Survivor

I should have known I am too old to live in an apartment with 3 college kids, one loud cat and a dog who is apparently not house trained, even just for 72 hours.

Parker's roomies have no sense of courtesy. 4:05am this morning they were STILL going from bedroom to kitchen and back, yelling to each other about who ate the last of the pizza and why'd the dog get into the trash. At 4:05am thank you very much. Then something made me sick. Every time I threw up I thought of Parker and told myself to toughen up. I'm pretty sure I am over my fear of throwing up.

Other than allowing myself the luxury of laying in bed all morning, clicker in hand, watching a really good tennis match at the French Open, I was pretty miserable over there. Since John is staying at the hospital anyway, I came back to the room at the League House for the rest of my "vacation."

Parker had a rough afternoon yesterday, and even worse night, and the worst morning in a long time. They had the short N. nurse last night, the spazzed out woman who tried to stop Dr. Morrison from taking him to surgery until she could give him a bath. I told John to watch out for her, to be sure she didn't get near Parker. He found out why when Parker threw up all night and was choking on the stuff he'd aspirated through his trach and she wanted to measure his urine output while John was trying to clean out the trach so he could breathe. Then she was stupid enough to ask John how she measures the urine, was it this number or that one? What a dumb*%&#.....

His pain level had become unmanageable, and this morning one of our favorites, Nurse Sherrie, discovered that the iv line for the Dilauded had a leak in it. No telling how long it had been that he'd actually had any pain medicine, but it apparently had been like that all night. We love Sherrie. She rode with Parker in the ambulance the day he had to go to Round Rock for the CT scan, the day he went into shock and had to have his first surgery. He still remembers how she held his hand and let him lean against her in the ambulance.

On top of the pain, his digestive system is still fighting him, and when Lindsey came for Physical Therapy today it was a nightmare. The doctor came in and said something about the NG tube and both Parker and John burst into tears .... Parker will do anything to not have that NG tube put back in because he thinks they will tell him he can't have water. The doctor re-read all the notes and discovered the problem with the pain meds, and also saw that Parker has been able to get some things past the ileus, so she changed her mind and upped his meds again to give him comfort. Whew! Saved by the diligence of a thorough nurse and a compassionate doctor who took the time to find out what other reasons might still be making him throw up.

His belly is huge, swollen from the ileus and gas and water that is accumulating on his abdomen. They've put him back on Lasix and upped his iv fluids, too, in an attempt to get it all straight. I haven't seen the kidney doctor for days, but Parker's BP is also higher than normal again, probably from the fluid retention.

When I got there today to deliver his lime and cranberry juice, he was working with the OT guy, Eric. Even with all the pain he'd been in, all the throwing up and diarrhea, Parker still wanted to stand, wanted to walk, and tried his darnedest to get to the chair, but couldn't because he was so exhausted. Eric told me he was really impressed with him, after everything he'd been through over the last 24 hours that he was still pushing himself.

Then the wound care guy showed up to change out the wound vac. That always causes Parker more pain (if I thought you had the stomach for it I'd show you a picture) and he hates having it done. But Parker is having company tomorrow. His aunt and two cousins are coming to see him and he is so excited about it he doesn't want to be in pain or miss out on any of the visit. So when the wound care guy offered to come back tomorrow because of how difficult the last 24 hours had been, Parker said no, let's get it done now, get it out of the way.

I already hurt, might as well get it over with so I can see my family tomorrow when they come.

I was mighty proud of that boy. Eric, the OT guy, was standing outside the room with me when we heard Parker say that. I looked at Eric who shook his head and said,

It doesn't surprise me, Parker is an inspiration to all of us in Physical and Occupational Therapy. He's got more pain, but also more courage than all the other patients on this floor put together.

That, Parker, is why you will walk out of this hospital someday on your own two feet! You're tough, a survivor, like the bison in the photo.

72 Hours!

I have 72 hours to call my own. Wooo-Hoooo!!! John is here for a few days and is staying at the hospital with Parker. I slept at the room in the League House last night for the first time in almost a month. It was weird and I wasn't sure how to sleep on a real bed anymore.

After checking in this morning and talking to the doctors a bit, I am now at Parker's apartment with big plans between now and Sunday morning. I am going to: research agents; edit some more of the book; sleep through the night THREE TIMES; watch the French Open; have a bubble bath; eat chocolate (oh darn! I forgot the chocolate!!!); visit a friend; sleep some more; edit some more; watch the Belmont for a lot of hours on Saturday afternoon; and with any luck.... NOT worry!

Parker is moving forward with great progress. Little concerns about his edema and the amount that has swollen his abdomen even more, but they gave him a little bit of Lasix yesterday and might again today. The concern is that his blood pressure is up slightly as a result. But I am trying not to think about it.

I had an email from a friend yesterday who told me James had expressed concern for my welfare, for the fact that I live in that hospital room and sleep in the chair and don't eat well. I love him so much for that concern. A part of me feels a little guilty that I can walk out of the hospital for a few days while Parker is still unable to get up and walk out himself. Don't worry, a couple of good nights sleep will get me over it.

For then past two days Parker has walked twice a day, and has started sitting in the big chair, trying to get used to being vertical. His equilibrium is all off now, and he gets dizzy quickly. His muscles are weak and he feels like he started two-a-day practices three days ago after a summer of lounging in his pajamas. Meaning he is sore. But! He's alive! Sore = alive and thank you God for that blessing!

The picture is of bluebonnets and indian paintbrush, both native to Texas and abundant in the spring. I put the picture up because it is of a meadow, and my goal in life is to live in a meadow. The picture is a gentle reminder to keep my eye on the prize.....

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. :-)

Journey From Dark To Light

I'm so sorry....

Those were the words Dr. Morrison said to me one month ago today, trying to make me understand I was losing Parker.

Never in my life will I forget the look on his face. He does this all the time, it is his chosen career. But I could tell in the way he shifted his eyes back to his mobile computer screen for a brief second, and the flash of his face when he looked into my own eyes, that he was using every bit of his professional training and years of practice to remain emotionally removed.

I can't venture much further than that at this point, I'm not ready. The only other thing I want to add right now is that there is nothing in life that can prepare you for that moment, for those long, agonizing hours, while you wait for your child to die. Nothing.

But look! Here we are, one month later, and the news of the day is that Parker will be moving upstairs to the Intermediate Care Unit sometime next week!!! WE MADE IT!!! Let me quickly take that back and say WE MADE IT SO FAR!!

Dr. Weingarten (Dr. Morrison's replacement) said he wants him off the Lasix drip and only getting the diuretic injections before we move upstairs. He wants him off the insulin drip. He wants the speech therapists to come and put a new type of valve on his trach tube that will make him breathe in through the tube and out through his mouth and nose so he can start speech therapy and learn how to speak again. He wants him to be able to sit up on the edge of his bed, unassisted, for at least 5 full minutes (no leaning against anyone), and he wants to be sure his bowels are working. Then we can make the big move upstairs.

It has been a long month from the darkness to this light I feel today. but what a wonderful feeling, to know he is passing from the critical stage toward wellness. What a true blessing.

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?