Life Sucks Sometimes!!

Just ask Jackson!!! From age 12-20 days, he slowly became sicker and sicker.  Luckily, he is a fighter and his body was compensating wondrefully, which saved his life... again!!  We knew something was wrong, just couldn't figure out what it was... I thought for sure his vesectomy site was infected.  But after a trip to the Urologist on day 14, we were reassured that we were just "paranoid".  After cutting dairy out of my diet, because of his fussiness and lack of interest in eatting, we found out from the visitting nurse that he was not gaining weight appropriately.  A trip to the Pediatrician found that he had LOST 3 ozs in 7 days, so we started on Soy Formula and returned the next day for more unuseful suggestions.  I was very frustrated, "knowing" that something was wrong but not knowing what it was.  I also felt that Jason thought I was just being way to overprotective... so I retreated to my room to watch TV and clean all day long.  By the evening on day 20, we decided to take him to the ER, even though we had been constantly reassured that he was not sick and we would prob be sent home to follow up with our Nephrologist after the weekend.  We watched and watched for signs of dehydration... there were none.  He was just irritable, not hungry, and pretty sleepy.  His mucous membranes were pink and wet, his fontanel not sunken, skin turgor good, and of course he was still peeing lots. He looked "good" for being so close to death! The ER staff kept saying that he wasn't all that sick, and after 20+ IV and blood draw attempts, they placed a NG tube to try to give "just a little fluid to see if it perks him up".  When his inital lab results came back, they were so off kilter that they were dismissed as hemolyzed and new labs were drawn.  All the while, internally, Jackson was crashing.  When he finally went limp in my hands and we screamed for the nurse, we were told that he was just fine, just exhausted from fighting the hospital staff.  I KNOW MY SON and knew things were not right.  When the repeat labs were just as bad, the PICU Dr came down with his staff, attempted 2 IV sticks and then literally ran him up to the PICU.  Dr Bob Tamburro was completely awesome, but being left in the waiting room for 1 hour after being told how serious the situation is, is unexplainable.  But, I will try... 

Your heart races constantly, your mouth is dry, you can't cry, you can't think, your belly feels ill, you feel like your floating in a surreal reality, your mind races from important details to mundane thoughts, you can't keep still, you pace the floor, you try to drink water to keep hydrated but it just makes you want to vomit more, you call your parents to update them on the seriousness, you pray, you pray and you pray, you beg to wake up from the bad dream, you worry about your older kids, you fall the the ground feeling completely helpless. 

We were informed of everything by Dr Bob... Jackson's sodium was 108 which caused brain swelling and irritablilty.  His potassium was also at a lethal level of 9.8.  He was tachycardic at 200-210, but afebrile.  He had been cool, clammy and mottled all week.  (Again, I had been reasured that his color was normal for an infant mulitple times)  He was started on albuterol neb treatments, kaexolate via NG tube, and iv Glucose/insulin to lower his K+.  They were only able to get a 24 g in his R AC at first so they kept treating his hyperK+ until it lowered enough to a level that would be safe for sedation and intubation and eventually a central line placement.  Dr Bob's critical thinking process was perfect!!!  Guess that's why he is a PICU Dr.  4 hours later, he was able to be sedated - it then took TWO hours to get him intubated and a central line in b/c his system was so collapsed, due to dehydration.  He was stuck mulitple times in the groin and then they were successful in his R IJ.  Saline bolus were then rushed into his little heart!!  You know Jackson... he ended up being over corrected - his Saline levels were increasing too quickly for Dr Bob's liking and he eventually needed IV K+ b/c his levels were too low!!!  You go Jackson!!  He did, however, need a blood transfusion after being HYPERhydrated - he has gained over 1 lb of pure water weight and looks almost unrecognizably pudgy.  He, again, was not able to open his eyes b/c of the swelling!!

He is now 22 days old... we've been moved to Hell, I mean the Pediatric floor, and he is stable.  He still is receiving BIG antibiotics since is urine and blood infections were resistant to many antibitoics!!  We cont to monitor his CMPS Q12' and he is receiving less and less IV fluids, as his PO intake increases.  We still have to "force" him to eat more than 1 oz at a time though.  He had spiked a 101' fever on day 21, but it has subsided.  His urine remains slightly coloudy (had been clear at home until day 19 but the Pediatrician felt that it was healing skin cells from his ostomy) but the Nephrology team thinks that it is just b/c his kidneys and ureters are still being cleaned out.  Of course, Dr Muchant called from Geissinger and talked to us for 1/2 hour - love that lady!! 

It's hard to keep everything straight now, just a few days and a few hours of sleep later.  The Ronald McDonald house is so very nice and I will start leaving my coins in their silly coin collector boxes from now on. 

I'm completely annoyed by the two other roommates and their families sharing Jackson's room. I'm worried about how long we'll be stuck in the hosp with IV antibiotics (prob 14 days).  Im worried that it will be a scary couple of years trying to maintain a healthy balance btwn his intake, output and Na+ supplement amounts.  I'm terrified that I'll let him get this sick again.  I'm exhausted.  But, of course I'm here typing away so that years from now I can remember the night we thought we lost Jackson...

Sunday March 20, 2011 @ 4 am.

The single worst day of my life.