Off Course!

I'm probably too tired and cranky to be writing right now, but I don't know what today will bring so I want to get my thoughts on paper (or blog) before it all becomes part of the maze that has taken hold of my mind.

Parker's surgeon, Dr. Garcia, has gone away to visit his daughter for Easter, so his associate came in this morning. Dr. Associate said his instructions were to get through the weekend safely, the big goal being to remain stable enough for the CT scan on Monday. So the tube will stay in, Parker can still have ice chips and the occasional sip of water and that's about it. No chicken broth for Easter dinner.

Dr. Turner is the internist in charge of Parker. He looks so much like the Turner's in my family, sort of a combination of Turner Smith (my Aunt Peggy's son) and Max Turner, my brother's son. I wanted to ask if he were related to the Baltimore Quaker Turners. Didn't get the chance and now he is gone on vaca for a week. Vacation? Excuse me? Who does that?

Dr. Turner came yesterday while I was at Parker's house doing laundry, getting a shower and trying unsuccessfully to take a nap. He told Parker that he is very pleased with the change of direction, especially for someone who came in so critical only a week ago. He wouldn't say "out of the woods," but he did say changing course and hopefully going off in the right direction.

In the equestrian world, going off course is a bad thing.

I have to pause for a second to say that Parker is currently writing something in the air in his sleep. I asked him what he was writing and he said he was writing on top of cupcakes. I asked him whose birthday it was an he said it wasn't a birthday, but rather that he had just won top prize on America's Greatest Chefs. That's my boy! Shoot for the moon, even if you miss you'll land among the stars! :-)

I wish for the narcotic oblivion myself at times. The constant beep, beep, beeping of machines everywhere are like Chinese water torture. Every time the nurse leaves the room one of his machines starts beeping. I can either go out in the hallway and be a nuisance (I have discovered that at 2:am this often means breaking up a little coffee and pastry party the night nurses hold in the halls) and ask that they come back and fix it, I can try to figure out what it is and fix it myself, or I can wait till someone hears it.

In the beginning the noises were alarming, but it happens so often now, at least 15 times a day, I have come to know which beeps mean his blood pressure is too high vs he is laying on the tubes attached to him again and they have to untangle the jungle. Today's nurse told me that because Parker has so many attached to him, about 75% of the time it is because he has shifted his arm and is laying on it funny. She says this with a look of practiced patience, but my own patience is tested when I wonder why they don't have a system to keep that from happening. Surely he isn't the only patient who has thirty thousand wires, tubes and clips attached to him!

Last night for the second night in a row there was no sleep to be had. In the middle of the night they strapped Parker's arms to the bed rails because he kept trying to pull out the NG tube. They had to tape it back onto his nose three times and he now has tape stretching from cheek to cheek.

Next he started with the bed thing. I swear these narcotics might turn him into Rain Man. He raised it up and lowered it down, raised it up and lowered it down, raised it up and lowered it down, squeek, squeek, squeek, rattle, rattle, rattle, clamp, clamp, clamp. I tried to drown out the noise, but after 15 minutes I turned and snarled something at him.

"Sorry," he whispered. "I hurt." Guilt.

It started again, but this time the top half of the bed was going back and forth, back and forth, instead of up and down, but I couldn't say anything. I'm not the one living minute by minute trying to avoid physical pain.

It is Easter weekend. My brother Craig reminded me of how hard it must have been for Mary to endure watching her son be crucified on the cross until he died. Hers must have included a horror I can't even imagine, but what I do understand is that she would have traded places with him in a heart beat to spare him the pain. Of course she couldn't, neither can I. But as much grumbling, moaning and groaning I have done, I would.

I'm going to see if I can find a local Quaker Meeting to go to tomorrow.

Good Friday

Dr. Garcia just came in. Parker's vitals are a lot better, which is fabulous. We will clamp off the NG tube again and see how he does this time. Ice chips are okay, SMALL sips of water, but what he really wants to know is how the stomach reacts to its own creation of acid, uncomplicated by the addition of water.

Dr. Garcia said he will get the CT guided biopsy set up for Monday and if Parker remains stable we will get that done then. Yea!!!

