Survivor

I should have known I am too old to live in an apartment with 3 college kids, one loud cat and a dog who is apparently not house trained, even just for 72 hours.

Parker's roomies have no sense of courtesy. 4:05am this morning they were STILL going from bedroom to kitchen and back, yelling to each other about who ate the last of the pizza and why'd the dog get into the trash. At 4:05am thank you very much. Then something made me sick. Every time I threw up I thought of Parker and told myself to toughen up. I'm pretty sure I am over my fear of throwing up.

Other than allowing myself the luxury of laying in bed all morning, clicker in hand, watching a really good tennis match at the French Open, I was pretty miserable over there. Since John is staying at the hospital anyway, I came back to the room at the League House for the rest of my "vacation."

Parker had a rough afternoon yesterday, and even worse night, and the worst morning in a long time. They had the short N. nurse last night, the spazzed out woman who tried to stop Dr. Morrison from taking him to surgery until she could give him a bath. I told John to watch out for her, to be sure she didn't get near Parker. He found out why when Parker threw up all night and was choking on the stuff he'd aspirated through his trach and she wanted to measure his urine output while John was trying to clean out the trach so he could breathe. Then she was stupid enough to ask John how she measures the urine, was it this number or that one? What a dumb*%&#.....

His pain level had become unmanageable, and this morning one of our favorites, Nurse Sherrie, discovered that the iv line for the Dilauded had a leak in it. No telling how long it had been that he'd actually had any pain medicine, but it apparently had been like that all night. We love Sherrie. She rode with Parker in the ambulance the day he had to go to Round Rock for the CT scan, the day he went into shock and had to have his first surgery. He still remembers how she held his hand and let him lean against her in the ambulance.

On top of the pain, his digestive system is still fighting him, and when Lindsey came for Physical Therapy today it was a nightmare. The doctor came in and said something about the NG tube and both Parker and John burst into tears .... Parker will do anything to not have that NG tube put back in because he thinks they will tell him he can't have water. The doctor re-read all the notes and discovered the problem with the pain meds, and also saw that Parker has been able to get some things past the ileus, so she changed her mind and upped his meds again to give him comfort. Whew! Saved by the diligence of a thorough nurse and a compassionate doctor who took the time to find out what other reasons might still be making him throw up.

His belly is huge, swollen from the ileus and gas and water that is accumulating on his abdomen. They've put him back on Lasix and upped his iv fluids, too, in an attempt to get it all straight. I haven't seen the kidney doctor for days, but Parker's BP is also higher than normal again, probably from the fluid retention.

When I got there today to deliver his lime and cranberry juice, he was working with the OT guy, Eric. Even with all the pain he'd been in, all the throwing up and diarrhea, Parker still wanted to stand, wanted to walk, and tried his darnedest to get to the chair, but couldn't because he was so exhausted. Eric told me he was really impressed with him, after everything he'd been through over the last 24 hours that he was still pushing himself.

Then the wound care guy showed up to change out the wound vac. That always causes Parker more pain (if I thought you had the stomach for it I'd show you a picture) and he hates having it done. But Parker is having company tomorrow. His aunt and two cousins are coming to see him and he is so excited about it he doesn't want to be in pain or miss out on any of the visit. So when the wound care guy offered to come back tomorrow because of how difficult the last 24 hours had been, Parker said no, let's get it done now, get it out of the way.

I already hurt, might as well get it over with so I can see my family tomorrow when they come.

I was mighty proud of that boy. Eric, the OT guy, was standing outside the room with me when we heard Parker say that. I looked at Eric who shook his head and said,

It doesn't surprise me, Parker is an inspiration to all of us in Physical and Occupational Therapy. He's got more pain, but also more courage than all the other patients on this floor put together.

That, Parker, is why you will walk out of this hospital someday on your own two feet! You're tough, a survivor, like the bison in the photo.

Roller Coaster

WEDNESDAY: One of the "bad" days. But we are trying to always remember that bad days now are nothing compared to several weeks ago.

After getting the report from the internist about the psuedocyst "organizing" on his pancreas ~ which floods our hearts with terror at the mere mention of the words ~ we held our breath and waited to see the surgeon. He read the internist report before he came in the room and must have known I would be waiting to pounce.

