Friends

Today's posting is about some of the friends we have made here at Seton Hospital. I'll give a progress report tomorrow on the capping off of the NG tube.

First, our friend Amy, formerly referred to as a Pixie-Person. Amy has this remarkable way of making Parker smile, no matter how horrible he feels. As you can see in the photo, Amy knows her role is not only as a friend, but as our own private cheerleader. She is 4'11", was raised in Salt Lake City, raises goats and makes cheese from their milk, taught English in Brazil, has a culinary degree but decided being a chef wasn't as much fun as just plain old cooking.

Amy comes barreling into the room in the morning, throws the curtain back and announces, It's going to be a great day Parker, 'cuz I'm here! Amy is going back to college to become either an RN, or a Surgical First (I think that's what it is called). Parker said she should be an RN. She is definitely one of our favorite people ever and we are always happy when we see her name on the list for Parker's room assignment.

I've written about Red before, but here is a picture of him. Red worked with us when we were on this floor before ICU. He encouraged me to finish reading The Shack, for which I am extremely grateful. He is a unique character who has a huge heart, but won't take any fuss from anyone. I would guess he is a lot softer than he wants anyone to know under a pseudo-gruff exterior. He has a wry sense of humor, is well over 6' tall, and brings homemade cookies to share when he works at night. He knows a lot about plants, doesn't own a computer, and goes hiking on Wednesdays with Amy.

Red said I could put his picture up but he wouldn't pose because he said he isn't photogenic and it would break the camera, and I couldn't get a picture of the top of his head because the flash would bounce of his baldness. He, too, makes us smile.

The only other photo I have so far is of Jim, fondly referred to as Boston Jim. We first met him when Parker was in ICU which is where Jim normally works. We were happy he was Parker's nurse upstairs today... kind of a bonus. The first time I met Jim, Parker was still unconscious. Jim came in the room and saw the Red Sox playing on tv and said, Oh good, we'll get along great if you like the Red Sox! He said that to Parker, not me. Parker, of course, didn't respond because he was still on the ventilator and wasn't aware he was even in the room.

Jim is from Boston. He is a self-proclaimed "dork," to which James responded, I'm a Physics major, I know all about being a dork! Jim's claim to fame in our life is that, until today, every single time he worked with Parker we had huge throw up nights. Like the nights when Parker was swimming in vomit. We have one hour to go on Jim's shift to break that spell.

Even though Jim is from Boston, he has an accent that sounds to me like Mississippi. He was very helpful to Parker today in dealing with some challenges he had, helped him understand that sometimes you have to look at the tiny details to see the progress he has made. I am grateful to Jim for those words.

Three Months

Parker and I wanted to thank the nurses and CA's today for their part in helping him make it through three really tough months. We've got a long way to go, but there are people on this floor we have not only made friends with, but who often bring us the only bright spots on difficult days. We wanted to do something to recognize their part in his recovery. Something small.

Nurse Nancy (tall Nurse Nancy, not the short one we asked to not have come back....) told me about a neighborhood not far away she thought I would like. All the nurses AND the doctors are encouraging me to leave the hospital for a few hours each afternoon, so they made up a list of places to go that are not far and are free or super cheap. This afternoon I made a trip to a half price used book store that has fat, cushy chairs placed throughout the store. I spent several hours leafing through the pages of a book on Wyoming photography.

Later I stopped at Quack's Coffee Shop and bought some funny cookies for our friends. That's what the photo is of ... the cookies. I got the lobster cookies because I miss Bay Head, the gingerbread men because they were motorcycle men and made me laugh, the flowers for obvious reasons (hello Hoover-Fisher!!!), and the rainbows in case any of the people here were gay.

The cookies were a hit. Amy and Jessica got theirs first and, after I pulled out two for Lisa who won't be here until tomorrow, the others pretty much flew out of the box. And yes, one of the guys was very pleased I thought to get rainbow cookies.

Parker had two good PT and OT sessions today. PT worked on endurance stuff ~ marching in place, standing as long as he could stand (today was close to 6 minutes including the marching), sitting in the big chair so we can push him out to the courtyard someday soon. OT started working on things like standing to brush his teeth, comb his hair, leaning left and right so someday he can put on his own socks and pants again. Anything to do with every day life that he has to re-learn how to do. Once again, thank you God for the opportunity to have to re-learn these things.

Dr, Driskoll said the lab reports suggest a possible blood clot formation again so he is increasing the Lovanox and will have the ultra sound people come and take a look at his legs again, just to be sure. I'm glad he is being cautious.

