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!

Red Badge of Courage

Just when I thought he had shown me all he had, Parker rose to the challenge before him and pushed himself past what progress was expected or hoped for this entire week. And it's just past lunchtime.



This was supposed to be one of the hardest days he has faced since coming off the ventilator in ICU. The night was long and weary, as can be seen from the post I wrote below at 4:am TX time.



This morning when Eric came (the Occupational Therapist seen in the photo) Parker got that determined-little-boy face on, stood up for a total of 10 minutes (that was the total for the whole day yesterday), PUT ON HIS SUPER HERO PAJAMA SHORTS (with assistance, but he did most of the work himself), brushed his teeth while standing, combed his hair while standing (which is tricky because reaching his arms over his head causes him to lose his balance and once he fell back onto the bed faster than Eric and I could catch him), AND marched in place!


Parker, YOU are my hero!



His reward is that this afternoon, after he does his endurance work of marching in place, Martin and I are putting him in the wheelchair and taking him out to the third floor courtyard for his first breath of fresh air since April 2nd! More photos later!

Cowboys and Courage

I cried in the aisle of a grocery store today when I picked this card up. This baby could have been Parker 25 years ago. When he was in ICU I sat next to his bed for weeks, staring at him with my heart in my throat, feeling as protective about him as I did when I watched him sleep in his bassinett as an infant.

Parker has lost so much weight, his face has an innocence to it I haven't seen in years. He has a baby face again. The nurses all comment on his long lashes which makes him blush, but I am sure he is secretly pleased. One nurse in particular.

Today was a huge day. Parker's courage continues to astound me. His determination, his will, his strength, his ability to push himself past what he thinks he can do, just a little further, regardless of the pain involved. I am in awe of him.

If you have ever read anything about pancreatitis, you know it is one of the worst types of pain the human body can experience. Every day, every minute, Parker pushes past that. He fights back, mentally throws bricks at the fire inside his belly. Today when we talked about it he said there is a song he thinks about when he feels like giving up, a song that reminds him he has no choice. The alternative is laying in bed and letting this disease eat him up, and he says that is not an option. He will fight, and he will beat it.

Today his white cell count is up a little (from 10.9 to 13) which made my chest tighten to hear. Then this afternoon he has had a very slight temperature to go along with it (99.3 under the armpit which means 100.3 regular). I am borrowing from his courage and trying to remain calm about it. The Critical Care doc wasn't concerned so I will follow Parker's lead and move on.

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.

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. :-)

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?

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?