Saturday, December 14, 2013

Tribute to Matteo and his Amazing Parents


One of the goals of the blog is to inform those around us of what our lives are really like.  Another goal is to achieve some sort of therapeutic relief from writing.  

This is the hardest and most difficult piece to post for many reasons.  We met the Serafano Family at the 2013 MTM Conference.  At the conference we had 6 people in our party and therefore we often had our own table for meals as the tables only had room for eight.  At one special dinner the Serafano family joined our table. William had the wonderful opportunity to meet and hangout with his MTM brother Matteo.  Matteo's parents, Don and Nancy, are the kindest and warmest people we have met.  They were quick to talk about their journey and their wonderful son.

MTM families from around the world are connected through a closed Facebook group.  Don and Nancy are always willing to respond to questions posed by other families.  On September 27, 2013 a post from Don caught us off guard. After reading that first post we kept checking Facebook as often as we could to learn of updates. What you are about to read is some of the most touching and moving writing we have ever read.

The following are Don Serafano's updates:

September 27, 2013
"Cardiac Arrest likely caused by a seizure. Paramedics got a pulse after 15 min . We think they stopped the seizure at Huntington Beach ER & it resumed after we airlifted to Kaiser LA. He has been seizing since we got here (8pm fri ) they have tried like 8 different meds- Kepra, Ativan, Dilantin, Versed, blood pressure dropped @ 1 point, phenobarbital, central line, pinofal, EEG, EKG, chest X-ray, labs, CT, blood gas all done stat he is sedated. They will keep him comatose 4 the next 24 hrs. Seizure continues"

September 28, 2013
"Matteo's brain is quiet. He looks like he is sleeping. I cleaned his neck and changed his trach ties. Now is the time to wait and listen to him breathe."

September 29, 2013
"Some of the staff refer to Dr Johnson as Dr J. He has been caring for Matteo since our first trip 5 1/2 years ago to the LA PICU. I was happy that he personally put in Matteo's central line yesterday.

Matteo has had a quiet, stable restful night."

October 1, 2013
"We bathed Matteo slowly and carefully while playing some of his favorite bath time music. As we washed his hair, we were able to wash out some of the residue from the EEG leads. 

Seeing his hair reminded me that I had used the Flowbee to cut his hair two weeks ago. He never enjoyed getting his hair cut but he tolerated it better when he knew that some bath play time followed.

The bathing ritual was very cathartic for us. We cried as we washed each finger and toe. We washed away the glue from medical tape. Nancy removed the bandaid from the lumbar puncture. We massaged lotion into his skin. I applied lip balm.

As if choreographed, Pandora played a song from Matteo's favorite movie, Mary Poppins. Nancy and I softly sang in unison as we washed and cried.

Let's Go Fly a Kite

Oh, oh, oh
Let's go fly a kite
Up to the highest height
Let's go fly a kite
And send it soaring
Up through the atmosphere
Up where the air is clear
Oh, let's go fly a kite

When you send it flying up there
All at once you're lighter than air
You can dance on the breeze over houses and trees
With your fist holding tight
To the string of your kite

O, oh, oh
Let's go fly a kite
Up to the highest height
Let's go fly a kite
And send it soaring
Up through the atmosphere
Up where the air is clear
Oh, let's go fly a kite."

October 2, 2013
"The physical tests confirmed that Matteo left us on Friday and that only his body remains. He looks like he is in a deep peaceful sleep. 

Neurology will repeat the brain death tests tomorrow morning.

The tests were supposed to be done once by Neurology and once by the PICU staff some hours apart to determine if the physicians agree pursuant to national pediatric standards.

Nancy and I wanted to witness the tests. We certainly weren't going to let the lack of a knee jerk reflex that Matteo never had be a determining factor.

We waited all day for Neurology only to eventually learn that Neurology finally figured out that they couldn't complete the tests so the PICU staff should perform the first set at 6pm.

After one shift change, two PICU admissions, the doctor's meal break, we were getting sick with exhaustion. I decided that a peaceful protest was my best course of action. I went into the hallway and laid down on the floor. One of the nurses we know walked over to ask if he could get me anything. I told him that he should think of this as a sit in. He said that he would get the charge nurse for me.

I was able to explain to the charge nurse the difference between what we had been told during the day and what had actually happened. I was successful and we were moved up the priority list.

I can only imagine the look on my face as I swiveled my head to look from Matteo to the doctor as he entered Matto's room. He stuttered and took a 1/2 step back. Remembering that I wanted his cooperation, I explained the problem. He explained the tests and what involuntary reactions each test was designed to provoke and we observed with the staff.

