Get The Truck!

What an exciting day! A day we thought was going to be one of the worst, has turned into one of the best. God has a funny sense of humor at times.

Parker walked 50' today! FIFTY FEET! He held the walker and went. Everyone who saw us stopped with their jaws to the ground and exclaimed, Look at Parker!

Martin stayed up front with Parker, I followed right behind him with the wheelchair and when he said he had walked as far as he could, he sat down in the wheelchair and we wrapped him up in a blanket and pushed him OUTSIDE to the courtyard off the third floor! OUTSIDE in the fresh air!

When we got to the courtyard, Parker tilted his head, looked up at the sky and let silent tears fall. He didn't have to say anything, both Martin and I knew what they were for. He asked to be pushed around near the plants, so we walked around the entire courtyard and stopped at the statue of Elizabeth Ann Seton (as in Seton Hospital) for a photo shoot.

It was enough to wear anyone out, the emotion of it all. But as we started back, Parker asked Martin if we could go to the ICU. He wanted to see it again, and he wanted to see Yonus. Talk about an emotional journey.

We walked The Green Mile and I explained to him why I called it that. We rounded the corner to his room, and it was empty. Yesterday afternoon there was a Code Blue called to ICU-A and I had a horrible feeling it was to the room he had been in for those 6+ weeks. I didn't ask, but the room was eerily empty. Spooky. Parker looked at it, dropped his head down and cried some more.

We went to find Yonus, who was in a different part of the ICU. There were two "issues" going on at the same time, one in the room where he was working. We saw Brittany and she went to get Yonus. He told us later she said, "Yonus, Parker's back!" He thought she meant back in ICU, but when he saw us in the hallway his face lit up in that fabulous smile that only belongs to him.

Parker cried some more when he came out, and told him he'd wanted to come down there to see where he had been so sick for so long, and also to see Yonus because he had been so significant a player in his recovery. Yonus put his hand on Parker's shoulder and said, It is so good to see you, Parker, you look so healthy!

That was about all the ICU any of us could take. I'm not sure how I lived down there for so long with out going nuts. Or maybe I did go nuts and no one told me yet. Parker wept the whole way back.

I can't believe I was in that place for so long, Mom. I can't believe I made it out of there. That room .... those hallways .... those sick people, was I that sick???

Going down there today made it clear how far we have come. How far Parker has come, how hard he has worked, what he has accomplished. I thought about those weeks when he lay on one of those beds like a big lump, unconscious, kept alive by machines and people whose hands I had to trust to care for my son, to save his life. Those weeks I lived in the ICU waiting room, waiting for him to come back to me, when I turned his life over to God because that was all there was left to do.

Thank you God, for not letting me down, for letting Your will be the same as mine!

Now he is sleeping in his big, sun filled room on the 4th floor. He has slept since we got back, his head tilted off to one side, his NG tube falling out of his nose a little crooked, his SuperHero pajama shorts on, and the beep, beep, beeping of the machines hooked back up to him.

There is much more for me to write about the feelings of today, but right now I have to rest. And absorb. Then I'll write. Parker insisted on my putting up the photo of the two of us. I told him in the other photos, he looks like a convict and Martin looks like the prison guard. We laughed about that because when he took his first steps toward the hallway this afternoon, at the start of our journey, he looked at me and said, Mom, get the truck!

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!

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.

Best Day Ever!

Wow! What a day! First, after my super-spoiled afternoon yesterday I slept in this morning until 7:15am. I knew that Monica had been his night nurse and Yonus was going to be his day nurse again today so I felt okay not getting there before 6:am as I usually do.

Here are the highlights of the day, bullet-pointed as my brother suggests:

* I saw, with my own eyes, Parker's heart rate go UNDER 100 several times throughout the day. There was a time when getting down to the 130's was huge, but he is getting close to a normal heart rate now. So sweet. I took a photo when it was at 111, thinking that was going to be so super-duper, but later on James and I both watched as it fluttered down to 99, 98, 97.

