The Seventh Sibling

I can't delve into what's happening right this minute because my brain can't handle this stress much longer. I will write later, just know that we need your prayers again..... STAT!

By the way, St. Jude, I need you again today.

I do need to write though and have long wanted to write about a family I met here, a family I made friends with and who I found to be quite remarkable. Obviously I cannot share their names, but telling their story will help me now, when I feel the sense of hopelessness we have all shared here in this room.

Parker came down to ICU for his first surgery on the 13th of April. Later that week this family showed up. At first it was just two young men pulling an ice chest on wheels, setting up shop in one of the back corners of the waiting room. By the next day there were people I was able to identify as the parents of the patient, a fiance' (one of the two young men who was here at first) and about 15 other people. There was more food back there than at any family reunion I'd ever seen.

Over time I got to know the family. The patient was a young woman age 30. Her wedding date was supposed to be this coming Saturday, May 2nd. She had come into the hospital the week before with unexplained kidney failure. That was resolved pretty quickly, although I don't know that they ever found out what caused it. Before she could be discharged from the hospital she had what was referred to as a brain bleed. That Thursday night, two days after the darkest day of my life, the girl had brain surgery.

This family was remarkable. The fiance' stayed here in the waiting room with his brother the first few nights before moving to the same place where I have a room. The fiance' was about 30 also, very polite, very smart, and so crazy in love with the girl it was remarkable to see.

The mother is one of the strongest, most focused people I have ever met in my life. You would think she was tough on the outside, but she wasn't. She was compassionate, kind, and always seemed to know exactly the right words at exactly the right time. Where I can write what I feel, or what needs to be said much better than I can speak, the perfect words seem to fall from her with a grace I had never experienced before. There was a lot to be learned from her. She had more clarity and wisdom during this incredibly stressful moment than I have on my best days in Wyoming.

The Dad was laid back, very bright, emotional, kind, and funny. Oh, and tall. Really tall. Like a big, tall Texan. He always had a kind word and a hug for me, always wanted to know about Parker, and listened with genuine interest and concern. He and his wife were like two pieces of a puzzle that fit together to make a whole.

On the next Tuesday the Chaplain came with the neurosurgeon and took them into The Room where you get bad news. Half an hour later the Mom flung the door open and came out on a mission.

It's very, very bad news, she said to me. I have to save my daughter.

With that the Mom sat down at her computer and got to work researching what the doctors had told them, researching everything she could to get the ball rolling to make sure her daughter had every opportunity to recover, the opportunities the doctor had just told her would not make a difference.

I could see the Dad and the fiance', still in the room with the Chaplain who was comforting them both. They held their faces in their hands, their shoulders racking with sobs. It was horrible. I wanted so much to comfort them. I put my hand on the Mom's shoulder and told her, Let me know what I can do.

The neurosurgeon had been unnecessarily brutal. The "best case scenario" he gave them was what they had believed would be the worst case scenario. It was grossly unfair. They were not prepared for this news.

Another young man might have walked at that moment. Another weaker man might have not had the guts or the strength or the love or the will to stand by this girl he had not yet married. But after a day spent in shock, in an agony you cannot describe no matter how you write, he came back the next morning with an armload of books. He had armed himself with every available resource to figure out a way to prove the doctors wrong. He wasn't going anywhere. I wonder if the girl knows how lucky she is. If not, she will know someday because there is a "happy" ending to this story.

Every day when I got here a few minutes before 6:am, the fiance' showed up right after me. We said hello, then went to our respective loved ones rooms to say good morning and see how the night went. I didn't know where he worked, or what his employment circumstances were (being away from his job for so long), but I did hear the Mom comment a few times that his boss had been incredibly supportive and told him to do what he had to do. They all said he was very lucky to work where he did and have such support and kindness.

The neurosurgeon was wrong. The girl DID recognize them. She did respond within a few days when they spoke to her, she recognized a friend who came to see her and "chatted" away about everything that had happened. She couldn't speak with sound yet, but she had an understanding of what was going on, she had memory of recent events, she knew who the people around her were.

It was like a miracle. She still couldn't move the effected side of her body very well, in fact only occasionally was she able to do anything. But that family had done their research and had taken into consideration every aspect of what would make the best rehab facility for her. I heard the Mom make a comment that she wanted to be sure where ever the daughter went it would be an easy place for the fiance to get to and to visit every day.