By the way, do nurses write notes on everything the family says for all the doctors to read? They always know everything.....

Dr. Garcia was pretty smart. He brought me down to view the CT and MRI reports and pulled each one up on the computer screen for me to compare myself. The CT scan from April 13th, the day Parker had his first emergency surgery, showed the huge, softball size cyst filled with the VRE bacteria. Compared to the kidneys and the stomach, it was massive. I couldn't even see the pancreas.

I could understand why it caused Parker so much pain. Seeing it on the screen brought tears to my eyes. That dark mass was the reason for my child's agony, the source of the infection which put him into septic shock, that caused the abdominal compartment syndrome and the entire chain of events that almost killed him. Twice.

I felt rage in my gut when I looked at it on the screen, and an odd fascination. Then I wanted to pump my fist and cheer Hooray! when I saw the scan from May 15th and it was gone. The pancreas was minuscule by comparison to the cyst that had blocked it from view on the April scan.

Then he showed me the scan from the day before, Tuesday. What he wanted me to see was the small cyst on the tail end of the pancreas and what the radiologist referred to as "organizing." The cyst is the same size as it was on April 13th, he measured them for me. So no change except the outer lining was slightly more defined, which is what the radiologist meant by "organizing."

In a nut shell, this is supposedly the normal progression in the life of a cyst that small (Let sleeping tigers lie ~ don't anger the pancreas! That's what Yonus had told us was the reason they didn't automatically go in and whack the thing off. Because the pancreas is always waiting to attach and God forbid, we don't want that.

About 6:30pm Wednesday, Parker got a bolus of Dilauded and an anti-anxiety med because he was in so much pain. He fell asleep and except for when he threw up at 9:pm (which made them tell him he couldn't have ice chips anymore, or water .... and that always means an agony for him I have trouble dealing with) along with the other normal nurse-waking-you-up-in-the-night things, he slept all the way through until 9:30 the next morning.

Willie Nelson played from his MP3 speaker system all night, and when Parker woke on Thursday he said, I haven't felt this good in months! Yea!

THURSDAY: Yesterday was a great day. Parker felt so good and required very little medication throughout the day (until the surprise ending). Dr. Moore said he could have tiny, tiny sips of water and ice chips, plus he could/should chew gum and suck on hard candy, which made the day extra special. I had to ward off the wound care people so they didn't interrupt PT because Parker was so determined to try and walk a step or two.

No walking, but I did get a picture of him standing up. Parker was disappointed because he got dizzy and couldn't stand as long as the day before. But he stood on his own with only help from the walker to brace himself. To the rest of us, that was HUGE!

Dr. Garcia came in and ordered an upper GI and colon barium study. Thank God! Early afternoon they took him downstairs for this to be done. Parker got the watch when he first drank the barium, watched it go down and stop in his stomach... hesitate, then start rising again into his esophagus (not the right direction). When he told the girl he felt nauseous, she had him swallow again without anything in his mouth and he said the contrast rose up in his esophagus, then flushed down out of his stomach.

Basically that means the reason he has thrown up so much over the course of his life is because he has GERD, a more heavy-duty form of acid reflux disease. Finding out how to treat that is for a different day. Although that is what has caused his esophagus ulcers in the past, it isn't the real reason they were doing the study.

After 4 hours, they brought him back upstairs. The barium had stopped at a certain point and wasn't moving anymore. They returned at 8:pm, took him back down for another exray, and Dr. Garcia called to tell me the barium was still in the same place.

This is from the ileus. The same as a blockage, but it is a mechanical failure to operate, so to speak. The intestines just don't work in that area so everything backs up until he starts throwing up. This is probably what has been holding him back in his recovery, maybe more so than the pancreas.

The treatments are: Get him off the narcotic pain meds (okay and I'm moving to Kansas if they stop the pain meds)..... Make him move around more (without pain meds? Really? Alaska sounds too close!)Be sure his potassium stays within range because low potassium will cause an ileus by itself, plus cause heart mis-firings..... and if none of the above work, more surgery to remove the paralyzed intestine.

I'm not crazy about those choices. But, at least we know. They are coming for him soon to do the last barium exray to see if the stuff moved at all over night. That will determine how aggressive they have to be with his treatment.

I think I hear Wyoming calling my name.

