. Doctors are not gods, and no matter how much respect I have for their knowledge, profession, or time, I felt as though I needed to start making a fuss so someone would help me with my son.

At about 2pm I called my husband away from his work and he arrived just after 3pm. The first thing he said when he entered the room was: "Little O is in pain". At around 4.30pm we managed to get some more doctors and med students in to take another look, and both my husband and I told them explicitly that we felt Little O's IV was bothering him, and that he was in pain. Finally one of them agreed to give him Tylenol (paracetamol) and a nurse was sent off to complete the order. At 5pm she came back in to administer the meds, and while she was in the room she checked his IV, for the first time since 1pm. Immediately she said, "This has to come out" and pulled off the gauze, tape and splint to reveal a very swollen little arm. She ripped out the IV and ran out of the room to get some help.

I approached the bed to see what the problem was, and to my horror Little O's arm was so swollen that he could not physically move his fingers. His arm was about three times the size it normally is, and he was SCREAMING in agony. His whole arm, from fingertip to shoulderblade, was absolutely massive. It looked like someone had inflated it with a bicycle pump.  When the nurse had taken off the adhesive, the skin underneath had been stretched so thin that the tape had taken several layers off with it and left a gaping, weeping wound in the crook of his arm. There were also blisters and burns, and the whole thing was very painful to touch. The IV must have infiltrated about four hours prior, when he'd been playing with it, and the fluid meant to rehydrate him had instead been slowly pooling under the skin, swelling the arm and causing a lot of pain.

Well, I just lost it. I scooped Little O up and started sobbing and sobbing. I disconnected his feeding pump and took him over to the couch for cuddles and kisses, while both us got drenched in tears. My husband began the practical stuff, by getting us pillows and blankets, and applying the warm compresses the nurse had brought in to soothe the pain and start to relieve the swelling. I was able to calm down enough to tell my husband I wanted to take Little O home, because I felt he was being harmed more than healed under CHOW's care, and he immediately agreed with me. We told the nurse our intentions and she got a doctor in to try and talk us out of it. We didn't listen, and prepared to go home.

Before we left, Little O's regular GI doctor stopped by to see us, and recommended getting some stool samples to test on while we were heading home. As it was non-invasive (Little O kindly prepared a "sample" during the discussion), we said it was okay and then left at about 7.30pm.

More on the results of those tests tomorrow... But just one last thought for today: I called this post "Baby Steps" for a reason. One, because Little O is finally learning to walk, and two, because learning how to be an advocate for your child can take you to places you never thought you'd go. Having a nurse ignore your pleas for four hours, and for medical professionals to cause harm by thinking they know your child's patterns of behaviour better than you do, well, it really made me take a few baby steps in a new direction. I have been forced to face up to the fact that I may be seen (or unseen) to be invisible, and for my instincts to be ignored.   This has never happened to me before, because most doctors my son sees defer to me on how to take care of him in the best way.  However, I am certain, more than ever, that I am the best advocate for my son, and I am certain that I will not take no for an answer next time. I will do better and will be stronger, so that there is never, ever, a "next time" anyway.

Baby steps, baby steps.


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