We are continuing to lovely care for Matteo's body by washing him, singing to him and holding him. So many people are praying for Matteo. If a miracle is supposed to happen, it will happen.

Friends and family have all been overwhelmingly kind, caring and supportive. We are surrounded by love. When Nancy and I cry, we are comforted. When we forget to eat, we are fed. When we are too exhausted to walk, we are supported. When we need to be alone with Matteo, our wishes are respected."

October 3, 2013 
"We have been having a day of cuddling, music and singing to Matteo. 

Today's tests and results were exactly the same as yesterday's.

Everything is delayed until approximately 10pm. That time is always subject to change. It takes a great deal of coordination with the surgical teams. Now things are delayed until 1am.

It turns out that Matteo's organs can be donated in addition to what the MTM researchers need. Had we known, we would have requested that One Legacy begin the coordination yesterday. However, without our direct request, there are a lot of restrictions as to when they can talk to us."

October 4, 2013 
"Our World Stopped"

"Nancy and I held Matteo until his heart stopped beating at 4:30am today."

October 5, 2013 
"Matteo's Gifts"

"Nancy and I can't begin to express how much we miss Matteo and how thankful we are to be part of such a wonderful community. 

Throughout this past week, Nancy and I have been able to and will continue to draw strength from each other, our family and friends. The love and support that surrounds us has helped us rise from our bed each day and make the most difficult decisions that a parent will every have to make. 

Nancy and I witnessed Matteo's death twice. The first time was Friday September 27th at 4:30 pm at the end of therapy. The second was Friday October 4th at 4:30 am at the hospital. Matteo's first death extinguished the light behind his eyes leaving only his body behind. Matteo's second death freed his body from this world. 

Even after his death, part of Matteo's body will live on in others. His kidneys and heart valves will help other children live longer and with less pain. His corneas will help other children see the faces of their loved ones and all of the beauty this world has to offer. Nancy and I were told that we would receive more details about the children that Matteo helped in about one year. Matteo also contributed tissue needed by the researchers to help continue the amazing progress that we witnessed at the 2013 MTM-CNM Family Medical Conference.

We had prepared as much as any parent could for October 3rd to be our last day to hold Matteo in our arms. We walked to the hospital from the Ronald McDonald House. Several people apologized for the miscommunications and delays during the prior day that culminated with my 'sit in'. Neurology examined Matteo in the morning and confirmed what we had known for several days. 

We asked the staff to stop drawing blood gasses so that we could spend time alone with our little boy. We took turns cuddling Matteo, sobbing in uncontrollable fits and holding each other. We played lullabies and Matteo's favorite songs. We helped each other get into Matteo's bed by climbing through the ventilator tubing, medical lines and probes. Several times, all three of us managed to precariously balance in the hospital bed at the same time together.

Earlier during our hospital stay, someone had misinformed us that Matteo's organs were not suitable for donation due to MTM. Just about the time that we were ready to talk to the PICU staff about turning off the ventilator, One Legacy talked to us about organ donation. They were going to need many hours to get everything ready including a surgical suite and the surgery team. Had we known, we could have requested to speak with One Legacy two days before. The rules prohibited One Legacy from contacting us until after the second exam confirmed that Matteo no longer had any higher brain functions. One Legacy spent as much time with us as we needed answering our questions and explaining the details. We learned that Matteo's trusted Dr. J would be with the three of us every step of the way and that we would have only five minutes to hold Matteo after his heart stopped beating. 

We knew that our 2012-2013 Anderson Elementary Student of the Year would want to help as many children as possible. Therefore, Nancy and I knew that we had to wait as long as needed even though we were days past emotional and physical exhaustion. The tentative time was set for 10 pm. 

Matteo was exhausted as well. His heart rate slowed and his blood pressure dropped. If they fell below the minimum for too long, his organs would no longer be suitable to help others. We had given our permission to resume treatment. Dr. J and the PICU staff kept Matteo stable. We had time to thank some of great staff that had taken such good care of Matteo during our many PICU visits. They shared our grief. 

Our surgery time changed several times. We gathered our personal items from Matteo's room. This was the first time that we were not packing all of the extra medical supplies for use at home. We selected and downloaded three of Matteo's favorite songs that we wanted to play during our final moments together. 

At 4 am on October 4th, we walked down to surgery with Matteo. At the point where we would usually kiss Matteo goodbye, we changed into clean wear for the surgical suite. I gave the staff my phone so that they could play Matteo's music over the speaker system. 

In the operating room, the lights had been dimmed, divider curtains were placed around us, our music was playing, kind supportive words were spoken, and Dr. J was close by. 

