Monday, February 1, 2010

Site Changes Suck!


As parents we go to great lengths to ensure our children are safe-- that they avoid injury or anything that could cause them pain or discomfort. It’s instinctive. So when a parent of a child with diabetes has to inflict physical discomfort on their child to keep them safe it is an experience of true paradox, especially when the child is very young and doesn't have the rational understanding of why the uncomfortable procedure is required.

Every three days my husband and I are required to change Jenna’s infusion site. This is a process that, under calm and cooperative circumstances should only take 5 or 6 minutes to perform. However, lately this is a much larger undertaking requiring a great deal more time to plan and execute.

Jenna has become very fearful of the site change over the past several months. I used to be able to carry out a site change by myself with no assistance from my husband. Jenna would willingly lie down on her tummy in the living room with her cute little rump exposed, ready for the new infusion set to be inserted (and with the promise of three or four jelly beans upon its completion.) All that has changed.

Now Jenna tries desperately to muster the courage to be a willing participant in this necessary evil. I watch her face as she tries to show a stiff upper lip. While her daddy and I assemble the paraphernalia required to perform the task I observe her talking to herself under her breath dealing with her own conflicted emotions—I don’t want to...you have to. I see her efforts to buck up when she gets to the point of lying down on the floor, only to lose her nerve and flee at the last moment as I’m wiping the area with an alcohol swab. And it kills me. To watch my three year old little girl having to dig so very deep for courage destroys and exhausts me.

It’s to the point where my husband and I have to accomplish site changes when we are both home so that James can hold (restrain) Jenna while I insert the infusion set. I don’t know how either of us will manage if we have to do an emergency site change when one of us isn’t home. And we are unable to convince Jenna to have a site in another area of her body. Her abdomen is an area we would very much like to take advantage of. But Jenna is strongly opposed, even though she has had a couple of sites changes there in the past.

Jenna had a site go very bad a couple of weeks ago and I knew this was a sign that her posterior is getting weary. We so badly need to explore other areas. Out of desperation, during our last site change James and I decided we would restrain her and attempt an abdominal insertion. But her screaming, crying, begging and pleading forced me to suddenly abort the mission. I just couldn't do it. It felt so wrong. It was, indeed, one of the most horrible experiences my heart has had to endure--to cause my child such trauma. No parent should have to experience the gut-wrenching hell of having to restrain their child while they kick, scream, cry, beg and plead for you not to do something that causes them emotional and physical distress but is necessary for their very survival.

I’m not quite sure what to do at this point. I don’t like making candy a reward but I feel some sort of reward needs to be offered. So if anyone has any ideas, tricks or methods that seem to work I’m open to suggestions...anything. Please.

2 comments:

Moderate Means said...

I'm so sorry :( My daughter is now 6 and we're nearing our 4 year anniversary for diabetes. We just switched to a pump last year. We attempted it at the 3-going-on-4 age and it simply didn't work. She wasn't ready for it at all. We made it all the way through training and up to the first inset. She freaked. Majorly. And she was always so so brave. So, we soldiered through 3 years of injections and waited for her. At 5 1/2, she decided she wanted a pump. We dug it out of the box and tried again. I'm happy to say that for us, waiting was the key. I know it isn't an option for everyone though. It's all so hard :(

Our daughters are very opposite - mine prefers belly over everywhere else and absolutely refuses hip, so we rotate arms, legs and belly. We used to sneak her Lantus into her hip when she was sleeping ;)

Anyhow, just a little cyber support from someone who knows how hard it can be.

Stacy

gracie said...

here I was feeling badly off cos my 14 year old has been having panic attacks just at the thought of trying to do his own line change... when he first got the pump (at age 11) he did the first few changes himself but he asked us to do it when it came to putting lines in his buttocks and from then on he wouldn't do it himself at all. The other night we thought it might be time for him to do it himself now that he is getting older. He sat there for nearly an hour and when I tried to talk him into it he started sweating profusely, shaking and crying. It was getting very late, so I did a quick line insertion, put him into bed and escaped to have a cry myself. Line changes truly suck. You are doing all the right things... it just sucks big time. A friend in Canada suggested that I look at it like toilet training - how many adults do you know who are still wearing nappies? And how many adults with T1 do you know who still have their parents holding them down for line changes? When she is ready, she will decide for herself that she wants to do it, and so will my boy. Until then I will just do what it takes, hopefully with minimal distress to him, one day at a time.

strength and peace to you... (and me!)

gracie from Australia