Flash Backs

Added in May: I wrote this post the last morning of parker's first stay in IMC. Before the ambulance ride to Round Rock, brofre he went into shock, before the surgery and all the rest. This day is one that, for the rest of my life, I will have nightmares about. It was only because of two nurses, Sherrie and Allison, that the bad turn Parker took on this day didn't kill him. Thank you to both of you.

Written the morning of April 13th: A friend of mine, who happens to be an editor, remarked to me that it is hard to know what happened to Parker from reading this blog. I am going to write a brief summary of flash backs (she isn't the first person who implied there was a lot of missing information, but she was the first that spelled it out, as only an editor can, forcing me to respond). I will be as brief as possible, but I do have a tendency toward the writer's version of verbal diarrhea:

March 10th ~ About 10:pm I got a text from Parker with the following text message: "I'm at hospital. Don't call."

Really Parker? Don't call with a message like that? Actually at first I assumed he'd had to take a friend to the hospital from work. I mean, who sends that message to their MOTHER who is 2000 miles away? It wasn't until I got a hold of his friend Jamie that I knew he was sick.

Here is a link to the first post I made about it, but this is on a totally different blog I was working on before I started this one: http://leapoffaith77.blogspot.com/2009/03/when-your-child-is-ill.html

South Austin Hospital ~ Parker went in on the 10th and we left the night of the 23rd. The original diagnosis was severe acute pancreatitis caused by what they assumed were gall stones. After two weeks of resting his pancreas, his numbers were better so they felt he was okay to go home. He was to have an appointment within two weeks with an internist for follow up, then schedule an appointment to see a surgeon who could take out the gall bladder.

Friday after he got out of the hospital we had an appointment with Dr. Daghestani, who I believe to be one of the best patient-friendly doctors I've ever known. He urged us to get the gall bladder out quickly because Parker's pancreas enzyme numbers were increasing again, indicating he wasn't fixed. At that point Parker had still be laying flat in bed at home, not able to keep down applesauce or jello with any regularity.

Parker's Dad came Friday, I left Saturday, assuming Parker was going to have the gall bladder surgery and all would be well.

Wednesday Parker and his Dad met with the surgeon who asked for an MRI before planning the surgery. He had a hunch, and thank God he acted on it. Within two hours of the MRI Dr. Garcia, the surgeon, AND his office called and said to get Parker into the hospital right away! I sat tight for a few agonizing hours at work, waiting to see if it was just to do the gall bladder surgery or what was up.

When I heard from John he was quite alarmed. The hospital put Parker into ICU. The MRI had shown many cysts and lesions on the pancreas. Thank God I had my own hunch and had booked a flight for that afternoon, just in case. I was on my way back to TX.

Seton Medical Center ~ Parker came into Seton Medical Center on April 2nd with a diagnosis of severe acute pancreatitis. There are multiple cysts on his pancreas, the largest being 10 cm, which apparently is TX sized. That one also is sitting near the opening to his small intestine, blocking it and causing additional pain. Not to mention keeping it from allowing things to drain from his stomach.

The first few days, when Parker was in ICU, were hell. Well, the whole thing is hell, but that was an especially intense kind of hell. Parker had a blood clot in his lungs. Couldn't move, yet he was violently throwing up every hour to hour and a half. Critical care lung specialist came, but we couldn't have CT scan done because we couldn't move him. So many complications.

* They couldn't do this because of that, they couldn't do that because of this.

* They had him on Toporol for blood pressure but had to take him off because he was wheezing.

* They had him on morphine, but took him off because he was hallucinating to the point where he was on the verge of getting out of control.

* They took him off blood thinners once they thought the clot had dissolved because he was bleeding from his esophagus (from too much stomach acid traveling through when he would throw up).

* He had become anemic, so they gave him a bag of black looking stuff they said was iron.

* They put a tube up his nose and into his stomach because his body isn't draining the acids and bile that build up due to the blockage from the cyst.

* They tried to cap the tube twice and see if his stomach would drain on its own, but it didn't so they had to hook it back up.

* His muscles have started to atrophy from laying in bed for a month, but getting him to move brings on an horrible onslaught of pain, which can become unmanageable.

* His blood pressure shot up to 201/178 once and they gave him an emergency dose of something that sounded really scary. The look on the nurse's face was scarier.

* His blood sugar flies up because of the trauma to the pancreas, so he gets insulin injections in his belly. His whole stomach looks like the aftermath of a hurricane.

* He had a non-neurological narcotic related seizure episode that scared me to death, which is what made them take him off the morphine.

* He has had nothing by mouth since April 7th.

* His heart rate and BP go up and down, up and down. For the most part up. For instance, a normal heart rate is 60-90ish. Parker's ranges from 110 (last night) to 150, changing minute by minute.

* He can't really talk because he has a tube down the back of his throat. He is hooked up to cardiac machines, the NG tube, oxygen, two picc lines, IV antibiotics, nutrition that comes in a bag and looks like thick milk, pain meds he can pump himself, a blood pressure cuff, and two things on his legs to keep more blood clots from forming.

* His pain is such that he lashes out at me verbally (I understand), can't get comfortable, and wants to be put to sleep until this is over. One night they tied his hands to the bars of the bed during the night to keep him from pulling the tube out of his nose.

We are waiting now for the CT guided biopsy and scan. It is scheduled for later today. It is in a different building so they have to transport by ambulance. The nurse will come with us because they have to keep him on the pain meds while they are doing it, and they have to have the ability to give him the heart stuff if his BP or heart rate sky rocket.

Everything is complicated and scary, but in the midst of it all is my son, who might as well still be 3 years old in my heart, who needs an advocate, who needs someone to wipe his dry and cracked lips with a wet sponge, who needs someone to take off the blankets and put them back on forty times a night because his body cannot regulate his temperature right, and needs to tell him when his visions are real or nightmares. He still has nightmares of laying on the bathroom floor in his apartment all alone, not able to breathe, in excruciating pain, and not able to reach his phone to call the ambulance.

I have taken a temporary leave of absence from my job. Not sure how I am going to fund it, but there is no where I could be than right here, where I am, at this minute.

If the blockage is due to the inflammation of the pancreas, that is a matter of more time with nothing by mouth so the pancreas can rest ~ possibly 6 weeks. If it is caused by the location and pressure from the biggest cyst, that means possibly draining it, or it means waiting until it matures and builds a wall so they can surgically remove it. Another 6 weeks. The pancreas is made of mush, so they can't go in and cut it out and expect the pancreas to heal. Doesn't work that way.

Like I said, nothing is simple with this case. All the doctors working with him tell us this is one of the toughest cases they have ever seen, and acute pancreatitis is no picnic on a good day. But we have a great team of doctors, and we have lots of folks out there praying, and my lucky penny on the rail above his bed. Surely all that will help pull him through.