I took off Matteo's g-tube extension. Even now, I did not want to take a chance of pulling out his g-tube during transfer. Nancy and I were seated together. I asked for and was given a pillow to put under Nancy's arm so that we could hold Matteo together just as we did at home. 

The ventilator was turned off and Matteo was gently handed to us for the final time. Nancy and I cried and the staff cried with us. We sang You Are My Sunshine, Let's Fly a Kite and Somewhere Over the Rainbow to Matteo as we held him close to us in our arms and hearts. 

Time passed and Dr. J confirmed that Matteo's heart had stopped beating. At the appointed time, we surrendered Matteo's body to the surgical team and Nancy and I were helped out of the operating room so that Matteo could give what he no longer needed to help others."

October 7, 2013
"Coming Home"

"Nancy and I worried about how we would feel about our house without Matteo. Would seeing all of his things be too much to bear? 

As we slowly drove home, I remembered that Matteo's astronaut Halloween costume would be hanging on his door. How would we feel living in a quiet house without the sounds of Matteo, his nurses and his equipment?

When family offered to be at our house when we arrived, I wondered for a moment if they needed to grieve with us rather than alone. We accepted and they were waiting for us when we arrived. Matteo's little dog, Sunny, was thrilled that we were home. 

Family brought food, helped unload the car and, most importantly, were there for us to help us grieve with them. They helped us make plans for Matteo's memory. 

My only experience with funerals and memorials was attending a few. Like many things, I started on the internet. Nancy and I had talked generally about what we wanted for Matteo but now it was time for the details. 

I forgot to ask the hospital how many days we had before Matteo's body must be picked up. I had signed some paperwork at the hospital. Based on past experience, there always seemed to be more paperwork but what was it and how did I find it?

We knew that we were functioning in a cloud of emotions. We wanted someone to review our choices and family was there with us. 

After we chose a cremation service someone decided to look for reviews. The cremation service actually had good reviews on Yelp. I had no idea that those services were reviewed on social media. 

We wanted to select a place for a memorial to celebrate Matteo's life with those who cared about Matteo and knew us. How many people? It was hard to think. Matteo has touched so many people in his too short life and we wanted to invite everyone that was important to him. 

So many people have helped with things both big and small. The neighbor who refused to let us fix their car after Matteo drove his wheel chair too close. The school bus drivers who were always ready to help including driving Matteo and his nurse to Nancy's school to pick up a forgotten house key. The children that invited Matteo to their birthday parties.
Family helped pick the location, date and time. They went down that same day for the reservation deposit. We are so thankful for everyone's support and help. 

Eventually, it was just the two of us at home. Nancy cried just looking into Matteo's room. Matteo loved his room. As much as he loved doing new things, Matteo was always happy to be home in his room. That first night, I turned on Matteo's favorite turtle night light. The machines were silent. 

In our bedroom, I closed the door the same way I did every night that Matteo had a nurse. Nancy cried because there was no need to shut the door. Sunday morning, I laid in bed. I did not need to get up to take care of Matteo. 

Apria called on Sunday about picking up their equipment. I told them that I would make arraignments and hung up. Had Apria ever called on a Sunday before? Had I ever been able to talk to anyone other than the answering service on a Sunday? Which company owned which piece of equipment? What equipment was still at school? What things did we own? I wondered when and how would we ever be able to sort it out. 

I cried thinking about someone taking Matteo's bed and the empty place in his room and my heart. 

Nancy and I went into Matteo's room together. After trying to take it all in, we started looking more specifically. I decided that I was not going to miss the ventilator, suction and Matteo's other equipment. Those were not Matteo's but merely tools that I used to take care of Matteo. While Matteo's equipment was expensive and complicated, I wondered if I needed it any more that I still needed a diaper pail. 

I looked at the hospital pole for Matteo's feeding pump. We decorated and hung things on it so that the pole sort of looked like a mobile. The things that Matteo liked to grab, push or kick would stay after the pole was gone. 

I saw a video sticking out of Matteo's VCR. Could it be? Yes, it was Matteo's favorite, Mary Poppins. The things that transformed Matteo's room from a hospital room to Matteo's home would stay as long as we wanted them. His pictures, toys and clothing would still be in his room after the equipment was gone. 

As I drank my coffee, I looked out the window at Matteo's blue swing. I remember how much he loved to swing and how he would drive his power chair into the backyard to tell us that he wanted to swing. 

I knew that after the tears dried, Nancy and I would be ok at home because home is where the good memories are."

October 17, 2013
"Matteo's Cremation" 

"Nancy and I witnessed Matteo's cremation two days ago. 

