Thursday, August 22, 2013

5 paragraphy essay

Discharge yesterday went great.  We had to wait until 3pm, but I've come to expect the nurses to drag their feet on discharges.  We had a socially awkward nurse, who should be at an adult hospital.  She brought in all of the nasty meds and told Melanie, "here are her meds she needs to take them now while I am in here."  Olivia was at her limit, so just seeing a nurse freaked her out.  Melanie, a fellow nurse, told her where to go ... "outside."  There is no feeling like taking that last ride down the elevator and sticking that little lady in the car. You just wish her next stop was her real home and not the Ronald McDonald house.

Med list:
pain, Tylenol every 4 hours  - 6ml's
pain, Motrin alternating every 4 hours - 6ml's
diuretic, Furosemide (Lasix) 3 times a day - 1.5ml
diuretic, Spiralactone 2 times a day, 3ml
electrolytes to make up for diuretic, Postassium 2 times a day - 9.8ml
stomach, Omeprazole 2 times a day - 3ml

They usually send them home on oxycodone but it causes a bad itching reaction, so the choice was good pain meds or her ripping her face off.  She seems to do fine with the tylenol and motrin.

Yesterday she ate and drank pretty good.  She played and was trying to run around the play area.  She has limitations, like no playground equipment, slides, or putting both hands above her head.  Luckily the RMH got rid of their slide, and just have a playhouse so she's not tempted every time she is downstairs.  There isn't much we can do about the Williams sleeping style, with both hands behind the head as we go to sleep.  They also say not to sleep on the tummy but as her favorite sleeping position I am not sure what to do.  When she's a teenager I'll apologize to her that her sternum is a little out of whack because I couldn't bring myself to move deeply sleeping sweet 2 y/o Olivia.  Not to mention she wanted to walk around in Melanie's flip flops and fell onto her face.   Perhaps she was safer in the hospital with someone watching over us but we are doing our best, ha ha ha.

She just wants to have fun, but instead we have to force  this nasty postassium down her throat.  If only she could eat 3 bananas a day we would be okay.  I spent a good bit of time last night concocting postassium kool-aid popsicles, but alas she took one lick and handed it back to me.  There just doesn't seem to be a way around that taste.  She used to take all of her meds like a champ, now every med including the tasty ones are like shooting poison in her mouth.   She's crying for poison control and we just keep holding her hands and head chasing around her mouth squirting 2 ml's at a time.  If they made baby straight-jackets we could use one.

Today we are watching her every move, breathing, pulse ox numbers, how much she is eating and drinking.  We are hoping to discern whether the effusion around her lungs is getting better or worse.  Of course this morning she doesn't want to eat as much, and her breathing sounded a little weird but her pulse ox sats were 88% .  Then she got active, and then she wanted a nap, but didn't want to drink.  Basically we won't know until that chest x-ray on Friday whether it is getting better or not.  Yes, we want to scream, but she's just so damn cute.

Plan is eat, drink, force the meds, and hope Friday and next Tuesday are positive results.  Friday we will be hoping for the chest x-ray to look better, and Tuesday's cardiology and echocardiogram appointment will show the effusion is getting better.  If that is the case hopefully the great Dr. Natarajan will say the words Melanie will keep repeating in her head... "you can go home."  Probably going home on all the diuretics but going home nonetheless.  This is how it plays out in my mind, because it kills me to have to leave them on Sunday to go back to work and love on the older kids.  It would just suck if she were to get readmitted or they wanted her to stay longer and I wasn't here to help.  There is nothing worse then being in the hospital with a sick child by yourself.  It really is a team effort or you get drained of life very quickly.   Anyways everyone needs to hope Friday and Tuesday go good so our family can be reunited and Olivia can get back to being Olivia with a new lease on life.  5 paragraph essay done!




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