Peter’s Page

This is just a quick update to let you know that Peter’s progress continues. Yesterday was another good day. Peter is being slowly weaned from the vent and some of the many drugs, but the difference isn’t visible yet (other than the removal of the paralytic). The doctors and nurses are very excited by his progress.

I don’t know when he could be removed from the vent completely and it really doesn’t matter much, as long as he does get off the vent eventually. The prayers and support are definitely working. Our slogan for almost a year now has been “Do You Believe in Miracles?”. The fact that the word ‘miracles’ is plural is especially ideal, since we need two: Complete recovery from cancer and complete recovery from ARDS. Keep on believing.

Feel free to celebrate this post while simultaneously knocking on wood. This will be a fun one to write, but I want to keep the balance between optimism and caution. The doctors say that most kids in this situation will take two steps forward, one step back. So far Peter has only taken steps forward (however small). Here’s another…

The paralytic was stopped. Erika and Auntie Macer went to enjoy a quick pedicure, one of the only inexpensive pleasures in Manhattan, while Ty and Uncle Roy (Troy) watched over Peter. When Erika came back and approached the bed she was met with movement from Peter. Her voice seemed to illicit physical responses (even though he had already been moving with Ty and Troy). He even opened his eyelids somewhat, but probably couldn’t see much. His lids have been set a quarter open for days now and his eyes are very cloudy and red. There is little definition between iris, pupil, and white. Also keep in mind that he’s very sedated.

So Erika proceeded to ask if he wanted her to read a book. He nodded. She asked if he wanted her to read so-and-so book specifically. He nodded. Ty asked if he wanted to thumb wrestle. His thumb came up and started to sway back and forth, ready for action.

The night before surgery, Peter was enjoying a skee ball machine at a restaurant. He was having an awesome time. He and Erika collected 1600 points by Erika’s figure. Peter disagreed with his mom later that night, claiming a different point total. Yesterday, Erika told Peter that she has been saving up quarters so that when he’s all better they can play skee ball. She asked if he remembered when they tallied 1600 points. His little hand rose up in some sort of protest or effort to correct the total.

Glimpses of the real Peter are busting through, right past his expressionless face and clouded eyes.

He has made moves towards his tubes, so he needs to be under constant surveillance. The ventilator is still doing all the breathing. He is getting even skinnier as his muscles are atrophying, so he started light physical therapy to keep his muscles working. His brain, though, is providing signs of hope in small movements and responses.

It might be difficult to transition the breathing in the coming days. Maybe it will be scary for him. I know it will be for all of us. But he came off the paralytic and interacted this afternoon without setting off any aforementioned beeps. He just keeps rising to the challenges.

Over the week, many of us have picked up some new Pavlovian responses. While bedside in the ICU, there are beeps and alarms coming from all of the various machines (including Peter’s bed, which is more complex than my vehicle). There is a certain beep sequence that comes from one of the monitoring computers when his blood pressure, oxygen, or heart rate get too high or low. That beep causes whiplash to whoever is bedside. The beeps are pretty common as his different vent or drug levels are adjusted, but they’re always unnerving.

The other sound that rattles me is the unexpected ring of a phone. I think that no news is good news at this point. Slow and steady progress doesn’t merit a phone call. When Auntie G and I communicate by phone, we now start our conversations with “everything is OK” before the greeting.

Ty and Erika are expecting some more beeps today as Peter progresses. The doctors are turning off the paralytic drug and will try to keep it off. They are doing this to begin transitioning the breathing effort from the ventilator to Peter. In lieu of the paralytic, they will increase the sedative to keep his movement to a minimum. So a more able Peter is likely to be agitated and that can increase blood pressure or cause other vital numbers to head out of bounds.

It must be a good sign that they’re able to take these steps, even if it causes some stress to the witnesses.

The upward trend continues. The vent oxygen levels have been reduced again and his blood oxygen is good.