Last night Dustin (Parker's boss), Jamie and Voltaire came from Parker's office to visit. He prepared for it all afternoon after the "seizure." He wanted to be rested. It did his heart a world of good to see them. They came late, but Parker sat up in bed and was able to converse with them for almost an hour. He drifted in and out of sleep, but even told them a few jokes. It was one of the best therapies he could have had.

Voltaire is Parker's friend and Dustin's roommate. He was raised in Houston, went to Belaire High School. We talked a little about Houston. He wants to start up a band with Parker when he gets well, so I will send down the keyboard for them in a few months.

After they left we had a VERY busy night. Our Nurse was called Joy, she is a cute cheerleader type girl who did a mission in Calcutta for her church and volunteers as a mentor for the teenagers. She's only 24 but was remarkably mature, well spoken, thoughtful and very spiritual. We really liked her a lot. She wants to go back to Calcutta to work someday, said even though she was a little afraid (couldn't go out at night, etc) the people were welcoming and grateful for her help.

The nurse assistant was called Red. He was about 6'6" tall with ~ of course ~ shocking red hair. He was quietly flamboyant and is reading The Shack for the 2nd time. He told me I stopped reading it right at the part where it gets so good you can't put it down, and that it gives formal religions a big kick in the ass while being sure, at the same time, that the reader can only come away with complete acceptance of spirituality and God. He left the book for me to read today, he'll be back tonight.

Parker asked me last night if we had a video camera. I said no and asked why, and he said it occurred to him in one of his dreams that he wanted someone to record the events of his illness as he is too sick and is sure he won't remember most of it. Not to worry! I told him about this blog and he was quite pleased. I started reading it to him today, at his request, until he fell asleep. He wants me to read the whole thing to him later, and said he was glad I was capturing the humorous moments, too, because he was sure we would need to remember them.

Martin, an eastern European physical therapist, is here today to start working Parker's muscles since they are weakened from laying on his back for a month.

Today is Good Friday. They will be very busy at work, but they are such a great group I know they will rise to the occasion and shine. My wonderful, cohesive co-workers. :-) Thank you for being there for me.

I am hoping Parker and I will get to celebrate Easter by his getting a few sips of chicken broth. That's what he is hoping for. Funny kind of Easter Egg!

What More Can One Day Bring?

Rather than go to Parker's apartment to do laundry and have a shower today, I sat by his bed with my heart in my throat fighting back the tears as I watched him sleep. Early afternoon he had what they are calling a "non-neurological" narcotic related seizure from all the morphine and diladin (sp?) that he is on.

I had been writing a query letter to an agent about my book, remarking in my mind about how peaceful and quiet Parker seemed and how long he had slept without getting agitated (about 45 minutes) when it happened. To describe it isn't necessary, but if you have ever seen anyone have a grand mal seizure, it was very similar to that. The difference being, although he was unresponsive to me during the episode, once the Critical Response Team came he was able to snap out of it completely.

But let me tell you how scary it is to be the parent of a patient who has the CRT people running down the hallway. Parker came to with 7 people standing over him, most he'd never seen before, shining flashlights in his eyes (which had rolled back during the episode), running here and there, bringing in noisy equipment, asking him crazy questions, and with his mother standing in the corner trying to stay out of the way, trying desperately to look like nothing was wrong, but in truth being the same shade of green as the contents of his stomach.

All afternoon when he would wake up out of his drugged sleep, he would tell me with his dry, cotton-mouth speech about the people in his dreams who are also in the hospital and who also can't figure out how to fix what's wrong so they can go home. Some of them are NFL players, others are characters from SCRUBS. When he is awake he knows they are not real, but says that when he is asleep they all talk about how everyone else thinks they are not.

I think we need to find an alternative to narcotics.

This picture is the view from the hospital room. I just thought the clouds were especially interesting today.

And One More Forward

Parker's surgeon, Dr. Garcia, said that even though they had to back track and unclamp the NG tube, if Parker's heart stays stable enough between now and Monday he'll get him to the other place for the CT scan!!!!

This afternoons mission: get him up in the chair as long as possible. He is also ordering physical therapy to come work with his limbs some so they don't atrophy from having to lie still for so long.

Progress????