My understanding was that they didn't know the fiance' very well before this event, and while the Mom had gone to college with his Dad 40 years ago, the two families hadn't met again until this happened. You get to know people in a totally different way in this room. We are stripped of everything that protects us from fear. We are no longer separated by race, by gender, by station in life, by geography. We are all in this together, and we band together like I imagine God intended us to from the beginning. That is how you get to know people in the room.

The Mom told me one day it was a bright light in an otherwise dark picture, getting to know the family who loved her daughter and who would be a part of their family for the rest of her life. She said they felt so blessed to have found them to be such wonderful, spiritual, generous and loving people. I am sure there were bumps and glitches and challenges, that would only be natural. At least I assume there would have been some. But these families were so graceful and dignified I would not have known if there was anything like that.

In the end the daughter was moved to a regular room last weekend. I missed the family's companionship, the waiting room became lonely and dark again. But how could I not be so happy for them?

Yesterday the fiance' and the Dad came to see me, to say good bye. The daughter was moving to her rehab facility. They were joyous and optimistic and hopeful and on the verge of being happy. They asked about Parker, I told them about the most recent set back, and they both hugged me.

Right before they left, the fiance' said, I'd like to do something nice for you. I work for a restaurant about 5 miles from here. I'd like to treat you to dinner when you get to the point you can leave the hospital for a few hours.

What restaurant? I asked.

Of course, the only restaurant it could have been is the one owned by my brother's best friend and college roommate. He is the family friend who opened his home to Parker when he first moved here, gave him a place to live until he got a job and got his life moving forward. The same friend who has been a part of our family for 30 years, the friend who was the only one with the guts to change out my grandmother's false eyeball when it got turned the wrong way. He even lived with another one of my brothers when he first moved to DC, before returning to Austin to open a brewery and restauarnt. He is the friend who has come and gone throughout our lives like a seventh sibling. The fiance' of the girl with the brain injury is the brew master at our friend's restaurant. What a small world, and a funny twist.

I love you Parker, keep fighting Sweet Cakes. We're all right out here waiting for you. God is with you.

FURIOUS!

Here is the lesson: Mother knows best.

The wound care person came in, looked at Parker's abdomen, gasped and said, Hurry, we've got to get the surgeon here now, this has herniated! Those are his bowels!

I am better now since I spoke with the head of nursing and explained I did not feel "heard" yesterday, and feel like if something had been done about it yesterday Parker A.) Would not be in this pain today, and B.) Might not be requiring further surgery today.

Dr. Garcia assured me this was a "bump in the road" compared to other things, but he isn't the one with the son laying there in pain. Pain drives so many emotions. More later.

I love you Parker.

Too Good To Be True.....

I had this feeling it was too good to be true. Parker has been doing so well, and yesterday I kept waiting for the ball to drop. I don't know how serious this is, but the wound-vac thing that is holding his abdomen together, along with the sewn in piece of mesh that is supposed to be supporting the muscle wall, split. I showed it to the nurse and she had the wound care people come look at it. At that time, about 6:pm, they didn't think it was that urgent. I explained to them how when Parker coughs, he coughs BIG and the abdomen bulges so much, and they didn't really seem concerned.

So today, of course, the thing is split more, and has separated from his abdominal wall even more. And for the first time since he woke up he has asked for pain meds.

I feel so furious that no one listened when I told them it looked different, it looked odd, something was wrong. I am waiting now for the doctor and the wound care people to come. Furious.

Parker's Dad is on a plane right now on his way down. I'll be really glad he is here to not only give me a break, but mainly because Parker is so anxious to see him.

I love you Parker, and I'm sorry you are hurting again.

Tuesday's Looking Mighty Fine So Far

I was too exhausted last night to write, but exhausted never felt so good in my life. Trying to learn to lip read from someone who doesn't have a lot of strength to move their mouth is harder than you'd think. Parker had so many questions, I stood next to his bed for at least 6 hours trying to figure out what he was asking, and trying to answer everything.

Where's Dad? That was always #1 every time he woke up and realized where he was. I assured him his Dad had been here for a long time and would be back in two days.

How long?

What are these tubes?

Can I have water?

Where is James?

Why are you wearing those gloves and the yellow cape?

When can I have water?

When can I talk?

When can I get the trach tube out?

What day is it?

How long was I unconscious?

Do you have my phone?

Can you rinse out my mouth?