* We had Yonus as our day nurse, so I knew he was going to be cautious and do everything in Parker's best interest. Some of the younger nurses will only do exactly as written by the doctors, so the other day when Parker's stomach kept getting bigger and bigger and bigger, the nurse wouldn't stop the tube feeding until she had reached the doctor and he said to do it. They are afraid of the doctors. Yonus is so capable and has over 20 years experience as a nurse, and he knows what the boundaries are but also knows his job is to care for the patient, not massage the doctor's egos.

* Yonus was concerned about the bed sore on Parker's back, so he called the Wound Care PT people and the woman came, took a photo, put the cream on and actually showed us the comparison to the last photo. It looked better! But see? Yonus wanted to be sure, so he wasn't going to wait for them to come around the next day, he took action. That's why he is so good.

* Parker was more alert today and rarely needed any extra pain medicine. He said he really liked having a clear head. We talked about so many things. He had a few moments when he got very emotional and he couldn't understand why. Personally I can't see why he doesn't get it, anyone would go crazy after what he has been through! But Yonus explained to him about ICU psychosis, which happens to people who have been in the ICU for a long time. Especially when they have been without a window, like Parker has been for 5 weeks now.

* Yonus encouraged Parker to talk and to cry and to feel everything he needed to feel. At one point, when Parker was sleeping, he woke up crying and talking about missing the sounds of family. He got weepy about lost loves, and again when he read cards from old friends from Maryland (cards that have been sitting on the shelf, waiting for a day like today when he had enough strength to hold them in his hand). I think because he was so clear headed today and is beginning to be able to realize what has happened, and what almost happened, over the last two months, it is pretty overwhelming.

* James sat next to Parker's bed for most of the day. When Parker slept (which wasn't much) James read his book. When Parker woke up, James put the book down and they talked about all the things that they talk about that I don't get. But I sat in the other corner with my eyes closed, just listening to the sound of my sons talking to each other, and I thanked God for that gift.

* Parker practiced with his passe meir (not ver as I wrote before, sorry...) valve and then we made a BIG phone call. We called my parents. I know what it meant to them to hear his voice, and I was really happy he was able to do it, it takes so much energy. My Dad said afterwards that I was to tell Parker This was the best day they have had since the Cowboys won the Super Bowl! That, of course, is a little inside joke.

* Parker had his NG tube capped off for several hours today and they resumed a minuscule amount of tube feedings. I wasn't crazy about the idea, I don't want to risk anything like what happened the other night, but I knew having Yanos on guard meant nothing bad would happen, he would turn it off if and when it needed to be turned off. AND he would do all the little things he knew to do to check and make sure stuff wasn't building up in Parker's stomach.

* We found out that the reason he is always so thirty is because of the anti-fungal medicine he has to take for the nasty yeast infection. When the NG tube was suctioning today, Yanos let Parker have water (since it was just getting sucked right back out), which made him SO happy.

* Parker sat up on the side of the bed again today. It takes a bit to help him up because he has no abdominal muscle strength at all, but once he was up he sat unassisted for about 3 minutes again before it hurt too much and he had to lay back down. But every time he gets up, it works the abs and the gut and moves him towards everything working again. It was great.


* No fever, no more lasix and no apparent swelling, he is off all antibiotics (except the antifungal for the yeast), the ultra sound people came and checked his legs and found no evidence of blood clots, he had good gut sounds, got grumpy at times, laughed at other times, and we all smiled a lot today.


* Rumor has it we still might be moving the the Intermediate Care Unit on Tuesday. I am elated and terrified at the same time.


Today I was standing outside Parker's room when an old man was wheeled by on his bed. A get well balloon was tied onto one of the railings and floated along with him. The man must have been 100 years old. Maybe more. I smiled as he passed by and he reached his other hand out and said, Hey I'm graduating today! Can you believe it?