At The End Of The Day

What a horrible day it turned out to be.

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.

Smart Water

I had a discussion with Parker today about the things that are making him feel anxious. Imagine, waking up after two months flat on your back ~ you can't sit up, you can't breath on your own, you have all kinds of drugs dripping into your body keeping you alive, your stomach cut is open under the sheet, covered only by a sponge and cellophane and held together by a piece of plastic sewn inside. You can't get up to go to the bathroom, or even stretch your legs.

Your bed rocks back and forth at will to keep you off your spine (bed sores) and it makes you sea sick, your hands are tied, you haven't had food in almost 2 months, you are so thirsty nothing quenches it and half the time someone else tells you that you can't have water anyway. You can't hold a pen, reading makes your eyes go all jiggly, tv bothers you because it is too loud, your only window is the size of a bathroom mirror and on the other side of it is a brick wall, eliminating the possibility of sunlight. It's enough to make me crumple at just the thought.

Parker is afraid of death, he said. And that they will continue to find more and more things wrong with his body that there is nothing he can do about. I completely understand, but the pain in which he told me these things made me realize he needs someone other than his Mom to talk to.

I have asked Kevin, the Chaplain, to come speak to him. He doesn't wear Chaplain clothes and Parker likes him. Kevin is very gentle, but will tell the truth to the best of his ability. He is compassionate and sympathetic and gentle. I think it will help Parker to process all of this, which in turn will help him to move forward with his recovery.

In talking about this today with Greg (his nurse) and Francis (the Critical Care Unit Manager) I realized that my own progress in dealing with this is blocked by the fact that I still cannot allow myself to think about those two days: April 14th and April 22nd, the two days they told me I was losing him. Just writing it brings me to tears and I shut down.

I know that, in order for me to help Parker get well, I have to be mentally well. I have to deal with those days. I have to do what I always told my kids to do, I have to face those fears head on and begin the process of getting past them. I can't stand the thought. I imagine laying on a floor of some shrink's office, curled up in a ball in the dark, unable to move. Unable to breathe. But I have to do it.

Whenever I walk home at night I allow myself the luxury of releasing the tears that have been building all day. There is a group of homeless people who live in the park across the street. The other day I was walking past, sobbing my eyes out, and I saw them gathered under a tree near the road. One of them said, I really wish someone would help that poor lady .... I'm really tired of hearing her cry!

There was something humorous hidden in that statement and I had to wonder, are the homeless the sane ones and the rest of us crazy?

P.S. The Smart Water picture is because Smart Water makes me smile. A story for another day involving my niece, McKensie and I. Smiles are good for the soul. So there you have 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!

Mother's Day

This afternoon Parker was lucid enough to wave me over to the side of his bed, point to my chair and mouth the words, Sit here! Then he pointed to the words I had written on the white board on his wall that say, "Happy Mother's Day!" And he smiled.

Wonderful Mother's Day. He drifted in and out all day, but no fever (so far), everything quiet which was such a blessing.

I love you, Parker and James. So much!

Saving My Son

Before I start ranting, please be sure you see the post below and the picture of the beautiful flowers James sent me yesterday for Mother's Day. I called him this morning and woke him up (I get my days mixed up and forgot it is Sunday) and first thing out of his mouth, groggy and still half asleep, was Happy Mother's Day Mom! Did I mention that my children are perfect?

Yesterday proved to me that hospitals are dangerous places and I need to keep my eyes and ears open. When the ENT did the tracheotomy, he reported to me with some pride that he was able to use a regular size trach tube for Parker. He told me he had to "shave back" part of nis neck to make it work, but he had done it. At the time I thought, how stupid .... why would you put in a regular size trach tube on a large 6'4" man with shoulders the width of Dallas and a neck to match? But! I figured, what do I know?

Once again, Mama Bear knows best. The Critical Care doctor was furious when he had to come in the middle of the night and retrieve the thing that had dislodged and slipped out of place. He replaced it with the larger size trach tube. Then he showed me his own neck, which to me looked long but not too wide, and told me when he had a trach tube he had to have the large size, too. There was no reason for Parker to have the one he had, and the Critical Care doctor shared with me that Parker could have died from that! I'm pretty sure I didn't need to know that part, but it did prove to me that I need to follow my instincts and continue to speak up.

