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Sunday, August 05, 2007

Ear and ER Woes

This weekend we had a perfect example of transitioning-- the stage when your child with hemophilia becomes an adult, responsbile for his own care, health and problem-solving. Tommy moved out the week I was in California (nothing personal) and everything went well. Kevin helped him get settled into an apartment in Lowell, and he has been in and out of home, moving furniture, checking in and still working at the local pizza shop. Friday night he stopped by but had a pained look on his face; his ear was really hurting him. (I love how he still comes to tell me!) He has a history of infections, and sure enough, from what I could see, the inside was dark, blocked and leaking fluid.

We discussed options: too late to go to his primary care physician. He could wait till morning and go to the ER or stick it out till Monday. Blue Cross/Blue Shield of Massachusett doesn't make it compelling to go to your primary care. The ER co-pay is only $5 more for a visit. So off he went to the ER first thing Saturday morning. (The pain must have been bad to rouse him out of bed before 11 am) This would be his first trip by himself.

Later in the day he came into my bedroom again, this time with tears rimming his eyes. What happened? He gave the admitting nurse basic information about himself; she noted aloud that he had hemophilia. Soon he went in and yes, he had a whopping infection. The attending physician decided to unplug the ear and gently lanced the infection. It hurt a lot, and it bled. Tommy said, "You do know I have hemophilia?" No, she didn't. Somehow the information from the admitting desk never made it to the attending physician. Or if it did, she never looked at his admitting papers. That was enough lancing for one day.

It is hard for us as parents not to say, "You need to tell everyone all the time in the hospital you have hemophilia; never assume anything!" So hard, in fact, that we did say it. Kevin added, "Even if you did tell the attending physician, she may not even know what hemophilia means practically." Yikes. All these years of hospital visits, and I feel sometimes like we're back at square one. But there was a bright spot, besides Tommy getting good care, antibiotics and Tylenol. He infused himself immediately after the ER visit, showing us that he has at last transitioned out of a denial stage and into young adulthood. It gave us a deep breath of reassurance as he sets off for college.

1 comment :

rubab said...

this blog refreshed my fears..As an elder sisterof a cute little girl Tuba with Glanzmann's Thrombasthenia,she is so dependent on me for help on even the small medications,bleeds and caring for little things.but now i get scared what will happen when i will be getting married in a year or so.throughout these years,i never trusted anyone when it came to Tuba and now the very thought of leaving her makes me upset.but we all in life have to come across such points...now i realize i should have involved other family members in her care too but i never seemed to trust anyone in the world for her proper protection from this bleeding disorder...i wish Tuba and all others children like her a road ahead on which they are fully equipped themselves by all information and confidence to give this disease a very tough time.
regards,rubab

 
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