Peter has been on a paralytic drug to keep him from trying to remove his breathing or feeding tubes and keep him from fighting the mechanical breaths. Today they stopped that drug for a bit, letting it wear off in order to get a sense for his capabilities and to see if he’s neurologically all right. As the drug wore off, he wiggled some toes and lifted an arm. The nurse asked him to squeeze his left hand and he did. Then he squeezed his right hand on request. I can only imagine how wonderful it was to see this simple interaction.

“Moving in the right direction” seems to be the appropriate phrase to describe the past few days. Peter remains in critical condition and on the ventilator. To be more blunt about it, he’s on life support. I just don’t want it to sound terminal, because he can and will get out of the ICU and walk out of the hospital. He is inching his way in the right direction, but progress is slow going in this recovery.

There are two signs of progress today. The percentage of oxygen in each ventilator breath continues to be reduced, yet Peter’s blood gas levels remain correct. I suppose this means that Peter’s lungs are extracting oxygen more efficiently (as well as discarding carbon dioxide). The other sign of progress is that an x-ray of his lungs showed improvement. I heard that his lungs appeared white in the last x-ray, so I assume they have cleared up slightly.

Some family members — me included — returned to Minneapolis today (and I want to thank Jake for getting us all out there in the first place). Some family members remain at the hospital and we’ll try to keep rotating our family into the hospital for as long as it takes. It clearly helped Ty and Erika to have some family with them. They read the comments on the site and take great strength from them, as well. What Peter needs are your prayers. Thanks for all the support and keep it coming until Peter is breathing on his own, until he is alert, and until he has overcome ARDS, and until he has conquered cancer.

This Saturday morning, Peter appears the same on the surface, but hopefully there is progress within his body. Even as I was writing yesterday that we don’t know what we’re fighting, the doctor’s were in fact referring to it as Acute Respiratory Distress Syndrome (ARDS). ARDS can be caused by many things and it isn’t known what caused it in Peter’s case. ARDS not a disease itself, but a condition of lung disfunction and critical lung damage.

It could take a while, but the idea is to keep Peter on the ventilator and maintain his vital numbers (oxygen, blood pressure, etc) while his lungs repair themselves. So far Peter seems to be moving in the right direction, but it’s too early to see real progress. They have lowered the oxygen level in the ventilator and Peter’s blood oxygen level has maintained the correct level. That seems like a good sign. His blood pressure was pretty steady yesterday and they haven’t needed additional blood pressure medication.

Our little guy is doing great considering this seriously unfortunate turn. I mentioned that it was hard to see him, and it is, but now I see the same beautiful Peter through the tubes and tape. Minute-by-minute, with each mechanical breath, his lungs will heal themselves.

Peter is essentially in the same condition this morning. His vitals are stable. The ventilator pushes air into his lungs, but his lungs still need to absorb the oxygen, and thankfully they are. Yet something bad is going on in his lungs and his doctors aren’t sure that it’s pneumonia. He never really had a fever and some blood counts contradicted a pneumonia diagnosis. It takes a while for the cultures to grow and identify, but maybe it’s viral. They are bringing in a specialist from neurology and infectious disease to help.

If this sounds weird, it is. It is for a couple different reasons. First of all, it is a freak occurrence to have a patient be released from ICU after surgery, only to be re-admitted almost immediately. Secondly, Peter has been fighting for his life against cancer. Today he’s fighting against… something else, some infection? Whatever it is, its origins aren’t even necessarily related to the surgery, much less cancer. Sure, he wasn’t in much condition to fight infection after surgery, but what it is and how it started are open questions.

Now for the good news. Ty and Erika were debriefed on the tumor pathology report. The doctor said that Peter has never been in a better place in his fight against cancer. He felt that the neuroblastoma was old and beat up from the chemotherapy. He did not feel that this was new, aggressive neuroblastoma. They were very pleased with what they found. In fact, their plan for further cancer treatments would NOT include chemotherapy. They would just radiate the site and try to work his way into further antibody treatments.