Does James want one of the green lollipops?

When was the NFL Draft? Who did the Cowboys pick?

What is this tube for?

Why are my hands tied?

If I promise not to touch the tubes can you untie my hands?

What is the black thing on my stomach?

How many tubes are in my nose?

Can you scratch my nose?

Can you get that thing out of my eye?

Why aren't there windows?

What are those machines for?

How long have I been away from work?

When can Dustin and Jamie come see me?

Where's Dad?

Then came the heart breaker:

I'm really sorry Mom.

Yesterday the nurse took the NG tube out completely. This surprised me because before they just turned if off for a day or two to see if his stomach could tolerate the stomach acids, but she came and took the whole thing out completely. Unfortunately, she did it right before they lifted and turned him to treat his bed sores on his back. He threw up.

They left the NG tube out, but for the rest of the day the left half of his abdomen stuck up in a weird way and looked even more grotesque. I asked why and the nurse thought something had shifted a little, but wasn't too concerned about it. I was, I fretted all day.

What if? What if? What if????? Tomorrow's Tuesday, that's not a good day for us! What if his bowels have shifted and the tube came out of the cyst and he crashes again? What if... what if... what if????

I took some airplane drugs. Just one quarter, but enough to help me relax. The last thing I needed was to make Parker nervous, or to ask so many questions they kicked me out of the room.

The second time they treated the wounds was much more successful and he had no problems being moved. Martin, the Physical Therapist, came in to work with him. Wow! If they are having Martin start working with him that must mean some serious progress!! Martin was impressed with how strong Parker is after laying in a bed for almost two months, and in fact said he wouldn't be surprised if Parker didn't even need to go to rehab once he gets out!

Once he gets out! Did you hear that??? Once he gets out!

Last night's nurse, Jim, is from Boston and is Parker's age. They connected right away because of sports. What this means is Jim talks about the Red Socks and the Patriots and Parker is forced to listen. :-) But Jim was one of the best nurses we've had so far. So thorough, explains everything, helpful, smart, but he referred to himself as a dork. James was standing right there and said, I'm a Physics Major so I know all about being a dork! They were instant friends.

Parker threw up again this morning so they put the NG tube back in. He was upset, but accepted it once it was done and asked if I knew how long he'd have to have it in. I don't know.

Today's report so far from Dr. Morrison (the scary Critical Care guy) was SOOOOOOO fabulous! He wants to resume the tube feedings even though the NG tube didn't work yet.He said, and I quote, All his blood work looks good, his heart rate and BP are stable, his white cell count is decent, he tolerated breathing on his own very well all day yesterday, he is doing remarkably well and it's just a matter of time and keeping him going in the right direction.

CAN YOU BELIEVE IT?????

Thank you God.

Lovely

Oh what a beautiful day.

I love you Parker.

The Chaplain and The Surgeon

Kevin is the Chaplain. He came by and we had a nice talk today. He has been so helpful to me and to Parker. He is very soothing and spiritual and keeps the things the doctors say balanced for me.

Dr. Garcia came by and said everything looked stable. He is happy with the abdomen, he is especially happy that Parker was so alert and asking questions. He said the first and last thing Parker asked was, How long?

Dr. Garcia interpreted that to mean How long have I been here? When he told Parker two weeks in the Critical Care Unit, he said Parker seemed to accept that. He and Kevin both told me if i can't understand what Parker is saying i need to tell him I don't understand and if he will rest and get better we can get him off the ventilator sooner and then he can ask all the questions he wants. But he has to stay quiet and calm.

Another Day ~ Another Doctor

I met Dr. Bissett today, the Infectious Disease doctor working with Parker. He is concerned about the red rash that keeps developing and is going to look into it further. He believes its origin is linked to the IV line on his chest near the upper part of his arm. I explained that he had gotten that rash since this started and it moves around, but in the beginning it was happening after they would inject saline solution into his picc line.

Parker is more alert all the time. He isn't happy about being more alert, believe me, but I will take his attitude any day! Every time he wakes up he has to be reminded where he is and why. But now rather than fighting it he is getting to the point where, after a few moments of remembering, he knows where he is. He still can't figure out why and still looks at me with a pleading look, mouthing words I can't understand. It's scary and frustrating and sad.

His nurse last night, Jim, said this is the hardest part because he isn't aware enough yet to remember from time to time, and to be able to have the restraints taken off, so his fears and frustration are magnified.

