Pep Talks

Before Parker moved to Austin, he, James and I were a pretty tight knit threesome. Like close friends, as well as family. We went everywhere together as a unit. Movies, dinners out, dinners in, Sundays in the fall spent watching football, vacations, trips to the book store. We were pretty tight. So when Parker made the decision to move to Austin, we all knew it was the right thing, but we also knew it would be hard.

His leaving was a lot harder for me than I anticipated. The morning he was to leave, to drive the 2,000 miles to Austin with James by his side, I stood next to his Explorer saying my last goodbyes, trying to pretend it was all okay, that my insides weren't crumbling.

It was pretty emotional for all of us, and there was a fleeting moment when I thought he might change his mind. It lasted as long as two breaths, then he said, I have to go now or I won't leave. With those words, he pushed past the emotions that were going to hold him back, put his foot to the gas pedal and squealed out of the parking lot. The green Explorer looked like it tipped a little to the side when he went around the turn and out of sight.

Yesterday, Saturday, I reminded Parker of that moment when he mentally got stuck in Park. We'd had one good day, really good day, this week (until the stupid exray people dropped him off the table!) but we needed more. I coached him into looking at the big picture, not thinking of the painful moment he was in, not allowing himself to think he couldn't do what was on our plan for the day.

Pain is such a huge part of Parker's days and nights there are many times when he tells me he can't do it anymore. I think I am like a person helping someone give birth. I'm going to take a lot of abuse because of his pain, but my job is to help keep him focused on the positive, or on the big picture. Only this labor is nearing its three month mark. He has been in this pain for three months now!

So yesterday I "coached" him out of his paralysis and mid-morning he sat up, then stood up, then was able to sit on the portable commode for the first time. It was a huge moment, such a relief for him to feel he was making progress in taking back control over his body again. He was a real champion. He didn't think he could do it, but he listened to me and pushed his foot on that accelerator and roared out of the parking lot.

I was so proud of him.

The photo above is of a piece of artwork that really belongs in the Museum of Modern Art, but we are lucky enough to have it hanging in Parker's room. It is a cartoon my Dad spent hours, days, working on for Parker. It brought a huge smile to his face when I was finally able to show it to him yesterday, and he has asked for it to be framed when he is better. For now he wants it hung in his room where he can see it because it reminds him of all the funny-crazy things his grandfather has done throughout his life. And that makes him smile. :-)

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!

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!

Look Ma! No Tubes!

The last tube coming from Parker's nose was taken out! I know I never posted a photo when everything was attached, but he was unconscious and I wasn't able to ask his permission. I am so proud of this photo! You can still see the trach tube and collar, but that will have to stay for several more weeks at least.

Parker says the picture looks like a mug shot. I say it is the most beautiful picture I've ever taken of him and that he's been watching too much MSNBC today.

Last week they took out the NG tube which suctioned everything from his stomach, and today they took out the tube they have been using to feed him. It had gotten dislodged and wasn't in the small intestine anymore, it had come up to the stomach and the doctors thought that might be why he was still throwing up a little bit.

That was one LONG tube!

Yesterday was a little frustrating in that Parker's digestive system still won't behave in the manner he would like it to. But we know the more he moves, the better he will be.

Today he worked with the Physical Therapists for over half an hour, a combination of sitting up unassisted (only a little help getting up at first), standing twice and shuffling his feet to the side. This is to be sure his brain remembers how to tell the feet to move when he starts to take steps. Baby steps. Hopefully by Friday. That's the goal.

I have slept at the hospital each night since we moved from ICU. They have a chair in his room that converts top a table, and last night our wonderful Nurse Nancy (see Fairy Dust post from April 12th) gave me foam panels to lay on top of it so it felt more like a real bed. Moving from ICU to IMC (Intermediate Care) is scary in that our nurse has two or three patients, not just Parker. There is a lot less to fret over, but when you've almost lost your life, or that of your child, it takes a bit of convincing that this is all okay.

Today the Critical Care Specialists said their job with Parker was done. They are very pleased with his progress and although he continues to have a lot of issues to deal with, none of them appear to be imminently critical. Remember those words? We've come a LONG way!

John comes back sometime soon and I am hoping when he does I will be able to go out a little west of Austin to visit one of my oldest and dearest friends who has waited so patiently for me. It will be really nice to be in a totally different environment for a day.

Parker realizes there is something very significant about the fact that he lived through this. His life will never be the same, physically, emotionally and/or spiritually. He talks a lot about what it all means, but understands as I do for myself, there are more questions than answers at this time. He still wants me to read the blog to him, and we wove our way through a little bit more yesterday. Parts of it are so hard to read still.

Our nurse today, Lisa, brought Parker a cup with a few pieces of cut up fruit. I wish I had taken a picture of his face when he ate his first piece of cantaloupe. He said it was like Heaven. His diet is now called "full liquids" and for some reason, someone in the kitchen thinks he must love grits because he gets grits for breakfast, lunch and dinner. I'm not sure how grits qualify as liquids, and why they always appear when he won't even eat them. We think it is kind of funny.

Kidney doctor had to put him back on Lasix to get some of the fluids off that have been building up again, causing swelling and high blood pressure. They have stopped forcing him to take the orange potassium liquid, so now he'll have to take the giant horse pills instead. But the orange liquid stuff comes right back up.

Interesting potassium fact: eating one banana a day doesn't cut it. You'd have to eat a large 20" banana to get a significant amount of potassium. Raisins are better, but the best thing is dried apricots. Kidney doc says dried apricots and water are the best things in the world for the human body. :-)