Oh, I forgot, the yo-yo's who took him down to radiology last night DROPPED him when they transferred him from the bed to the table. I kid you not. He came back in excruciating pain. They apologized and said the table was about 3-4" lower than the bed. Why??? I was there in the afternoon and the guy was so careful to be sure it was just a straight scoot. Why didn't these guys pay attention? UGH! I, of course, had decided I would stay upstairs and grab some dinner and a break while he was gone. That'll teach me to be selfish. And that patients really do need an advocate.

FRIDAY: They just came to get Parker for the last exray of his abdomen to see how far the barium went overnight. The girl from exray who came to see him said he would be gone several hours because he was having an upper GI study. I said no, he'd had that yesterday, Dr. Garcia had told me today was just one exray and if it was a big, long study that meant he had to take different equipment with him (like his pain meds and pump!) She called Radiology and they confirmed what I had been told. One exray and he would be back. His belly is pretty distended today so I would bet the barium is still in the same spot.

PEOPLE: Yesterday we got Amy for our CA (Clinical Assistant). We love Amy. She is a 4'11" dynamo with two little pigtails that stick out Pippy Longstocking style from the side of her head, and a lotus tattoo on the inside of her elbow. She waltzes into the room first thing and says, "It's going to be a great day Parker because I'm back!" Parker smiled. We do like her a lot. Last night we got Red, who physically is the polar opposite from Amy, but we like him just as much.

Our nurse during the day was Miranda again (the smiling, nice Miranda, not the one from Down Under ~ the new term for ICU). Miranda's little brother is the starting center for the U of OK football team and is expected to go in the 4th round of the draft next year. She very proudly showed us photos, once we discovered our mutual love of football.

Nurse last night and the night before was Jessica, aka: Coco. Very nice and Parker had two great nights of sleep with her. Can't beat that kind of magic!

Another Storm

This photo was taken this morning looking out Parker's window as a thunderstorm moved across the sky in the distance. Texas skies are always unique in a spooky kind of way.

Sort of like the news we received this morning. After yesterday's CT Scan Dr. Garcia said it looks good, no changes. But this morning Dr. Moore, the internist, said the verbal report from the radiologist suggested there is a new psudocyst "organizing" on his pancreas.

This is so not what we wanted to hear.

Deja Vu

Until today there was a part of me that missed the familiarity of the ICU. I didn't miss the reason we were in ICU, but it's sort of like going to a new school when you're a kid. Even if you hated the last school, you knew it. It was familiar, and normal. The lesser of two evils.

Today I was way too close to the ICU again and I only wanted to run. Parker had so much pain last night he couldn't get ahead of it, even with almost hourly shots of Dilauded. This morning his abdomen was swollen significantly again on the left side, extremely tender to touch, and he threw up everything he put in his mouth. Then he threw up without putting anything in his mouth, he was throwing up bile again. Temperature, heart rate and blood pressure all going up again.

I went with him to the CT Scan floor, which is right around the corner from the ICU. About halfway down The Green Mile aisle. The familiar smell of it sent me into a full fledged panic attack while I was waiting outside the room. Then I heard Parker screaming when they transfered him from his bed to the scanner. I threw up myself in a trash can. I can't rememebr now if I told anyone. Surprise!

Dr. Garcia was annoyed that Dr. Moore (covering for Dr. Turner or Lam) ordered the CT Scan and changed his meds. He came flying into the room when everything was done.

I don't understand why a doctor changes everything I've ordered when she has only seen him twice ... he's been my patient for two months now!

He said his look at the scan showed it was normal except the bowels were still distended. From top to bottom. He said the key is to get him moving with PT. Up and out of bed. I do know what after I had both C-Sections they told me The more you walk, the faster you heal.

There have just been so many things. And can I tell you how freaking scary it is to have to rely on doctors and nurses communicating with each other? Sometimes the system is amazing, other times frustrating.

Our nurse today, Lisa, is incredibly sweet and got it that I was falling apart again. I explained everything we'd been through, all the weeks of terror, and Parker's anxiety since learning what had happened (not to mention my never ending anxiety about going through it!) She was so nice, listened with compassion, and was so gentle and sweet to Parker. I truly appreciated it.