No, Jim, the hardest part were the two times they told us we were losing him.

John is coming this week. Right now he is scheduled for Friday, but after his conversation with Parker this morning, and Parker's reaction and pleading after it ("conversation" meaning I held my phone up to Parker's ear for John to talk ~ then I had to disinfect the Blackberry before letting it out of the room) he is going to try to come earlier. I know without a doubt that Parker will rest more easily when John gets here and it will help his healing. I know that with every ounce of my being that makes me a mother.

Parker wants water. He can't have water, his bowels have to rest. I wonder if starting the feeding tube into his small intestine early last week had anything to do with the crash he experienced on Wednesday, requiring the emergency surgery? I can only swab out his lips and tongue with the green lollipop sponges very briefly because he tries to suck the water from them and poor Jim almost had heart failure.

Dealing with Parker right now is like dealing with a 3 year old. He has a need, it must be filled. He can't rationalize why it can't happen. A lot of that is with drawl from these drugs. I know that. It is was it is. But at least he has needs! For that I remain eternally grateful, to God, to the doctors and nurses and specialists working with him, to all my family and friends across the country who are praying and sending well wishes and support in the form of everything from money to gift baskets to gift cards to care packages to text and email messages with good thoughts for the day ... everything. Thank you, thank you, thank you! Your kindness and generosity are making it possible for me to stay here by his side, to get him through this.

Parker's temp is 101.3 this morning, but Dr. Bisset said he would completely expect a fever, especially with the red rash thing on his body. I wonder if that red rash is key to something we have missed? Something that is keeping him from progressing towards wellness?

Every doctor keeps reminding me how sick he is, how far he has to go. I KNOW that, thank you very much!

I'm getting tired and cranky. I had two and a half nights sleep from having the stomach flu and felt this morning like I could easily stay in bed and sleep until September. I think when John comes I will try to sleep through two nights and one whole day to gather strength. I know there are others who can come relieve me, and I appreciate those offers so much. But there are some things only a parent can do, and this is one of them.

With the temp over 101 this morning I keep waiting for the weekly crash. Please God, please let him stay stable this week and continue to heal. Please???
I love you Parker, please help your body get well.

Changes

Nurse told me this afternoon that Parker's urine had the VRE bacteria in it when they cultured it, meaning it had moved from the cyst and abdomen into the bladder. I asked him how serious that was and he said, Medium. My friend said, Take the medium, there's another level.

Okay, I'll take medium.

Neither John nor I liked the nurse Zhan that Parker had the last two nights. It seemed like Parker annoyed her, she complained when the NG tube dislodged and she had to clean it up, she said to me first thing this moning, He won't settle down, he is too anxious, I can't get him to be quiet. I could just imagine her getting in his face and telling him to relax ..... just exactly what you DON'T do with Parker and expect him to calm down.

Then John told today's nurse, Rob, that it was hard to get information from Zhan and when he is that far away he really needs to be able to communicate with the nurse.

Apparently Rob heard us because tonight's nurse is named Jim. John spoke to him and felt Jim understood Parker. James is there now, no doubt telling him all about the Cowboys picks. I'll be back at 5:45AM. Need one more good night's sleep to get over whatever it was I had and bounce back.

Please keep up your prayers. We have a LONG way to go.

Today Parker mouthed the words to me, I love you Mom, I love you.

I love you,too, Parker. Good night Sweet Pea.

Infectious Disease

Parker has been more alert and awake today than ever before. I have been sitting by his bed for a few hours, just took and break and sent James in to give him an update on the NFL Draft. When James was talking about it before, Parker looked a little bewildered at first, then settled in and just listened. Not sure how he feels about it, he can't talk yet.

The infectious disease doctor came in. Of all the four doctors I've spoken to today, he had the most rewarding news. The second doctor I spoke with, the Critical Care Specialist, once again slashed all my hopes to the ground.

He's a very, very sick young man and Dr. Garcia may not be able to go back in there without killing him!

Can I mention that he said that by Parker's open door with Parker wide awake? So no doubt he was terrified and crying when I got into the room. This continues to be a minute by minute process. They said it can take a long, long time for him to recover from this. They don't really define "long, long time" and won't when asked.

