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| Zack loved the boat! |
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| at Nana and Poppa’s |
My parents arrived just after midnight and were escorted in a golf cart through security and customs- thanks to my sister. They told me later, that when they saw the cart for them- they thought that they were too late, that Zack had died. They both had a special relationship with Zackie- my mom was one of the few people comfortable with all the meds and gtube feeds.
I can remember that I must have been taking a break from the room, because my parents had been taken in to Zack’s room without me- when my sister said that they were here- I RAN down the hall to meet them at Zack’s bedside. We all cried together and I was so thankful they were with us. We spent the next hour telling them all that happened and then we felt that Paul and I could take turns and sleep in the ICU waiting room- my parents and other family members also stayed that night.
Whenever a nurse needed to talk to us or there was an update, we would wake each other up. I remember that I kept asking the nurse to check Zack’s pupils….they were not as reactive as before, a sign of brain damage….I worried again and knew that they would soon repeat the EEG.
In the morning, my parents went to my house to be with Ty and Jayden. I was SO thankful that their Nana and Poppa would be with them and I could relax a bit, knowing they would be so thrilled. I spoke to Ty in the morning and I can remember clearly saying that Zackie was very sick. He asked if he was sick, like when he was born and I said yes. That was all I needed to say at that time, to let him know that this time was different and this time I couldn’t say that he was going to be just fine and home soon.
Facebook posts from that next morning-
“Hi Everyone…quick update. Zack is almost off his heart meds and seems to tolerate it. He is hooked up to EEG to monitor brain reactiveness and we are eager to hear some more results. The Drs are coming in surprised that he is still here today…Clinging too all good signs of hope today.”
After yesterday’s grueling day of the most painful and emotional decisions and news about our Zackie, we were not sure he would see today. His biggest issue was still the bleeding in his abdomen, even with the surgery and suction. While they had opened up his belly to relieve the pressure on other organs , he still had bleeding- they weren’t sure where. The surgeons were happy with his belly getting softer, but they considered extending the incision to allow for even more drainage- his organs were in distress. We had to wait to see what happened next. He was still fully on a ventilator to breathe, but they considered adjusting some of the support as his lungs became more open. All numbers, oxygen levels, temperature, seemed status quo and we were all watching them closely. Paul and I had learned the numbers, what to look for and when to ask the questions- the nurses were AMAZING and really never once made us feel that we were asking too much or bothering them. We appreciated their gentle nature with us. We told them stories about Zack and his brothers. They could tell how truly special he was and it seemed they were also rooting for him.
When Zack’s main doctor, Dr. P, walked in the room that morning, he and the others were surprised that Zack was holding on. He hadn’t expected him to live through the night. When I asked him with a smile, “Didn’t I tell you my son was amazing?”, he smiled back and said “many parents tell me that every day, but yes, your son IS amazing”. Some of Zack’s cardiologists and critical care docs came to visit him as well as some of our lovely nurses from his first months of life at SickKids. It meant so much to both Paul and I that our son had been remembered by them. The hallway outside the ICU rooms was so unreal- it was buzzing all day with monitors, doctors, parents and machines making crazy noises. One mother, who’s child was a few doors down, gave me a beaded bracelet for luck.
The day continued and we were smiling a bit and breathing a bit better knowing Zack was at least not declining right now. We also learned that we had reached the top of the waiting list for the Parent’s Room (hotel-type room) so that we could have a place for our belongings, have a shower and get a real rest. (I later met the amazing mother who had raised money to refurbish these much needed rooms, in honour of her son. I told her how grateful we had been to be able to have an ounce of comfort during those 2 nights). I had a shower and truly felt like a new woman- I wanted to keep strong for Zack and I was reenergized.
We had amazing friends and family stay with us that day, making sure we always had a drink or were offered a snack (we hadn’t eaten in 4 days). A few friends; Jana, Sharon, came down to deliver a tea or just visit with us. We were so appreciative for the time that they took to visit us. Zack’s nurse came that day and she cried with me at Zack’s bed. We couldn’t believe our little Zackie was no longer driving us crazy throwing his food on our floor or climbing the stairs when we weren’t looking. We missed THAT Zack so much. We had one of our favourite photos on the bulletin board, and I couldn’t look at it. Seeing his smiling face, our three boys together was too much for me to take- I felt nauseous with each glance….where was that smile?
Late in the afternoon, we asked the SickKids Chaplin, who was there to say prayers the night before Zack’s heart surgery when he was only 5 weeks old, to “baptize” our son with our family and closest friends in the room. Zack’s Godmother, Paul’s brother and wife, my parents, sister and her husband, my best girls Jill and Kathryn and our dear friend Denise created a semicircle at the head of Zack’s bed. As the Chaplin said his prayers, we repeated softly in unison. He brought a shell and in it, he put holy water to bless our son’s head and welcome him into God’s protection. The emotions were raw and deep and we were all crying and leaning on each other for comfort. We each had a chance to whisper or share a message to Zack and I will never forget Paul’s words to our son. He took holy water and touch Zack’s feet “they said you would never walk”, he took more water and touched his lips “they said you would never speak”, again to his head “they said your brain wasn’t working as it should”…. in that moment we were all reminded of the incredible ways in which God had already been so much a part of our life, through Zack. We saw His miracles, in our little boy.
That evening, we told several of our support group to leave and we would be fine, now that Zack was coasting along. My parents went home again to our boys. Paul’s parents, sister, and niece came downtown to join his brother and his wife, who had never left our side. His parents hadn’t seen Zack in a long time, but came to see him as it would likely be their last time. While I had some issues with having them visit after so long, I knew that it was the right thing to do. We didn’t want to deny anyone from seeing our son and saying their goodbyes. They had a visit, cried with us and then left.
Paul and I just needed some time to talk and just “BE” with Zack together. Paul took the first shift sleeping, while I slept upright in the chair in Zack’s room…we wanted to be close to our son. I would move my chair to his bedside and rest my head on his bed, drifting to sleep several times. I put vaseline on his dry lips, washed the EEG solution from his beautiful curls and helped the nurses change his soiled bedsheets. I asked to be the one to lift him- while two other nurses assisted, I held my once 26lb child- he was now over 40lbs. He didn’t even feel like my Zackie…that was such a sad moment. We had struggled all of his life to have him gain weight, now all I wished for was my skinny little baby boy..
Facebook:
“He is on the highest setting for a ventilator flow that any of the nurses have seen…our Zackie is always making records…they are starting to wean him down very slowly.”
Email to our amazing friends, family and Zackie’s incredible team;
We can’t thank you all enough for the overwhelming support. We know that Zack has inspired so many of you and that you all believe in him. We feel your strength and it is getting us through these dark days and hours.
Zack is a fighter- he always has been. As we see him fight again for his life we are so amazed and inspired by him. We are also watching for signs that he’s just had enough. We are missing Ty and Jayden horribly and thankful for incredible family and friends trying to make their lives as normal as they can be.
Please think of your favourite Zack story, as I will be starting our list on my blog today…www.tjzmommy.blogspot.com and we’d love to know what memories you have of our precious little boy. With our love and gratitude. Hold us all in your thoughts and prayers.
From Twitter:
tjzmommy Please share your stories about Zack.. Sharing stories of our son- please add yours in the comments.
BLOOM - Parenting Kids With Disabilities
March 8, 2012 at 10:18 pm (12 years ago)So glad to hear about all of the ways you were able to comfort your little boy. I remember putting vaseline on my dad’s lips too. Those are the things that make a difference xo