Older Post Links

I started writing about Parker's illness, and those first two weeks in the hospital, on my own personal blog. If you are interested in reading from the beginning, here are links to the earlier posts:

http://leapoffaith77.blogspot.com/2009/03/when-your-child-is-ill.html
http://leapoffaith77.blogspot.com/2009/03/let-freedom-ring.html
http://leapoffaith77.blogspot.com/2009/03/home-is-where-heart-is-and-other-happy.html
http://leapoffaith77.blogspot.com/2009/03/caretakers-profession.html

Two Steps Back

After our really good day yesterday, we took a step back. Maybe two steps back. Maybe it was my fault. I hope not. There is a lot of guilt tied up with helping a sick child.


They had to unclamp the NG tube and start suctioning his stomach again because he threw up this morning. He was craving water ~ his lips are peeling with big flakes of flesh hanging off his mouth, his tongue is swollen and cracked and he is afraid it will block the back of his throat and he'll choke to death. So I asked if he could have little sips of water instead of just rinsing out his mouth with miniature sponges on sticks that look like lime green lollipops. Then he would beg for more water, his eyes pleading, and I let him have bigger sips of water. Eventually he convinced me that he didn't want to have to wake me up all night when he needed water, so why didn't I just put the glass of ice water on the table next to his bed?


I was so tired, and probably deliriuos myself, so I did it. This was about 3:am. At 5:30 I woke up and he had just had more projectile vomiting. Nurse Robin said he had the water, the whole cup at one time, and immediately threw up. :-( Guilt.


They hooked the NG tube back up to the suction thing and within an hour it had come apart and bile was all over him and the bed. Second sheet change and bath within 1 1/2 hours. He looked at me with shame, humiliation, fear and sadness.


"When will this be over?" he whispered.


Shortly after the respitory therapist came in to do his breathing treatment, Nurse Bronwyn started asking Parker questions. He was in his usual state of morphine delirium, which concerned her a lot. Especially since his breathing his labored and he has some wheezing. Remember, we don't want wheezing? As she was talking to him and listening to his rambling answers, he started having chest pains. Ugh. Add one more thing to the pile.


We are taking him off the morphine (thank God!), putting him back on Dilatin (sp?) which did help him rest more at the other hospital.


On the good news front, no more blood on the little test kits (yea!), his heart rate has stabilized (still very high, about 130, but not shooting up to 150 qnd 160) and the nurses said they wanted to hire me. Which was REALLY good news because it means they won't throw me out.


I love you Parker. I miss you James.

Beyond All Creatures ... Thee

John left today to go back to MD. He will be back and forth over the time Parker is in the hospital, and is planning to come for a more extended stay when I finally go home. I felt so sorry for John, it must have been so hard to leave. He cried quite a bit.

All three doctors were very pleased that Parker had a good night. They clamped the NG tube to test and see if his stomach would process the regular acids and bile without causing him to throw up or have more pain. No throwing up, and we cheated and let him have water, but only because we measured every teaspoonful and gave the count to the nurses so they could account for it when they suctioned the stuff out of his stomach later.

His mouth and tongue are so dry and cracked, I can barely understand what he is saying when he tries to talk. We keep lotion on his lips and tongue at all times. He has begun to have more pain (oh those 18 almost pain free hours were like a tropical vacation!) and I suspect I might be in for a long night.

In addition to the regular back and left side of the stomach pain, his tailbone has started to hurt, which is a sign the skin is beginning to break down and he could get bed sores. Twice today he asked to turn onto one side, which was progress because I didn't have to force him. But tonight he is experiencing more pain again. Ugh. Everything is driven by this need to be pain free.

He also had more scary hallucinations today. After it was over, he coached me on how to handle it next time. I thought it was very interesting, because he obviously understands when its a hallucination, and he knows what will make him relax and knows that it won't be over until it is over. No amount of my telling him he is hallucinating will make it stop, it only makes him more agitated.

These big hallucinations, like the really, really scary night in the other hospital, are different than the constant mumbling and conversations he has in his sleep. Most of the time he converses with his customers at work. I have learned the secrets to GM's success in their customer care department just by listening to him talk. Don't worry GM, I'm too tired to remember.