Nancy and I had agreed, some time ago, that we both wanted to have our remains cremated and our ashes scattered at sea. We chose the same for Matteo. 

The water has always been an important part of our lives. Nancy and I were competitive swimmers from childhood through college. I don't even remember learning how to swim. Swimming was just something that I always enjoyed. One of Nancy's first jobs was as a lifeguard and swim instructor at a local pool.

Nancy and I grew up on swim teams. We spent summers participating in Junior Lifeguards and swimming in the ocean. I played water polo for more than ten years and scuba dived. I spent many Wednesdays sailing with my father. We never won a race but alway had fun together.

Matteo was excited when we decided to take him swimming. My Mother always encouraged us to bring Matteo to her home so that he could go in the pool. Matteo loved kicking his legs in the water, splashing with his hands and floating. Matteo would never signal that he was done swimming. If we had let him, Matteo would have played in the water until he fell asleep.

Nancy and I decided that we wanted to remember Matteo while watching a sunset from the beach. By placing his ashes in the ocean, Matteo would be with us no matter how far we traveled.

We had never made plans like this before. As with many things, we started our research on the internet.

There was a wide variation in pricing. We knew that we did not want to have any sort of open casket funeral home type of event, so that eliminated the highest prices. The cheapest option would have been to let the county handle the cremation. Using the county would not have allowed us any control over the process or timing. We knew that we wanted the cremation completed before Matteo's memorial.

We decided on something in the lower mid-range that had a couple of options and a more personal touch.

I read about places that would launch a portion of Matteo's ashes into space or turn a portion of his ashes into jewelry. I did like the idea of Matteo being in space free from gravity but I decided that the water was the next best option and I wanted to spend that money on Matteo's memorial.

Nancy and I decided to keep our original plans for a memorial celebrating Matteo's life and to place his ashes into the ocean.

Nicole made the arraignments to pick up Matteo from the hospital. She handled the paperwork including a permit to scatter Matteo's remains at sea.

One of the options that I wanted was to witness the cremation. I wanted to bear witness to Matteo's entire life from beginning to end.

I was not sure how I was going to feel witnessing the end. I did not want Nancy to feel that she had to attend just because I wanted to be there.

We selected a biodegradable 'pillow box' for Matteo's remains. It was engraved with 'Matteo Jackson Serafano' and 'Forever in Our Hearts'. I wanted the crematorium to put Matteo's ashes directly into our pillow box rather than transfer the ashes myself.

The pillow box would dissolve a few minutes after being placed into the water. It would also prevent us from being coated with Matteo's ashes should there be a sudden shift in the wind while on the boat. This problem occurs more often than you would imagine and Nancy had personally witnessed this problem.

Nancy decided that we should attend the cremation together. We drove to the appointed place at the appointed time. The place was necessarily in an industrial area.

Nicole greeted us at the door and made sure that we had everything that we needed in the waiting room. When they were ready for us, she told us what to expect.

I had chosen the option to see Matteo's body one last time before the cremation began. I was nervous about what I would see and feel.

Nicole assured us that Matteo was in good condition and that his eyes were closed. She warned us that his mouth was open. I replied that he lived with his mouth open.

We were escorted to the room with the cremation oven. The lid was pulled back to reveal Matteo's face. Thankfully, the rest of his body was covered with a sheet.

Matteo's face looked peaceful as if he was sleeping. However, our baby had left us and all that remained was his shell.

After a moment, we asked that the box be closed. We held each other and cried as Matteo's shell was rolled into the cremation chamber. Every aspect was handled with respect and sensitivity.

Some minutes had passed. It was going to take a couple of hours for Matteo's ashes to cool sufficiently so that they could be placed into his pillow box.

Nancy and I adjourned to a pub and waited for a phone call from the crematorium. We managed to eat something. Time passed slowly. Eventually the phone rang. We returned to the crematorium to retrieve Matteo's pillow box.

Matteo's remains are safely at home for a few days. We are going to rent a Duffy electric boat, play some music, scatter some flower petals and surrender his ashes to the sea."

October 21, 2013
"In Memory of Matteo"

I would like to thank everyone for coming to McKenna's on the Bay to remember - and celebrate Matteo's remarkable life.

No matter how long Matteo lived, we would have wanted more time with him. Celebrating his 5th birthday gave me hope for the next five. Nancy and I had saved him so many times that I began to think that we always would be able to so.

Matteo fought to live and breathe from the moment that he was born. His love of life was an inspiration and contagious. I like to think of him now - as being able to run - and breathe freely. One time, I had a dream that Matteo walked into our bedroom and asked us why - we were still in bed - because it was time to play. I hope that he dreamt of flying like we did Soaring over California.

