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.

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.

Slaying Dragons

This is a photo of one of Parker's old football coaches, Scott Murphy, who is now the principal at the middle school Parker attended in MD. Coach/Principal Murphy was being taped to the wall by the students he had challenged to raise money for charity. He said once he was attached to the wall and they pulled the chair away it was scarier than he expected. But it goes to show, you do things for your kids. Whether you are their parent, their coach, their principal.... we do things for our kids.

I'm almost afraid to write this because I am afraid I might jinx it. Today the Critical Care Unit manager, Francis, came to see me with her counterpart, Mary. They wanted to get feedback from me, since I have been a permanent fixture in the halls of the ICU for so long now (Sunday marked the two month anniversary since Parker first went into the hospital, and Wednesday marks the one month anniversary that he has been in the CCU.) Durung the conversation they started talking about when he moves to Intermediate Care. WHEN!

I asked what the criteria would be for him to be moved, because to look at him you can see his life is still being sustained by machines and medicine. Francis said the primary goal would be for him to be breathing on his own, without needing to rest on the ventilator, for a certain length of time. He would have to have been fever free for several more days, his heart rate would need to remain stable, and he would need to continue to make progress in his physical therapy.

Oh, I meant to start out by saying he sat up, unassisted except for balance, for SIX MINUTES today!!!!

I asked about the fact that he still has the NG tube sucking bile and acids out before they have a chance to build up in his stomach and she said he can go to IMC with that. I asked about the fact that his abdomen is still wide open, covered by a wound-vac with a drain coming out that removes the fluid so it doesn't build up and turn into Abdominal Compartment Syndrome (see post from the worst day of my life, April 14th). Francis said that is up to Dr. Garcia, the surgeon, but Parker might even go home AND return to work with that thing attached to him, draining fluid into a little bag he would carry around with him. That really creeped me out.

I asked about the additional 14 liters of fluid he is carrying that the Lasix is helping get off his body. She said no problem, they can manage that upstairs. I asked about the VRE bacterial infection and the fact that he is in isolation. No problem, he can be in isolation up there too. I asked about the three braod spectrum antibiotics he gets IV plus the two anti-fungal from the yeast infection he got in the picc line. No problem. I asked about the fact that we couldn't get a good CT scan, and she said she would look into that (because I don't want to go anywhere without a CT scan assuring us there are no more infected cysts building on the pancreas). I asked about the insulin drip he is still on because of the infected pancreas, and about all the other things that are wrong.

In the end she said it is up to the pulmonary doctors (aka: Critical Care doctors) and his surgeon, but there is a possibility he may be ready to make that move at the end of the week!!! It feels scary and exciting at the same time. It also seems unrealistic to me and I suspect Francis wanted to give me lots of time to think about it.

Is there anything we can do for you to help you with the possibility of this transition? Francis asked me.

Yes, may we please request a room with a view?