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!

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.

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. :-)

Phoenix!

So many people came by today, looked in Parker's room and said, "Oh my God, what a difference a few days make!" Nurses we've had before, respiratory therapists, pharmacists, physical therapists, cleaning crew, doctors who are not part of Parker's team, the Social Worker .... So many people who cannot believe how Parker beat the odds time and time again. One person said to him, "You're a legend around here you know!" The surgeon walked in tonight and said, "I thought I was in the wrong room for a minute!"

Parker made great strides this weekend. He sat up again today, unassisted, for 6 minutes (meaning no one balancing or even touching him, all on his own!). His guts started working and the NG tube was capped off, the tube feedings started up again, without - so far - any bad effects. He still has horrible thrush in his mouth (part of the yeast infection from the picc line), so badly that he begs for water. Until late this afternoon he was only allowed ice chips.

Parker has had a highly emotional few days. Nurse Monica told us he will have to go through a grieving process, like he is in mourning. And the more he discovers about what happened to him, the more emotional he gets. We have been instructed to be honest with him when he asked questions, so last night when he asked James what the worst part was, James told him it was the two times they told us we were losing him. Parker was stunned by this news. I had sort of told him already, but he was more sedated and doesn't remember. James called and asked me to come back over to talk to him, which I did.

Typical of his sensitivity, Parker's main concern was that I had to go through that, to be told he was dying and to be here all alone when it happened. His heart was breaking at the thought. Somehow I was able to stay calm and collected when I talked to him late into the night about everything, even though I personally haven't been able to deal with it myself. It is amazing what we will do for our children. After some more discussion, we agreed that the best next step was for Parker to have an appointment with Dr. Burg, the hospital psychologist.I am his mother, and I'm too close to his pain with my own agony to help him effectively. Or without terrifying him even more.

There is so much to do. He still has so far to go. But his body is healing. His spirit is as strong as ever. He has visions of returning to work someday, of walking to his mailbox to collect his mail, of taking a shower in his own bathroom and waking up in his own bed. Of driving his car, and sending an email. And of calling me to say, Hey, I'm on my way to work, Just checking in. How are you?

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?

A Little More Lucid

As Parker comes off the Versed he is more and more aware of his surroundings, what has happened, how long he has been sick, and what lies ahead in the weeks and months to come. It is equally distressing to him as it is motivating.

He wants me to talk to physical therapy and find out what we, meaning he and I, can do together in between physical therapy visits to start to build his strength back up. He wants to know exactly what has to happen before he gets the NG tube out and can hold his own cup of water, rather than my holding it up with a straw for him to sip. He always wants to be sure his boss is holding his job for him, and he wants to know what he has to do, or not do, so he won't be restrained anymore.

Last night, by mistake, he pulled his feeding tube out. He is so upset with himself this morning it was sad to see, like a naughty puppy who went too long without being let out and had an accident in the house. I assured him no one was mad, John (last night's nurse) wasn't mad, I am not mad, no one is mad. He pointed to himself and said, I am mad! I broke a promise!