That news is very exciting, given that the scare of recurrent and aggressive cancer has been hanging over our collective heads for days. But in order to finish that fight, he needs to win this immediate battle. A sign of hope is that only his lungs seem to be affected right now. His other organs appear healthy and functioning. His lungs are taking oxygen. It’s just going to take time. It could be up to a month on the ventilator, but hopefully less than two weeks. They will look for slow and steady improvement over a week and evaluate. The oxygen and drug levels will be manipulated little by little to see how he can do on his own. And we all know he’ll do great soon enough.

Peter was stabilized overnight. The respirator has moved his oxygen level up. We believe he is moving in the right direction. We’ll take that, but it’s no less scary today.

eleven of us, including Peter’s sisters, flew out to Ny early this morning. We’ve taken turns seeing him. He has tubes down his throat and nose, and IV lines coming out of his feet and arm. The respirator is pumping air into his lungs. Peter is intentionally paralyzed so his setup isn’t disturbed by movement. He has tape on and around his mouth and nose. His eyelids are slightly open, but his eyes don’t move. We can grab his hand and rub his arms and head while we tell him how well he’s doing and encourage him. It is the hardest thing to see him right now, but we just know he hears us and is excited that his sisters have come to see him.

While writing, Grandma Barb said he moved his eyes a bit. Erika asked how he’s doing and asked him to squeeze her hand. He did.

It’s 7:00 PM CST. Peter is in critical condition. The pneumonia is attacking both lungs. He’s going on a ventilator for a minimum of two weeks, as they throw every antibiotic possible into him. He will not be responsive for some time.

They’re trying to get him back into ICU. I don’t know what else to write. Just pray.

It’s only been a little bit since Matt posted, but as happens in these situations, we’ve just learned that Peter has a “big pneumonia”. His sats were dropping overnight and required them to increase his oxygen, which is the opposite of what they were hoping to do when we got over here. They did another chest x-ray this morning and are starting him on 3 antibiotics for coverage. They will also be drawing blood cultures soon. His breathing is clearly more labored today and he is sweating a lot; probably because he is working so hard. This is somewhat worrisome, although we hope it will resolve quickly. They hope to keep him from going back to PICU, and said there is an “immediate care” area here at MSKCC that we may move to, to make sure he stays stable. His sats are low and heartrate high so the nurse is on her way to turn up the oxygen again. Please pray that this will resolve quickly with the antibiotics and no major problems!
ps. Thank you for your interest in the t-shirts!

Peter moved back to the hospital (out of PICU) late last night. There isn’t really anything too new other than that. He’s about the same and drugged up pretty good. There isn’t any news back from pathology on the tumor and they haven’t had a more detailed debriefing on Peter’s overall battle. The days are still consumed by recovery, hour by hour.

I ordered the Peter’s People t-shirts this morning. And I had to order enough to cover all 140 shirts that were ordered. Are you all great, or what? Thanks so much. The proceeds are going directly to help Peter and that feels good. When I get all the math done — which takes me longer than some — I’ll post the final contribution figure.

It’s Tuesday and things haven’t changed too much. Peter remains as still as possible to avoid pain, so even eye contact is rare. He did get up and walk to the window and stood for about 10 minutes. He took a ride on his pole for a little ways. He occasionally coughs a bit, but hopefully the coughing will increase; Some good coughs are necessary to clean out those lungs, but it just hurts too much still.

He should be turning the corner any time, and if it’s like the surgeries before, once he turns the corner, he starts perking up quickly. It is likely that they will be moved out of ICU today and back into the hospital. When I spoke with Erika, they were checking on room availability.

Thanks to our friends, Matt and Allison Slater, for opening their home to the Eigner’s during their time in NY. They live just a few blocks from the hospital and Erika and Ty have been able to alternate between sleeping there and in the hospital. Peter has also stayed there during consultations and before checking into the hospital. He makes great use of their Ms. Pac-Man tabletop arcade game.

Just a reminder that today is the last day for t-shirt orders. Over 85 more shirts 100 more shirts have been ordered so far! Thanks so much.