We will be forever thankful that we had Matteo for 5 1/2 years. We will be thankful for all of the wonderful people who helped us care for him and showed us random acts of kindness. We are thankful that we were able to keep Matteo's world big.

Matteo had the ability to smile with his whole body and light up the room. He inspired people and brought out the best in people. His face was very expressive. He got very good answering yes and no questions and looking at or reaching for what he wanted.

One time, Matteo would look at the movie playing on TV with a cry face and then look at me. As soon as he saw me looking at his face, he would turn back to the movie with his cry face. I finally realized that he didn't want the movie that was playing - so I gave him a choice of some others.

When Nancy and I were feeling down, holding Matteo for a while would always make us feel better. We called that Our Matteo Time. When we held him, he would look into our faces as if we were his entire world. What a great feeling. Of course, Matteo's next move was to reach up to tangle Nancy's hair or try to stick his hand in my mouth.

Nancy and I talked about making good memories. We have so many vivid memories of our time with Matteo. When he was in bed and ready to sleep, he would roll onto his left side toward the wall to say "Stop Messing with Me". But then he would look over his shoulder to make sure that we were still standing next to him.

Matteo loved Disney Land and Mary Poppins. It was a treat for him to go anywhere there were people, lights and music. He loved car shows, the circus, swimming, his swing and going fast.

Matteo's favorite Disney ride was the Jungle Cruise. They had one boat that could accommodate his wheel chair. One day he was exhausted and I asked Matteo to show me if he wanted to be all done and go home or more and ride the Jungle Cruise. He was so tired that he could barely show me his answer. Sure enough, Matteo signed for more to ride the Jungle Cruise.

Cars Land opened up during the year that we had passes. My worst idea was the Matter Tractor ride. When it swung to the right, I could hold him close to me. But when it swung to the left, I had to try and hold him and his equipment close to me but not crush him against the side of the seat. We survived but Matteo looked stunned as if he had been mugged. I am sure that Matteo wondered what could I have been thinking.

Nancy and I liked to take Matteo on the car race coaster. With three seats across, we could hold him between us with his ventilator on the floor in front of us. I think that everybody has experienced batteries, such as in their cell phones, that stop holding a full charge. The same was true of the ventilator's internal battery. One time the battery ran out mid-way through the coaster. We just took the tubing off of his trach and he finished the ride like a champ breathing on his own.

Nancy, Matteo and I managed to drive 2,000 miles to Minneapolis and back in July for the Family Medical Conference. I felt like MacGyver working out solutions to all of the expected and unexpected problems. Like most kids, Matteo spent a lot of the time in the van playing with his iPad.

We fought for three years to get Matteo a power wheel chair and I will always be glad that we did. It was tough to teach a four year old how to drive a heavy vehicle but it was well worth the sore toes and holes in the dry wall. We loved that Matteo was finally able to explore his home and outside. It was great that Matteo could show us what he was interested in.

Matteo drove his power wheel chair at school for kindergarten. During recess, he wanted to be with the other children so he drove toward them on the playground until he got stuck in the wood chips. When he realized that he was stuck, Matteo put his head in his hand as if to say "You Guys Figure it Out". The janitor had to get some boards so that Matteo could get enough traction to drive out.

Matteo's mind was like a sponge. I remember watching him put the letters of the alphabet in order. He was always so proud of himself when he learned something new.

Matteo was the Anderson Elementary Student of the Year for the 2012-2013 school year. He was the big man on campus. He had friends and the girls always wanted to try and make him smile. I think that they found that singing and dancing worked best.

Nancy and I cry together because of how much we miss Matteo. But we feel privileged to have cared for Matteo, played with him, and learned from him. Matteo gave us the opportunity to share his extraordinary life. I am sure that Matteo would have said thank you to everyone for making his world so very big.

No matter how much Matteo time we had, we would have wanted more Matteo time.
Matteo will be - forever in our hearts."

Donald B Serafano

I wanted to post this because I have still not figured out what to say to Don and Nancy.  As things were unfolding I could not find the words to match my emotions.  Time has past and I still do not know what to say.

Another reason I want to post this is because his words match the awful thoughts that unfortunately are too frequent. For over a year I have been unable to shake the daily reminders that my family's journey with MTM will likely end in the same manner.  Don's grace and strength has given me a measure of comfort in knowing that I too can be like Don and handle the worst situation imaginable. His words have encouraged people throughout the MTM community to hold their kids a little tighter and spend an extra 10 minutes reading books. 

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