Look Ma! No Tubes!

The last tube coming from Parker's nose was taken out! I know I never posted a photo when everything was attached, but he was unconscious and I wasn't able to ask his permission. I am so proud of this photo! You can still see the trach tube and collar, but that will have to stay for several more weeks at least.

Parker says the picture looks like a mug shot. I say it is the most beautiful picture I've ever taken of him and that he's been watching too much MSNBC today.

Last week they took out the NG tube which suctioned everything from his stomach, and today they took out the tube they have been using to feed him. It had gotten dislodged and wasn't in the small intestine anymore, it had come up to the stomach and the doctors thought that might be why he was still throwing up a little bit.

That was one LONG tube!

Yesterday was a little frustrating in that Parker's digestive system still won't behave in the manner he would like it to. But we know the more he moves, the better he will be.

Today he worked with the Physical Therapists for over half an hour, a combination of sitting up unassisted (only a little help getting up at first), standing twice and shuffling his feet to the side. This is to be sure his brain remembers how to tell the feet to move when he starts to take steps. Baby steps. Hopefully by Friday. That's the goal.

I have slept at the hospital each night since we moved from ICU. They have a chair in his room that converts top a table, and last night our wonderful Nurse Nancy (see Fairy Dust post from April 12th) gave me foam panels to lay on top of it so it felt more like a real bed. Moving from ICU to IMC (Intermediate Care) is scary in that our nurse has two or three patients, not just Parker. There is a lot less to fret over, but when you've almost lost your life, or that of your child, it takes a bit of convincing that this is all okay.

Today the Critical Care Specialists said their job with Parker was done. They are very pleased with his progress and although he continues to have a lot of issues to deal with, none of them appear to be imminently critical. Remember those words? We've come a LONG way!

John comes back sometime soon and I am hoping when he does I will be able to go out a little west of Austin to visit one of my oldest and dearest friends who has waited so patiently for me. It will be really nice to be in a totally different environment for a day.

Parker realizes there is something very significant about the fact that he lived through this. His life will never be the same, physically, emotionally and/or spiritually. He talks a lot about what it all means, but understands as I do for myself, there are more questions than answers at this time. He still wants me to read the blog to him, and we wove our way through a little bit more yesterday. Parts of it are so hard to read still.

Our nurse today, Lisa, brought Parker a cup with a few pieces of cut up fruit. I wish I had taken a picture of his face when he ate his first piece of cantaloupe. He said it was like Heaven. His diet is now called "full liquids" and for some reason, someone in the kitchen thinks he must love grits because he gets grits for breakfast, lunch and dinner. I'm not sure how grits qualify as liquids, and why they always appear when he won't even eat them. We think it is kind of funny.

Kidney doctor had to put him back on Lasix to get some of the fluids off that have been building up again, causing swelling and high blood pressure. They have stopped forcing him to take the orange potassium liquid, so now he'll have to take the giant horse pills instead. But the orange liquid stuff comes right back up.

Interesting potassium fact: eating one banana a day doesn't cut it. You'd have to eat a large 20" banana to get a significant amount of potassium. Raisins are better, but the best thing is dried apricots. Kidney doc says dried apricots and water are the best things in the world for the human body. :-)

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.

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.

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?