Saturday to Remember

What a blessing. To sit with my son on a Saturday in May and talk all day. To hear him laugh at Comedy Central. To see him eat a spoonful of soup. To hear him discover his spiritual awakening. To know that God has worked His magic and that my son is still alive, after all the odds were stacked against him. To look out the same window and watch the lightening tear across the sky, and see the rain clouds in the distance. To help him do his physical therapy exercises so maybe tomorrow he can try to stand up again. To hear one of the doctors, who we haven't seen since we went down to ICU, proclaim it really is surprising everything Parker came through. It has been an amazing day.

Parker asked me to begin reading this blog to him. So today I read just past the day of the surgery when the anesthesiologist told me he wouldn't be responsible for Parker having cardiac arrest on the operating room table because his heart rate was so high. I couldn't get any further than that. Reading from April 13th to the 26th wore me out. Parker and I both cried like babies. It certainly gave him a better perspective of what he came through, and of the miracle that he is still living. We've heard it enough times now, from nurses, from doctors, from everyone who knows Parker's story, that we get it. He came through incredible odds. He made it.

When I read to Parker the posting about James getting here on that most horrible of days, and how hard it was for James, how heart wrenching to watch him be so brave and strong, and then fall apart in the hallway, as I requested, Parker cried the hardest. He marveled at the change in his brother, in his maturity, his sensitivity, his dedication and his love.

I am so lucky to have these two boys.

Good night sweet boys. I love you.

The View

There it is... the view that represents Parker's move into the third phase of his illness, treatment and recovery. We are back in the same room where we started in the Intermediate Care Unit, heading around the back turn toward the homestretch.

Yesterday they moved us to a room with a window facing a courtyard. The room was so tiny it couldn't accommodate the special chair they have for Parker to practice sitting up, nor the Green Machine the Respiratory Therapists hook up to him every 8 hours to force air into his left lung (which still isn't filling as they want it to, since coming off the ventilator), nor all the other equipment that are all a part of his life. So after a couple of hours they up and moved us again, back to room 463, where we were in the beginning of April, before the 6 surgeries and the 7 weeks of ICU.

The tower in the photo is the University of TX Tower. It is the same one where a sniper killed 14 people from the observation deck in 1966. Interesting fact I never knew but just read ~ the autopsy on the shooter revealed he had a brain tumor. Never heard that before.

Parker loves the UT Tower. During football season he would call to tell me it was lit up bright orange at night, telling the world that UT had won a game. Or maybe it's for all UT sports, I'm not sure and Parker is finally sleeping. Let sleeping tigers lie.....

As we knew might happen we had a little set back today. There has been constant work to keep his intestines working properly, and it doesn't always work out the way we want it. Either too much or too little. Today was on the too much side. The throwing up was especially upsetting to Parker because in his mind, that's what started this whole thing and represents a possible new pancreas issue.

Dr. Driskoll was in the room when it happened and believes Parker needed to cut back on what goes into his stomach for a few more days. He's only had about 8 bites of yogurt yesterday, juices and a few bites of applesauce. They cut back the tube feedings and cut out the food by mouth completely for a few days to be sure another ileus isn't starting up.

In the whole scheme of things, when you know where he came from, and how close to losing his life, this is nothing. A temporary setback. Disappointing and inconvenient, but nothing more.

Barb, the Wound Care Nursing Manager, has ordered a new bed and chair from the rehab hospital so Parker can make more progress without having to make another move anytime soon. She came in and gave him a pep talk this morning, told him how far he'd come, how amazing it was for her to see him sitting up and talking when she has worked with him from the beginning of his bed confinement. When he was on the ventilator we had to have three other people come in to turn and hold him up while she worked on his bed sores. He was like a lump of flesh and machines and tubes and beeps. Parker's jaw started to shiver and his face turned red ... just hearing it from an other person makes him feel so grateful, and somewhat stunned, to be alive.

