I always do and this ability can at times mean the difference in life or death for Jophie and at other times it absolutely eats away at my very being.
Ever since Jophies last dose of Amikacin on Monday "I knew"
Even the week prior "I knew"
Talking to the doctors office on Friday "I knew"
Through tears, frustration and even anger "I knew"
Driving to the doctors office just hours later "I knew"
Jophie had been gradually going down hill since Monday. I tried to ignore it. I tried to convince myself I was seeing things. I tried to reassure myself that he would bounce back. It was a nasty bug afterall so how could we expect him to be right back to himself so soon after?
BUT.......Deep down "I knew"
I really felt sorry for the doctors office Friday as they all became the target of my frustration. They were afterall the enemy right?
Wrong....
Even when she refused my request for more Amikacin.
Even when she said "He needs to be seen"
Especially when she said.......
"He might need to be admitted"
All these things I knew to be true and in Jophies best interest yet I resisted. And resist I did pulling out every stop. I tried reasoning. I tried whining(and whine I did). I tried persuasion and when that didn't work I resorted to begging. (Nope I'm not to proud)
And through this all "I knew"
I knew that he in fact was showing signs of regression rather than progression. I knew that he really did need to be seen. I also knew that all involved really did have Jophies best interest at heart.
I "know" all this. Really. I do.
We are so very fortunate to have doctors and nurses who love Jophie so much and yes they love even me at my most unloveable moments. I know I could never in this lifetime thank them enough for all they have done and continue to do for him.
Looking back I'm ashamed of the way I acted. I try so hard to react differently but years of watching your child flirt with death over and over tends to take a toll on a body. Can anyone say Post Traumatic Stress? It's definately an emotional rollercoaster I wouldn't wish anyone to ride.
And its times like these that I'm so thankful the doctors, residents, nurses, my family and my friends all have the compassion and patience to deal with me.
In case you haven't figured it out yet.....
Jophie and I are in the hospital and have been since Friday. We pretty much have kept him sedated because he was in so much pain. Today we've spaced out the pain meds to let him wake up a bit and to see how he feels. So far so good!
The trip to the hospital which for us is from Ohio to West Virginia went smoothly as did the visit at the doctors office. From there we went to the hospital and by the time we got him unloaded in the parking lot of the hospital he was a mess. The heat along with the way he felt was just more than he could stand.
Jophie is almost always a direct admit and his doctors always pave a nice smooth path as witnessed by us at admissions. It only took "maybe" 15 minutes then up to the peds floor we went.
It took several hours to get him settled down. I had to literally hold him up against me for almost 5 hours to keep him calm and let me tell you thats no easy feat with a spastic, non-ambulatory, 75 pound 14 year old baby! It was like wrestlin with a baby bear and can I just say......
HE WON! :0)
During the wee hours of the morning we were able to get the chest X-rays which were done in the room. Labs were drawn from his PICC line and from a vein for cultures along with all the other routine things they check. I hoovered out a good snot culture for them and a urine sample was collected just to make sure we didn't miss anything. Last but not least they hung Zosyn and Vancomycin to cover all the bases till we figured out what we were dealing with.
As of tonight this is what we know.....
- His sodium was high but now its back to normal(Most likely due to dehydration)
- His sputum grew Strep Pneumonia and Pseudomonas
- The blood culture from his vein grew Staphylococcus epidermidis(We're hoping this is skin contaminent)
- The blood cuture from his PICC line grew nothing
- The urine was clean
- The lungs looked clear but he does in fact have Strep Pneumonia(Jophies back is so bad you can't really get a good x-ray which is really why you have to pay such close attention to those subtle symptoms he gives us)
Now we are in a holding pattern of sorts. They are running a test to determine if the Staph that grew in his blood is contaminent or if he really does have a blood infection.( I pray not) They are also running sensitivities to antibiotics to make sure the ones we are using are still sensitive and effective against the Pseudomonas plus they have to check sensitivities to the Strep Pneumonia and Blood infection as well.
If the sensitivities remain the same then we are going to keep the Zosyn and most likely add the Amikacin back on board so that darn Pseudomonas is double whammied! We are also keeping the Vancomycin until we figure out whats going on with that blood infection.
This was taken Friday at some point in the wee hours of the morning. Note the very red face and his 2 new fashion accessories.
The red face is due to a reaction from the Vancomycin. He was soooo red not to mention all the kicking and screaming. The laughter is an uncontrollable out of the ordinary type of laugh that for Jophie indicates pain. Because of the brain damage wires cross and at that moment the laughter was from pain. They had to give him IV benadryl to counteract the reaction and now he has to be pre-dosed 30 minutes prior to each dose of Vancomycin.
Now the bracelets. I just have to tell you about this new fashion trend that Cabell has recently started using and quite frankly I find it hilarious! Can you see the barcode on both bands? And what do you do with a bar code?? Yep you guessed it right. You Scan it!
Jophie has been scanned so many times in the last 3 days that I seriously think I'm hearing a beep when they scan him! EVERY SINGLE person that has anything to do with him has to scan him. I think I should request the marked down price or at the very least we should get buy one day get one free. Dontcha think??
Hopefully I will know more tomorrow on the blood infection but for now I think I deserve a shower. A much needed one at that! A little shut eye would be nice too since I've slept only 2 hours in four days.
Pray I don't fall asleep in the shower and drown. :o)
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