Author: Uncle Matt

All in all, it was a good day. This morning when I arrived, Peter was off the BiPAP (big face mask) and just had the oxygen in his nose. Throughout the day he rotated between the BiPAP and nose oxygen every two hours or so. He started the day pretty jittery with withdrawals from the narcotics and progressed steadily into the afternoon. In the late afternoon Peter was as alert and interactive as we’ve seen him.

And then he suddenly threw up. He felt well after he did, but then he vomited a couple more times in the evening. This can be a symptom of withdrawal from two weeks of meds, but it’s still a little scary. He doesn’t have a fever or anything.

One highlight today was when he told Ty and I that he wanted to stand up (in his scarcely used faint voice). Together we lifted him beneath his arms all the way up to his feet. He worked his feet beneath his hips, still on the bed, and held maybe 3/4 of his weight for about five seconds before giving out. His muscles have atrophied significantly. Overall it was a comfortable day and I expect it will be even better tomorrow.

Peter had a chest x-ray around noon that showed his lungs weren’t as inflated as they’d like. Although it didn’t cause any alarm, they put him on the BiPAP (a bigger face mask that gently assists breathing) as a proactive measure. He was doing well without it, but they want slightly bigger breaths to keep the lungs inflated. He also had a fever in the early afternoon, so antibiotics are being administered.

Overall he’s doing great. His fever has been gone during the late afternoon and evening. Shortly after the fever broke and he woke up, his parents coaxed a few smiles out him with some friendly teasing. It’s hard to see the smiles beneath the mask, but they were there. When he’s awake, which is less than half the day, he’s often agitated or uncomfortable. During this time, he’ll roll himself over, kick his legs, try to boost himself into a sitting position, or try to lunge himself further up the bed. It’s not fun to watch him struggle, but we decided this type of agitation is great, because he’s using his muscles, his heart rate rises, and he’ll be naturally pushing his lungs along. In that context it’s phenomenal to see him so active.

Before we left tonight, we had him smiling more. He’s by no means chipper. But he’s on his way.

To all of you, Peter sends a “thumbs up”.  This was taken late evening on Wednesday (his left thumb has a monitor taped to it).

Peter spiked a fever during the night, but it was quickly controlled and the plan was only slightly delayed. At about 9:30 AM eastern, the breathing tube was removed. We had to leave the room, which said to me that it can be a bit of a process, but it took less than a minute. We returned immediately to find Peter calmly breathing on his own under an oxygen mask. Ten minutes later, the oxygen mask was removed, replaced by a simple oxygen tube that blows some oxygen in his nostrils.

It was exciting to see more of Peter’s face and an unobstructed mouth and it’s very exiting that he’s breathing just fine and keeping his critical numbers in check. Since the excavation he’s had bouts of discomfort. We expect him to just tell us what the problem is, but sound and words remain difficult. It could be general discomfort in his throat or lungs, it could be withdrawals from the medications. But the spells of discomfort haven’t lasted too long. When I left to write this post, he was napping peacefully.

We don’t know what the next steps are, but little things would mean so much. His first sip of apple juice will be triumphant. Maybe he can try that in 12 hours or so. The staff is impressed with his progress and equally impressed with his demeanor. He’s cute, sweet and cooperative under very uncomfortable conditions. Imagine if they met the real Peter.

We found out about 30 minutes ago that Peter’s great grandpa Art passed away peacefully this morning. As Ty said, “Now Peter has one more angel watching over him.”

After spending more hours bedside I can provide more details on exactly how Peter is doing. First of all, he looks better than he did 7-10 days ago. His tongue used to be sort of swollen right out of his mouth under the paralytic and sedation, but now that he’s frequently awake and alert and his mouth and eyes look a little better. His eyes are very irritated and I think it hurts to keep them open long.

When he would wake up today (Tuesday), his face scrunches up and reddens from various discomforts. His throat may be sore, his bedsore might be irritated, his eyes may hurt, or he may need to go poo, which he’s refusing to do into a diaper (or maybe it just hurts to try). In any case, it’s difficult to detect the exact problem through questioning, nods, and sign language. Ty and Erika show great patience through the frustration. Usually a simple adjustment is made, the redness leaves his face, and he falls back to sleep.

I’ll get an update on how the vent removal goes as soon as possible tomorrow.

Our family had another scare this week. Art Walen, Peter’s great grandpa (also Erika’s and my grandpa, also Grandma Barb’s dad), suffered a major heart attack, or congestive heart failure, in the middle of Sunday night. Grandma Barb headed to the hospital at 2:00 AM Monday morning and upon arrival was told that her dad probably wouldn’t make it. Some time later, Art woke and began lucidly speaking to Barb. He stabilized and is doing relatively well. He somehow didn’t suffer major damage. Peter’s great grandpa and great grandma instilled values into their family that are helping Peter today, generations later. This week Art showed a little fight of his own. Keep fighting, Grandpa.

Peter continues to inch forward, even if things have been a little more “exciting” the past couple days. I arrived in NY last night and spent some time with Peter this morning. The doctor just visited with an update a plan of action. Now Ty and I are at the Ronald McDonald house to use the internet.

Erika posted yesterday morning with an update about the happenings on Sunday. Monday was pretty smooth and the fever subsided. Last night, however, didn’t allow Erika much sleep. Peter was very awake and fighting to get his tubes out of his mouth. He has IV lines in each foot and was kicking at those, as well. Two nurses and Erika struggled to restrain him as he was showing some real strength. It’s not fun to see him agitated or scared, but it’s probably a good thing. The doctors have continued to lower his medications and reduce the vent’s workload. As he becomes less sedated, some fighting seems natural and a sign of life.

The doctor this morning announced the plan over the next day or two. The various medications will be lowered today and then fairly drastically at 1:00 AM (other meds will be given to fight withdrawal). Peter will become more alert and become very agitated, maybe around 5:00 AM. Once he begins to really put up a fight, the ventilator will be removed. Peter will begin breathing on his own under careful surveillance. A BiPAP machine can assist his breathing as necessary, but the breathing will be largely his responsibility.

The longer he stays on the vent in critical condition, the more he risks various infections. The doctor said that the ICU isn’t really a healthy place, so it’s time to push him forward. I don’t think this step would be taken if she didn’t feel good about his progress. His lung x-rays show slight improvement each day and a significant leap compared to this original x-rays. His cultures are negative at this point and his temperature is under control. If any of these things change for the worse today, the plan would likely change.

It should prove to be an interesting 24 to 48 hours. It will be a serious challenge to Peter. It will be challenging on his parents (and me), since we’ll probably see him uncomfortable and possibly scared. Yet it is very exciting that he may soon be back to supporting himself and marching on towards his next challenge.

The photo below is the night before his last surgery, with Dad, in between skeet-ball games.

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.