Tuesday, May 26, 2009
A DAY IN THE LIFE
Yesterday was Dawsyn's monthly IVIG (Intravenous Immunoglobulin) Treatment. We sent Matthew off to school and headed off to Alberta Children's Hospital for the day. Last month the treatment went really smoothly ... get the IV set up, watch some Dora the Explorer, have some lunch and a little nap, watch a more Dora and go home. We had convinced the doctor to let us try the treatment without benadryl to prevent an allergic reaction. She did great!! That's what we hoped for again.
All started well. Dawsyn was in a great mood and bossy as usual. She advised the nurses on how to do their jobs ... after all, she's been getting IV's for 8 years now, she knows the routine! "Squeeze my arm with that thingy, use this vein here, it's looking particularly juicy today, wrap it all up tight incase I decide to take it all out myself before the treatment's over!" Routine!
Unfortunately, after about 1 1/2 hours of watching DVD's, playing Go Fish and being all together pleasant, Dawsyn started to cough. I told the nurses not to worry, she is often phlemy ... it's not an allergic reaction THIS time. Then the wheezing started and the gig was up! The dreaded benadryl was drawn up and injected through the IV site and within 30 seconds all H - E - double hockey sticks had broken loose!
The screaming, the kicking, the hitting, the biting and the fighting. She wants to be held and comforted but is hyper-sensitive so it doesn't feel good to be touched. Hold me ... don't touch me ... hold me ... don't touch me ... and all the while screaming as if she's on fire and there is nothing I can do to help her! Eventually she fell into a fitfull sleep. When she woke she was less miserable but remained grumpy for the rest of the day. The ride home was fun. She would reach over and pinch or hit me and absolutely refused to wear her seatbelt ... we're travelling on the QE2 so I can't exactly pull over to put it back on her every 3 minutes! She had one more "benadryl melt-down" at bedtime and then she slept well for the night.
It's not the first time this has happened. This is Dawsyn's regular reaction to benadryl but there doesn't seem to be anything else to give her for allergic reaction to the immunoglobulin. Why she didn't react last month but did this month, I don't know but we will have to give her the benadryl as a preventive measure from now on. That means we can expect this melt-down every time she has a treatment.
She slept it off and woke up happy and busy this morning. She found a phone while I brushed my teeth and was making calls by 7:30! Good thing my friends get up early too!! Somehow she can meet the next day like nothing's happened and I'm left feeling I've been run over by a train!
On the bright side ... yes, there is a bright side ... these treatments really seem to be helping. Since we've started the IVIG treatments in January, we've gone from 12-15 seizures nightly to only one or two every few days. It's been a remarkable improvement and we're witnessing many positive effects of fewer seizures. She's learning faster and more easily, she's less sleepy at school, she's less irritable (except for the DAY OF the treatment!) and all-in-all is doing very well. It also means that we often get to sleep through a whole night without being awakened by a seizure ... 11:00 to 7:00! What a treat!!
There have also been some negative positives ... is that possible? Apparently! Because Dawsyn is feeling so much better, she is back to being HYPER and has been driving me CRAZY!! I keep telling myself that it really is a good thing that she's feeling so good but it's been exhausting trying to keep up with her. We are back to not only having to watch her nonstop but having to DO something with her nonstop. She's no longer content to sit and play games on her computer or play the piano, she has to have one of us DOING something with her at all times or else she's doing something she shouldn't be. The biggest temptations lately are the stove, the microwave and the phones. She likes to crawl up onto the stove and turn it on ... she says she's making macaroni! She turns the microwave (usually empty) on and lets it run because she likes to count down the numbers with the timer! That's safer for her than the stove but not so good for the microwave. The phones! Well, if you've phoned here lately or if I've phoned you, your number is somewhere in the phone history so don't be surprised if you get a call from her! She does love to visit. At 7:37 this morning she called my cousin who lives in the Ukraine!! His Canadian cell phone number is stored in my cell phone for the times he's back in Canada. I don't know what kind of message she got but she wasn't very impressed that there wasn't a real people on the other end! Maybe you should check your messages Al, she may have left you a nasty one about answering when she calls! By the time we left for school at 8:15, I had taken the phone away from her at least a dozen times.
So, is the trade-off worth it? Yesterday, holding her and crying because I could do nothing to help her I'd have said a resounding "NO"! However, today I know she's at school learning to read and socializing with her classmates because she didn't have any seizures last night so I guess I'll have to say "yes". We'll see what tomorrow holds ... probably a few more phone calls!