Then the infectious disease guy came by. He is the weekend doc so not completely familiar with Parker's history. But he gave me the only shining light of the day. He said the VRE infection, while still there, is showing up in the cultures with plastic, meaning they took the cultures through the tube attached to him and there is going to be bits of bacteria within those tubes that will come through as well. So not a perfect indication of how much is still in his system. His white cell count is down to 9.8 (yea! yea! Double-Triple yea!) and although he has a fever, the pancreatitis could still be causing that.

In a nutshell, what I gather from him is that Parker's body is working to fight everything and it is a matter of time, unless some other thing pops up. Which it could.... I have to keep myself prepared for that because it has been quiet for a few days now.

I think the biggest risk at this point is if another cyst develops and gets infected. I don't know how long it has to go before it is considered safe. This is a chronological sequence of events:

* March 10th Parker called an ambulance from his apartment and was admitted to South Austin Hospital. At that time they thought it was a gall bladder issue. The next day, when I arrived, they had determined it was severe acute pancreatitis.
* March 16th Parker had his first CT Scan which showed the pancreas was still inflamed, but did not show any fluid build up or pockets, which would indicate a brewing cyst.
* March 23rd Parker went home, thinking the pancreatitis was under control and he only needed to have gall bladder surgery to be sure it didn't happen again.
* April 2nd Parker had the MRI requested by the surgeon, Dr. Garcia, which showed the softball size pseudo cyst, plus two others that were smaller in size. He was admitted into Seton Hospital that day. We were hoping he wouldn't require surgery, we were waiting for the cyst to either go away on its own, or to mature which would allow them to do surgery more successfully.
* April 13th Parker had another CT Scan which showed the cyst was infected, badly. That was the night they did the first surgery.

I can't go on from there because I still can't re-visit April 14th. I have to keep thinking positive.

Wawa

After a night in a bed at the League House, I ran back here this morning at 5:30 (stopping briefly to inhale the jasmine that grows on a brick wall on the side of the road), really eager to see Parker. His nurse, Zhan is so negative and bossy to me. Her first words weren't Hello, or He's doing well, NOTHING positive.... this girl definitely needs a lesson in dealing with family members. She scrunchde hereyebrows together, shook her head and snapped, Well, I can't get him to go to sleep, he just stares, but he won't sleep.

I wonder if it occured to her that he's been asleep for almost two weeks and might be trying to figure things out? Oh and her first words to me yesterday were, Rob let his temperature get up to 102!.... Rob was his day nurse.

Sorry, had to get those gripes out of the way. She really annoys me. I just think part of a Critical Care Nurse's job should be to understand how each family needs communication that will help them deal with this the best. It is a management thing, pretty simple.

His temp is good, Zhan said with the cooling blanket he stayed under 100 all night. His BP was really close to normal, 128/99 which is high on the bottom, but it had been so low on the bottom I am not sure what the difference is. (Any of you nurses out there who have been SO helpful with your information, please let me know if this is okay that it jumps all over the place, and when do I need to be concerned.)

His ventilator that is hooked up to the trach is set for 12 breaths per minute. He is breathing over it, up to 20 breaths per minute, which I THINK means he is initiating his own breath but still breathing a little heavy. Yesterday they turned the ventilator off for 4 1/2 hours for him to breathe on his own, but she said he was exhausted after that.

His kidney function is good, white cell count coming down (I couldn't see the written thing on the wall, but last night it was 10.8 and Zhan said today it was "coming down").

He did pull the bulb off the tube that drains the cyst from his pancreas, and her concern was that it meant she had to clean him up again after she had already bathed him. I wonder how she would have handled the night the NG tube spilled bile and green mush all over him TWICE! But I need to ask the doctor this morning if that is going to risk another issue with that cyst like we had last week, and what we should be looking for as signs to take action again.

Parker was fairly alert this morning and when I took his hand he kept mouthing some words over and over.

Wawa ... Wawa....

I'm pretty sure he wasn't asking to see Barbara Walters, so I asked if he was wanting water. He nodded his head. Zhan said no, he can't have it because of the trach. So I am going to ask when he will be able to have water. I think people eat with those things in, right?

I explained he couldn't have water just yet and that I knew it sucked to be all hooked up like he is. I did tell him he'd had several surgeries, and had the vent tube taken out of his throat because it was so uncomfortable. That's why he had the tracheotomy. Once I said that he seemed resinged, closed his eyes and went to sleep. But he wouldn't squeeze my hand.

When he wakes up again I'm going to tell him his Dad will be back on Friday. I know that will make him happy.