Tomorrow will be the first day Parker's Dilauded is reduced by half AND he won't get the extra pain med Dr. Garcia gave him for a couple of days. Should be swell..... :-)

The Healing Wall

Today marks the three month anniversary since Parker first went into the hospital with a case of acute pancreatitis. Three months!

This photo shows only a small section of Parker's get well wall. You can only see 1/3 of the cards and notes and drawings we have hung, they wouldn't fit in the window. But for those who want to know, these make a huge difference in his spirits.

NG tube went back in yesterday morning. By the end of the day it had suctioned out so much nasty, gross and disgusting stuff from his stomach and upper part of his small intestine, I can't believe he wasn't more cranky and complaining more about being nauseous. Truly.

So now we are waiting for the stomach to decompress, which will take pressure off the small intestines and hopefully help resolve the ileus. They have begun decreasing the amount of Dilauded he gets (apparently he was on a super hefty dose for a long time) and I imagine by tomorrow I will be hearing about it from him. But if we don't get him off the narcotics the ileus just isn't going to go anywhere. It is holding us back from moving on to a rehab center.

For the first time last night, actually at 4:am this morning, Parker was able to feel the sensation of needing to go to the bathroom (sorry, if you aren't used to the graphic details by now, stop reading). We worked lightening fast and got him unhooked from the NG tube, the trach tube, the heart monitor, breathing monitor, BP cuff, moved the catheter and the wound-vac machine out of the way, unplugged his IV pole, got the bed deflated, and Parker up and onto the commode in record time! Without pain meds! It was a really big deal. It meant to him that he is getting a little more control over his body, which is huge. Of all the things he has gone through ~ other than finding out we were told he was dying twice ~ this aspect of his illness has caused him the most distress.

So that was last night. His nurse for the past few days, Miranda, is off now and we have the slow moving nurse who let him go without pain meds for 3 hours over Easter weekend, right before he went into shock. So I will have a conversation with her if I see she isn't keeping up with what he is now allowed to have. Miranda is the one whose brother-in-law is the center for the Oklahoma football team and is expected to go in the 4th round of the draft next year.

Amy is here today but not working in Parker's room. But she popped her cherrful little head in for a few minutes and I will ask her to check on him for me during the day while I am out.

Spirit Dance Road

This photo was taken from the top of Spirit Dance Rd. in Wyoming. Parker drove to Jackson Hole one summer and worked at a resort on the top of this butte. This was the view he saw every day. The Tetons are in the distance, and in the valley is a ranch I covet like no other.

This is going to be a rough week and I think it's important Parker and I both remember the end will justify the means. The total suckiness of this week is going to push us past this point, one huge stride closer to the finish line. Parker wants his life back. He wants to go home. So do I, trust me. But neither of us can until he is well and this is just one of those steps back we have to take in order to rev ourselves up and zoom forward.

Dr. Garcia put the NG tube back in this morning. Parker panicked a little (understandable) but it was over fast enough. That's the benefit of having a surgeon who has taken Parker's case to his heart and will come and do that kind of thing for him, rather then leaving it to a clumsy nurse who might have to do three tries before getting it in correctly.

He threw up a huge bucket of bile right before it went in, and since then it has sucked out almost 1800 more cc's in less than two hours. Imagine carrying all that around on your stomach. Ugh. Barf. Gross. But it is visual progress. For me, anyway. He is pretty pissy right now so I'm leaving him alone, as per his request. Only Amy and Lisa have been able to get a smile from him today. Thank God for those two smiling faces.

Keep your eye on the prize, Parker! We're coming around toward the back stretch!

Rough Start But Thank God For the Pixie People

Parker's having a rough time today. All the barium he drank for yesterday's tests is coming out both ends, violently. His digestive system just isn't working like it is supposed to. Like it doesn't remember what it's supposed to do. Of course since he can't even sit up, let alone get out of bed to the bathroom, this means lots of messes today.

I remind him how thankful I am that he has the opportunity to be sick because he is alive.

The nurses seem exasperated and I want to give them the evil eye, but I don't because I know we need them to be our friend. Thank God for the little dynamo, Amy. The 4'11" pigtailed Pippi Longstocking Clinical Assistant. She is very sensitive to Parker and understands his emotions and humiliation, and she does just the right thing at the right time to make him more comfortable, and less embarrassed.

Thank goodness for pixie-people!

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!