Brigitte's anxiety is at an all-time high right now. Its not about to get any better. Every morning when she wakes up, I have to disconnect her TPN and gtube. The procedure for anything that involves her central line has to be sterile. Which makes everything a production. Getting her out of bed in the morning starts with screaming. Can you imagine if you had to start each and everyday already being afraid? Brigitte does.
Tuesday's are usually the worst days of the week. Tomorrow I will wake her up. Disconnect the TPN. Disconnect the GTube. Then I have to scrub the end of her line with alcohol for the length of time it takes me to sing the ABC's in my head. I don't sing to Brigitte, because distraction makes it worse. After I am done with that I have to flush her line with 5cc's of Normal Saline. Then I have to scrub the cap again. This time I sing Itsy Bitsy Spider in my head. Then I can flush her with 5cc's of Heparin. She screams bloody murder the entire time. No word of a lie. She is so sick of people touching her.
We will go downstairs and I have to take her temperature. She hates this. I do it under the arm. I have to track her temp twice a day to watch for any signs and symptoms of a line infection. Then we eat breakfast....or I do, because she doesn't eat. We get Brenna, Jake and Sean on the bus....and then the screaming again. She only can bathe on Tuesdays; just to her waist because she can't get the covering to the central line wet; and we change her dressing on Tuesdays.
I tell her that Pam or Rhonda are coming, and she starts to cry again. She knows if they're coming, its not for a visit. It's for business. I time her getting out of the tub so that as soon as they get here, we change the dressing. Changing the dressing requires a sterile procedure. I have to hold her down and push her face away from her chest. She wears a mask (tries too), I wear a mask, and the nurse wears a mask. Her chest is scrubbed with chlorohexadine and skin prep. Gloves are a must!! This is extremely difficult to do. In the hospital it takes about 4 of us to hold her down. She is so strong. You can imagine how hard it is with only me holding her down. I don't put her on the cardiac monitor anymore during dressing changes because her HR is through the roof and that just scares everyone!! After a few minutes the dressing is changed, we apply a special giant band-aid to keep the line from hanging in her diaper area...a big, big No No!!
After that is done, I get to hold her down again while she gets her IVIG infusion every Tuesday as well. This involves sticking her with a needle in each one of her thighs and keeping her on the couch and still for 1h 48minutes...the time it takes for a blood product to infuse into her little legs, which will hopefully keep her from catching anything during the week....even though she rarely leaves the house anymore. Without the IVIG on board, she would be in the hospital every month for weeks at a time due to common viruses that just give you and I a cold....they are deadly to her.
On a normal day, we would be bolusing her high calorie formula through her gtube every hour on the hour. We give her a break on Tuesday's. I figure it is the least I can do for her.
Normally, we would distract her and talk to her about school and who she is going to play with when she gets there. That can't happen anymore either. That's a story for another day as well.
This may sound pretty boring....it is. Why am I writing about it? Because I hate Tuesdays...and its Monday night. I won't sleep all night, thinking about tomorrow. She won't sleep much because I have to wake her every few hours to give her medicine and change her diaper......before the torture starts for the day.
Do you know how hard it is to sit and listen to your child scream for hours and hours and know that there isn't a damn thing you can do about it. I don't lie to Brigitte. I don't tell her that it doesn't hurt. It hurts like hell. It hurts her and it hurts me. I am supposed to be the one protecting her.....and rationally I am. You can't explain to a developmentally challenged child that holding her down and stabbing her with needles daily is the best thing for her. She just looks into my eyes and screams "Don't touch me"...."Don't touch me."
Those are the saddest, and hardest words any parent wants to hear. I hear them all day long. It breaks my heart. It's not fair.
Oh how I wish you will someday have an easier tuesday. I cannot imagine how to explain/rationalize any of that to any child...never mind after all she has been through. I hope you end the day with a glass of wine to say at least you are not at the hospital. Thinking of you!!!
ReplyDeleteYou're so right. It's not fair. It's not fair that we have to do it. It's not fair that they have to endure it. It's heartbreaking knowing that we can't do anything to change it, make it stop hurting, to make it go away. It's the unending frustration at not being able to fix it. We're the mom. We're supposed to be able to FIX IT and we can't. The feeling of helplessness can be overwhelming. Not wanting to sleep because it just makes tomorrow come sooner. At least staying awake make the hours seem like hours instead of instantly being in the thick of it. again. It sucks. I confess - my struggles with Lauren are not as intense but I hope you know I get it and if I could fix it I would in an instant...
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