The magnitude of what has happened in his life is beginning to make him think a lot about what lies ahead. My brother asked me an interesting question the other day. He asked, if you take away the terror part of all this, remove that from the picture and look back on this experience in one or two years, will we see this as a high point or a low point of our lives?

I had to think about it a lot, but realized the answer lies in what we do going forward, what our lives become as a result of what has happened. Only then will we know.

Why Us?

The patient of another family I made friends with from the waiting room died during the night. He was the father of a precious little boy, husband to a wife who couldn't leave his bedside, son to parents who have been in that waiting room for weeks. I saw them take him away this morning, and I couldn't help but wonder why? Why us? Why did we make it (so far) and my friends loved ones didn't? My faith is strengthened even more, and I know there is a reason for Parker to still be alive, just as there is a reason for Mrs. Garcia and Chris to have passed.

Please pray for those families.

Challenges and Opportunities

My good friend from the florist, Michele, told me years ago, Life is full of challenges and opportunities, and sometimes they come in the same package.

I told my kids that every time it was appropriate. I said it to my riding students, and preached it to all the people who have ever worked for me. Look for the opportunity within a challenge. Or as my old boss Mike used to say, With all this shit, there's gotta be a pony in there somewhere.

So here we are, at that point where the challenge before Parker is full of opportunity. The challenge is called rehab. The painful part is called Physical Therapy. The opportunity is to be able to walk out of this hospital someday, on his own two feet. Here is how far we have come.

* Ten weeks ago Parker went via ambulance to the first hospital. This is where we began to understand how serious and painful the disease called pancreatitis can be. But this was just the beginning.

* Five weeks ago Parker was flat on his back after his first two surgeries, with a septic infection, being kept alive by machines and medications. He was on a ventilator to make his lungs work, in a state of medicated unconsciousness. His kidneys had failed, his heart was at serious risk of stopping, most of his body had shut down. We didn't know if he was going to live. The odds were stacked strongly against him.

* Today, Parker stood up at the edge of his bed for the first time in 7 weeks. He spent the morning worrying because he wasn't confident in his ability to accomplish todays goal. But he did it! He stood on his own two feet, his thighs quivering as they struggled to regain memory of what they were supposed to do.

* After he stood up, the nurses lifted him to a special chair that will help his trunk muscles re-learn how to sit up. And sit up he did! For an hour and ten minutes!

These things are HUGE! This is serious progress toward his getting well, and the ultimate goal of walking out of here someday, on his own two feet. But he has a lot to learn and some serious hard work ahead of him. I compared physical therapy and rehab to ten times the work and pain of two-a-day football practices in August ~ only instead of Coach Garlick screaming at him he has a group of cute nurses cheering him on.

Today's lessons included:
* learning how to swallow properly so he doesn't aspirate anything into his lungs. With the trach tube still in pnuemonia is still a risk.
* practicing holding his cell phone and a toothbrush.
* learning how to reach to the table next to the bed for his bottle of water, which he is now allowed as much of as he wants.
* foot slides on his bed to strengthen his thighs and lower abs.
* stretches above his head and lifting his arms in the air with his fists closed to strengthen his biceps and triceps.
* stretching his feet forward, then back, thrusting his heel toward the wall, to strengthen his calves.
* holding a spoon so tomorrow he can eat jello.

Today was a big day. Every day is huge, because he is alive. And that's the pony in today's story. He is ALIVE!!!

As for the photo above? That's me, age 10. My brother and sister-in-law sent it to me with a card that says, Sometimes it helps to remember you've come through difficult times before. And now I remember the pony on that day. I had struggled to learned how to braid a real horse's tail and was showing my family, as close as I could, what it should look like in the end. I was quite proud of myself.

It Happened

I am at the room, taking a break while James and his brother hang out. James has to leave tomorrow. My phone rang and my heart jumped when the caller I'd said: J. Parker Steveson.

Hey Mom, it's me, Parker. Just checking in!

Thank you God! Thank you St. Jude, thank you doctors and nurses and friends and family who have all prayed to get my son to this point. I just have to say it again. One more time.

Hey Mom, it's me, Parker. Just checking in!

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?