Then yesterday, during the day, Parker spiked another fever of 103. Dr. Garcia ordered a CT Scan to be done to be sure the nasty cyst wasn't growing more infection (since the tube draining it had come out a couple of days before .... still don't know if it came out during his Physical Therapy or if he pulled it out himself). The larger CT Scanner was broken, which I think is really lame since this hospital does bariatric surgery and advertises quite arrogantly for their "world renown bariatric team" (what do they do, tell people they can't come just yet till the thing is fixed?) The regular CT Scanner is fine, except Parker is currently carrying an extra 40 lbs of fluid they are trying to get drained off via Lasix. So his weight was over what the regular scanner bed allows. Dr. Garcia and another doctor had to tell the Radiology department that it was a life or death emergency to get them to try and use the regular scanner.

Parker has serious anxiety over the CT scans. He usually throws up and they don't notice and he has to hold it in his mouth until they get back to the room and someone finally sees him frantically pointing to his mouth. The Charge Nurse yesterday, a very sour, heavy set woman named Francesa (who should NOT have been wearing hot pink), practically growled at me when they were preparing to take him for the scan. She grumbled to someone else something about "we shouldn't be doing this." Stupid woman. She didn't know Mama Bear has fangs in addition to ears. But I let it go. I wanted my son cared for and so for his sake, I kept my mouth shut.

I went to the waiting room and typed away, hitting the keys of my lap top with a fury reserved for the days when my gut burns with whatever the enzyme is that is also known as "heart ache," and waited for them to tell me when it was over. His nurse, a very, very nice man named Phillip (who met his wife on eHarmony and became a live version of The Brady Bunch) promised to let me know as soon as he was done. An hour ticked by before Francesca came to get me. She shook her head and scowled at me and said they hadn't been able to get a good scan. The table on the scanner kept halting and they couldn't get him to go back and forth through it.

We don't even know if it's working anymore .... she complained, staring at me as if somehow I was personally responsible since my son is critically ill and the other scanner was already broken. I used every bit of restraint and patience and tolerance in reserve to not hit her in the face. I will be leaving a message for Francis, the Critical Care Unit Manager, and let her know that Francesca is a bully and needs to go back to sensitivity training. And whatever her problem is, I don't want her near my son anymore. If you can't put aside whatever your own issues are when you are working with a critically ill person, then you are in the wrong business.

Last night's nurse, Shelley, was very nice. A bit abrupt at first, but then I realized she saw how distraught I was and wanted me to get some sleep. Parker had a good night, but Shelley didn't know he has been on the Versed for a month now and so she "weaned" him off it overnight. When I got here this morning, I told her he had been on it, up to 10 what-evers, since April 13th. She thought he had only been put back on it because of the trach surgery. I also told her there had been seizures in the family, his Dad and his brother, and that Parker'd had an episode of a "non-neurological" narcotic related seizure episode when he was weaning off the morphine. She rolled her eyes and looked back at the chart and put the Verced back up to .5 somethings. I really hope that's enough.

I'm getting pretty frustrated with this whole thing. First the split mesh and the nurse who was afraid to call the doctor to tell him Parker's guts were on top of his abdomen. Then the VRE infection and the fact he is now in isolation. Then the trach mistake. And the yeast infection in the picc line. The fact that no one noticed he hasn't had a bowel movement in over a month, and for over a week he has been getting fed through a tube which is going where??? And on and on and on.....

The good news is, he remained fever free overnight (99 degrees under the arm which translates to 100, but is a damn sight better than the 103 earlier in the day). His heart rate has been stable in the 120's, and he breathed on his own all night. His breathing is SO much easier since he has the larger trach tube, it is amazing what a difference that made. He is now on the .5 of the Verced and I am hoping I will get to share a nice day with him, and he will be a little more lucid than he has been for the past month.

I wrote the date on his board before leaving his room for the nurse change, and underneath I wrote Happy Mother's Day Parker!

P.S. The bush and flowers in the photo above are what smell like Bay Head. Does anyone know what it is? And please be sure to see the post below and the photo of my favorite lilacs that James sent me yesterday. :-)