So many good people have been checking up on me this last week asking how I'm doing.
Yes, I know .... one minute, one hour, one day at a time.
So many good people have been checking up on me this last week asking how I'm doing.
Below are the reflections shared by the other speakers at Jack's Celebration of Life.
BRIDGET (Jack's cousin)
Hello, for those of you who don't know me, I'm Jack's cousin Bridget, and up here with me are some of Jack's cousins on his mother's side of the family.
Growing up with a large extended family, your cousins are usually your first friends and like every friend, they are in your life for a reason and have something to teach you. Every family has a different vibe and those who know our family might describe us as intense and assertive. And we are intense, we are intense in our love for one another and assertive about what we think is right. We’ll be the first to tell you, we would agree with your opinion, but then we would both be wrong. Many of us have strong personalities and do not have a problem voicing our opinion. Like grandpa always says—lead, follow, or get the hell out of the way. Jack was unique in that his expressions spoke louder than words ever could.
A family is not measured as one unit, rather it is measured by the sum of its parts and each person within the family helps define and shape its dynamic. As our cousin, Jack has influenced our lives in immeasurable ways. By having Jack in our lives we have learned that one can get his point across in many ways and that laughter truly is the best medicine. We have all spent time with Jack and he has affected all of us in different ways. Some of us, like myself, spent the summers with him just after he was born, while others were there as he was growing up. But no matter how we spent our time with him, each one of us had our own unique relationship with Jack.
I want to share with you Jack's last day. I want to share it, not only because you deserve to hear it, but because I need to tell it.
As I said in my last post, I fully intended to leave Ryan House with Jack. While things didn't turn out the way I planned, things turned out the way they were supposed to and I'll share with you why.
After a rough Saturday morning, with pain still an issue for Jack, the hospice doctor, Dr. Shaw, increased Jack's pain medication. Jack slept most of the afternoon and through the night. He'd open his eyes when we repositioned him or changed him, but for the most part, he appeared comfortable after getting more pain meds on board. Around 6:30am Sunday morning, one of the Ryan House staff woke me up because Jack was desatting and they were having trouble keeping his sats up. The desats on Sunday were different than what we had seen in the past. Typically when Jack desats, it's due to pain and it's very obvious from his facial expressions that he is in pain. On Sunday, Jack would open his eyes when he'd desat, but there was no expression of pain. He was also desatting quickly and significantly - into the 60s and 50s. It took longer to get him back up when we bagged him. I called Jack's pulmonologist and asked him if maybe we needed to increase the vent settings because Jack had more pain medication on board. He had me increase a few settings. Jack was also requiring significantly more oxygen. Jack continued to desat throughout the morning. By noon, he was desatting about every 30 minutes or so and would require bagging to bring him back up. Again, very different this time because the desats didn't appear to be pain related. I stayed in Jack's room the entire time because I wanted to be there to bag him when he desatted. The Ryan House nurse told me that she would stay with Jack and not leave him if I wanted a break, but I couldn't leave him.
That afternoon, I sat down with Dr. Shaw and we talked about what we were seeing. After observing Jack all morning, what I felt in my heart was that now that the pain was controlled and Jack didn't have to focus so hard on getting through the pain, he was announcing himself and he was telling us he was tired. He was just so damn tired. Dr. Shaw agreed.
Those close to me know that my biggest fear was that some day we would have to make the decision to discontinue ventilatory support. It made me angry just thinking about having to make that decision. Having made the difficult decision to put Jack on the ventilator fifteen years ago, there is no way we should now be asked to discontinue that support.
Recognizing that Jack was telling us he was tired and ready to go, Dr. Shaw and I talked about how it would be if we decided it was time to make the difficult decision. I called Mark and asked him to come down to spend some time with Jack because he needed to see what was going on so that we were both in agreement with any decision to be made. In my mind, any decision to be made would be made Monday or even later in the week because Dr. Shaw was going to give Jack some different meds to see if they would help improve his breathing.
After Mark got to Ryan House, I went home and called Jack's St. Louis neurologist. We talked, she agreed with me, she agreed with Dr. Shaw and she cried. No sooner had I hung up from talking to Jack's neurologist, then I got a text from Mark that said Dr. Shaw thinks I should get back to Ryan House as soon as possible. I grabbed Hilary and Eric, called my sister, my aunt, Kristi, close friends and had someone go get Mary from work and told everyone to get down to Ryan House if they wanted to see Jack. When I got to Ryan House, I saw Jack's nurse come out of Jack's room and I fearfully asked her if he was still here. She said yes, but she told me that Dr. Shaw (who had since left) wanted to talk to me on the phone.
During the time Mark was with Jack after I left, Jack was desatting about every 15 minutes and it was taking a very long time to bring him back up with bagging. I got on the phone with Dr. Shaw and she said that she thinks Jack is trying to tell us he is ready to go now. It wasn't possible - or fair to Jack, to continue to bag him indefinitely. I have to share with you that by this point, Jack had already begun his final journey. There was no longer any recognition in his eyes.
It took about an hour for all my family to arrive. They moved Jack's bed to a room called the Sanctuary - a large room where families can gather. I told them I wanted to hold him, so they handed him to me and took the bed out of the room. They gave him additional meds to make him comfortable. What is significant at this point, is that the ventilator was no longer supporting Jack. He'd desat and we would bag him and then reconnect him to the vent, but he couldn't sustain his sats beyond a minute or so. The last hour of Jack's life, I held my precious son on my lap and Mark bagged him while we waited for all my family and Dr. Shaw to arrive. The vent was on, but was not connected to Jack. By this time, I took the pulse-ox probe off Jack and threw it. I didn't care what his numbers were. It just didn't matter anymore. Once Dr. Shaw arrived, she gently took the ambu bag out of Mark's hand and Jack was finally free. Dr. Shaw listened to Jack's heart several times before she told us it had stopped beating. At 6:55 pm, Jack was safe in the arms of our heavenly Father.
Dr. Shaw told me that Jack did not take a single breath after we stopped bagging him. He was so done. The final gift my beautiful boy gave us was that we didn't have to make the decision to remove him from the vent. Jack made that decision himself. There was absolutely nothing we could do to get the ventilator to support him even if we had wanted to.
I would never have believed there could be such a thing as a "peaceful death" if I hadn't seen it with my own eyes. Jack's death was remarkably peaceful. I'm glad the kids were there to see it, so they could see the peace and not be afraid that it was a scary time for Jack.
I held my precious boy for a couple of hours and Mark and I had time alone with him after everyone left. The hardest thing I ever had to do in my life was give him over to the mortuary people. I will never touch him, smell him or care for him again. I find myself going into Jack's room all the time to check on him. But, he's not there.
When I say I find comfort in knowing that Jack is no longer in pain, that he is at peace and enjoying the rewards of heaven, I don't say that lightly or as a way to console myself. I know with absolute certainty that Jack is no longer in pain, that he is at peace and that he is in a most amazing place. And that knowledge is the ONLY thing that gives me the strength to go on.
So it must be ...
Onward my friends, onward.
On arrival at Ryan House
Thank you for riding along with us on our journey.