Tonight he is preaching in his sleep, like the best Sunday sermon I've ever heard. He's teaching about the value of family and how to achieve harmony and balance in your life and in your relationships. If I didn't know better I'd think he'd been listening to some Joel Osteen tapes. :-)

Dr. Garcia, the surgeon, said today that at the end of the week (presumably Friday?) he will have his next MRI so they know what kind of progress/decline is being made. For now I hope for a restful, pain free night.

I stole the following poem off a friends blog. I hope she doesn't mind, but these very same thoughts have been on my mind ever since my mother told me my father prayed for Parker. Although he is a gentle, Quaker-like man, my father is a scientist and has had trouble taking that leap of faith. The fact that he prayed makes me know he is beginning to understand the truth. For that I am so happy, and for that I have stolen Alison's poem.

Lord, purge our eyes to see

Within the seed a tree,

Within the glowing egg a bird,

Within the shroud a butterfly:

Till taught by such, we see

Beyond all creatures, Thee...

~ Christina G. Rossetti

Yin and Yang

Last night was the most restful Parker has had so far. We asked his nurse, Casey, to do all his stuff at 10:pm and then to leave him alone as much as possible so he could rest. Besides the NG tube coming loose and spilling bile and stomach fluids all over him and the bed (which involved a 2:am sponge bath and change of linens), he had fewer interruptions, needs and pain than any other night since we've been here.

This morning he was using a Q-Tip to clean his nostril out where the NG tube is placed. He kept drifting off to sleep during the process (morphine) and the Q-Tip would fall near his mouth. I tried to pick it up and help him and he said, "Only I am allowed to put sticks into my nose, so unless you work here and are paid to do it, don't touch!" :-)

It's good to remember the humorous things that happen. For balance.

"This Was a Big Day!"

Those were Parker's words tonight. This was a big day. And a very scary day. But as I write this, it feels for now it will end on a good note.

Nurse John apologized for the comment he made about the heart damage. It was in a different chart. Thank God, because everything that can go wrong, every side effect something can have, every twist that can happen makes Parker's case a little trickier.

During the night Parker started wheezing. We don't want wheezing. In fact, apparently we don't want wheezing so much that the night time on call doctor, a tall, graying blond guy who thought he was very cool (but wasn't) decided to take Parker off the Toporol, the medicine for his high blood pressure. Wrong.....

All morning Parker was in horrible pain, twisting and screaming and yelling. He even had a few choice words for John and I.

I remember when my sister-in-law, Liz, was having her first child, Emily. This was before the days of epidurals at 2 cm's, this was when you had to bear with the pain for hours and hours before relief could come. Emily was born at St. David's Hospital a few blocks away from here. Liz was in such agony, but she is a good New England girl from VT and good New England girl's from VT don't expose their raw emotions, even the pain of giving birth. So whenever the nurses came in the room, my brother Michael was sitting in the corner facing away from Liz, like a kid in time-out. He said afterwards he was sure the nurses thought he was the worst husband/father-to-be in the world, but what they didn't know is that the minute they left the room, every bit of pain Liz felt spewed out of her mouth, venom filled words for the man who had put her in that predictament. We always got a good laugh over that.

So when Parker was nasty to John and I today, we understood. If he only knew that we would so much rather endure this pain ourselves than watch him go through it ~ but it is impossible to explain that to someone who has never held their own child in their arms.

After the doctor finally changed the order for medication, Parker started hitting the morphine pump every thirty seconds. It will only allow him to get a hit of it every 15 minutes, but I suspect pushing that little button has a placebo effect.

Later in the morning, during his most intense pain (which has now spread to his back) his blood pressure shot up. Like, to 201/178. Yes, that's right, 201/178. So they took it again. It was 198/164. So they got a new cuff and did it again. It was 184/178. I've never heard of anyone with blood pressure that high. The nurse didn't wait for orders from the doctor, he gave him a shot of something to bring it right back down and then called the doctor.

I was pretty hysterical at that point. Not outwardly hysterical, but enough to where I had to go to the bathroom and throw up. In this type of emergency you can't let your emotions out except in private. It hurts your child, so you don't do it.