Yonus stopped in to see Parker in his new room. He was so happy to see the big window and the view he now has, and commented that he thought Parker looked so healthy. It was definitely the highlight of our day. What an incredibly nice man.

Who Jinxed Us???

Ugh. The swelling on Parker's left side, coupled with the increase in pain overnight are requiring another CT Scan. He still has two "small" cysts on the tail end of his pancreas (left side of his body) and I guess they want to be sure they aren't raising their ugly heads and causing any problems.

Damn! I'm glad they are doing this, but I feel that burning in the pit of my stomach again.

Please God, please let it be something simple. We're due for a break!

Ileus ~ aka: Another Bump In The Road

So after several really good days, I came in Thursday morning and Parker's abdomen was huge. I mean like a woman pregnant with twins. Or even quadruplets. HUGE! I mentioned to the nurse that it looked distended and she agreed. That's all she said. So I showed it to Dr. Weingarten.

Only thing it could be is gas....

Okay sorry but even I know better than that. Ugh. Dr. Weingarten is supposed to be the Critical Care guy, but there is this line the doctors won't cross because anything to do with Parker's gut is under the surgeons care. I knew it was more than gas.

Dr. Garcia, the surgeon came by. I showed it to him. Yup, he's distended. that was it.

But he's also in so much pain today, I told him. Dr. Garcia answered that by increasing the Dilauded.

Throughout the day Parker's abdomen continued to grow. I sat with him all day and watched that white blanket get bigger and bigger. When Parker asked me to turn the fan off I knew something was much more wrong than just gas. He never wants the fan off.

To make a very long, agonizing story somewhat shorter, we spent a horrible night with Parker screaming in pain. He'd already had so much pain medicine throughout the day he was positively loopy. But he kept begging for more and more and more. Dr. Garcia was called and he added something for gas. Parker had delusions that were terrifying. At one point he was positive he had cut off his own head and left it in the parking lot, and he was pleading with me to go get it for him. I tried to reassure him it was the drugs, but he was in such a panic I had to have Jim come and reassure him too.

Parker, buddy, you didn't cut off your head because if you had I wouldn't be able to talk to you right now, right?

This seemed to make Parker a little calmer, and he finally settled down until the next episode. Like I said, a long, long night. By the time it was over he had emptied everything from his lower intestines ..... several times .... and he had thrown up enough orange, pulpy vomit that smelled like sour orange juice to fill two milk jugs.

He shouldn't have been throwing up because he had the NG tube in suctioning everything from his stomach, remember? Clearly there was something wrong. They FINALLY turned off the tube feedings (the feeding tube goes past his stomach and into his small intestine, so the NG tube doesn't pick it up and suction it out).

We got a CT scan ordered and thank God we had two of the best nurses we have had the entire stay. Simona is from Romania. She was teaching Lisa, who is from Fairfax, VA. Both were exceptional and compassionate and didn't miss a thing. I was so grateful to have them yesterday.

By the time they came on board, Parker's stomach had deflated somewhat from losing all the stuff that had been blocked from going down his intestines properly. But he was still sore, very drugged, very emotional, and afraid. Me too. He also had a fever during the day, and his heart rate started to climb again. Those two things alone are enough to send me into an internal panic. To me they suggest another septic infection brewing. My hands shake just to write that part. I definitely need a shrink.

CT scan showed Parker has a repeat of the ileus he had when he was in South Austin Hospital, when he first had the acute pancreatitis. Before it got as complicated as it is now. Ileus is when portions of the intestines get temporarily paralyzed and lose their mobility, so it is the same as having a blockage. That's what showed up on the CT scan. There are a number of reasons that could have happened. One is that the lasix he has been on all week, which drained 38 lbs. of fluid from his body, reduced his potassium level, which not only caused irregular heart firings, but also temporary ileus. Another reason it could have happened was if there was another cyst growing.

Dr. Garcia said this morning the only thing cyst-like are the two small cysts that were there in the beginning at the tail end of the pancreas, but they are supposedly smaller than they were and "nothing to worry about."

I really, really hope he is right. I am tired of there being evidence of something amiss and the wait-and-see attitude that then leads to another problem. I want Parker to get well. He wants to get well. Parker needs to become more mobile so his gut starts working better and things begin to resolve, but at the same time, the doctors and nurses need to listen to him when he says something is wrong.