However, I wasn't so calm that I didn't ask the nurse to explain to me what our rights were as the parents. We wanted SOMETHING done! Anything that would give us an indication of what was happening inside Parker's body. We understand they don't want to transport him to do the CT guided biopsy that has to be done at the other hospital. He is too sick, they said yesterday. He can't be moved that far at this time. But across the street he had his MRI done last Thursday, and we wanted another one done. Couldn't we just say we wanted it done and get it done? What do we know, we are only the parents? What we really want is for our son to get better.

My asking about patient rights brought both the doctors to see us at the same time. I will remember that because it made a HUGE difference in how we felt afterwards. They conferred, we had discussions with both of them, and in a nut shell here is what they said:
We have to be patient and wait this out. Parker's case is especially complicated for many reasons. One is, everything they do, whatever kind of bad side effect that a treatment might have, he gets. The domino effect.

The other main problem is there are multiple cysts on the pancreas, and the biggest one ~ the one causing the most trouble ~ is ten centimeters big! That is so HUGE! The pancreas is about the size and shape of a small, flat banana. That cyst sits right against the duodenum at the opening of the small intestine. Not only does that create more pain by its location, but it blocks the path any food takes (which explains why he was throwing up his stomach bile every hour to hour and fifteen minutes for a day and a half) and adds greater risk of infection. We do NOT want an infection! That would force them to do surgery prematurely. We are a bit frantic about watching his temperature.

After the high blood pressure scare and the two doctor conference, things settled down a bit. I asked for an anti-anxiety for Parker when the pain was getting him agitated and it calmed him down enough that he slept about 1 1/2 hours straight through. That was big!

I left to go to his apartment for a while, to get a shower, wash clothes, take a nap, everything I knew I would not be able to do easily once John left to go back to MD tomorrow. John will be back and forth, but for now he has to return. I feel sorry for him. I can't think of anything that could happen, except if something happened to James, that would take me away from where I am right now.

While I was gone, John called. Parker's temp had shot up over 102 degrees again. 102 degrees is the magic number we have been told would indicate an infection might be brewing in the cyst. It is the number we don't want to hear, more than anything. I threw my still-damp clothes into the car and raced back to the hospital. By the time I got there, the temp was back to normal. No explanation, it just went back down. Thank you God for hearing my prayers.

This evening they brought Parker a new bed, one that has a trapeze type pole hanging from the rafters so he can pull himself up. He is in so much pain it is hard to encourage him to sit up, so they thought this might help ease the pain a little and keep him upright with less of a chance of developing pneumonia. Please, no pneumonia.

After all that changing of beds was over, Parker settled in and seemed more comfortable than I have seen him in an evening since he got here. Let's hope it is a good night. While I was at his house today I had a discussion with God. He told me Parker has work to do for him here, He isn't ready for him yet. I will carry that thought with me as I go to sleep.

One quick footnote to add a little humor to a long, rather dreary blog. Parker talks constantly in his morphine induced sleep. Tonight he said, "Do we have to make this a reality show? Can't I just get better in the hospital without all these other people watching?" He also said something nasty about rednecks, but I can't repeat that..... :-)

Wonderful

Todays nurse just told us he saw written in Parker's chart that there were "fibrotic changes' to his heart, indicating a previous heart attack. I have a hard time understanding that when no doctor has ever mentioned anything about a previous heart attack. Will definitely be asking about that as soon as doctor gets here.

A New Day

Sometimes it feels like there may never be "normal" again. I know Parker's life will never be the same.

The doctors have speculated that there has been something going on for many years which has contributed to his weight. Something wasn't getting processed correctly because there is no way this kid could have thrown up as often as he did from age 14 on and not been thin as a rail. Unless there was something wrong. But that is for further investigation later on down the road. Right now we are still at one-day-at-a-time. Well, really it is one-minute-at-a-time.

We had a pretty good night. John went to Parker's apartment and I stayed here. John will leave tomorrow, unless something comes up with the new doctor and they want to do this procedure (I'll explain later). John was so tired last night he had a complete meltdown. It's easy to do when you watch your child go through this and listen to the doctors speculate about his prognosis. Parker wants that nasty NG tube out so badly, he begs us with his eyes to get it out. I told him I had to have one once, when I was a teenager and drank too much at a party. I had to have my stomach pumped through a tube up my nose and into my stomach. Nasty, but mine didn't last long, I didn't have to have it taped to my nose and going down the back of my throat for days, maybe weeks. Besides, I had the benefit of being intoxicated and age 16 when they put it in.

Throughout the night Parker would get comfortable, I'd get all the lights turned off, the curtains drawn and the door closed so the room was as dark as I could possibly make it. He would rest for 15 minutes, then the pain in his back shoulder area would start again. Or he would need more ice chips (which I am not supposed to give him in the abundance he asks for, so I have to let him get mad at me as I drop one tiny chip into his mouth ~ there are moments when I am pretty sure he hates me from all this). Or he would need to raise or lower the bed because his back hurt. Or his stomach would start cramping which brings on the screams. Or if he was really resting, no doubt the nurse would come in to do something.

In the middle of the night we had to call the doctor and have his pain meds changed again. He has a patch which is supposed to be the best thing ever. Plus he was on a continuous drip of morphine in addition to the ability to pump it himself every 15 minutes. They took away the continuous drip, which meant all night he would wake up every 15 minutes and have to give himself more. That's why we called the doctor at 1:am to get that changed. We are now back to the patch and the 4 mls of morphine IV every two hours.

Doc said that's a hefty dose and to watch his respiration, so twice in the night the respitory therapist came to give him a nebulizer treatment. Because he has the gastric tube attached to his nose, strapping on the nebulizer was painful (everything is driven by this primal need to avoid pain) so I held it about 1/2 " away from his face for 15 minutes. The respitory treatments make his heart rate go up, so they had to give him more Toporol (or the IV equivilant) but then he started wheezing so they had to stop that. He is on so many meds I am not sure how any one person knows what he is on and why.

I think he probably got one two hour stretch where he slept. Other than that he would sleep for 10 to 15 minutes at a time, have some kind of activity/pain management, etc., and drift off again for a few. It felt like just as soon as I got my chair stretched out, my blanket untangled and my head just right on the pillow (positioned so I don't snore and wake him up) he would need something again.

When we decide to become a parent, the committment is for life, not just until age 18, or 21.

Yesterday the doctor said he is suspiscious of the results of the MRI because they didn't show any gall stones remaining. However, the blood work is showing a decline in liver function which would indicate there may be a small blockage in the Y shaped duct that connects between the liver and the pancreas (I think that's where it connects, if you look at a diagram of the digestive system and I am wrong, forgive me.... I am tired). So today we will add another doctor to the team who will decide whether or not to go in with an endiscope and take a look.

Dr. Garcia said we have to wait for the CT guided biopsy because he is too sick to move right now. That building is across the road which would require an ambulance, but they do not want to risk his heart nor traumatizing the cyst with infection or rupture. So for that test, the thing that will tell us what we all want to know, we have to wait.

The Beginning

I am writing this journal as I sit beside Parker's bed at Seton Medical Center in Austin. So many kind and wonderful people from all over the country text and email me all day, everyday, wanting to know about his progress, I thought I might start a blog I can direct people to for information.

I also think it will help me process some of the agony I am going through as I hear the doctor's say things like, "He's not out of the woods, we've got a long road ahead of us," or "This is the worst case of pancreatitis I have seen in ten years," or, "If there weren't so many complications it would be easier to treat and we could better predict an outcome." When they say that it feels like we drew the short straw.

The doctor said that Parker is malnourished because he hasn't had any food since March 8th, so they started him on IV nourishment. Its a big bag that looks like thick milk.They had discussed a feeding tube from his abdomen into his stomach, but once they put the gastric tube up his nose and into his stomach today they decided against that.

It's hard to imagine not having had any food in almost a month, but what little jello, applesauce and juice he could eat since the beginning almost always has come up. So much so that he has developed ulcers in his esophagus from all the stomach acids and bile (just one minor complication that made him anemic and required a bag of liquid iron to be put into his veins). Bile really is green, by the way. Not a pretty shade of green either.

The doctors don't want to say how this will end up, they say it could go either way. I prefer to think positive. No, I prefer to KNOW positive. Hence, the address of this blog: leap of faith 11 14 83 (Parker's birth date).

I will write from the beginning tomorrow, but tonight I have to rest.

I love you Parker.