Sunday, January 12, 2014

Jack's Last Day

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.





15 comments:

Kate said...

I'm glad you were with him so you could see his passing was peaceful, and so he could feel your presence. Peace to you Ann. Xxx

Clara Harmonson said...

Ann, I'm crying as I read, please excuse my babble and my lack of being able to write anything somewhat coherent. Jack showed a grace and serenity that could only be his. I'm so glad that He made all the decisions himself. He is completely healed, and yes, that alone is a powerful thought, powerful enough to keep you going. Please know that you are not alone.

Sending you a big big hug. The Lord brings you, Jack and your family to my thoughts very often.

Shari said...

Ann, your journey has been one filled with such honesty, vulnerability and love....thank you for sharing so much of yourself through telling sweet Jack's story. Jack's ability to "speak" through those beautiful eyes guided you through the years and it is comforting to hear that in his final hours, those eyes told you it was ok for him to gain his angel wings. What a truly amazing gift Jack gave to you by making the decision for Mark and you and there was no greater place for him to be than in your arms, surrounded by love. While no child should ever have the challenges that were bestowed on him, Jack taught us all how to love, laugh and be grateful for all that we have. What a gift to us all.....sending you much love and comfort.

Christy said...

Ann, I feel as if I was right there with you. I can envision hearing that pulse ox beep for the last time as you threw it down. Jack took the burden from your shoulders, as you have done for him so many times before. That picture of you and him brings me to tears.

Much, much love to you. I am really looking forward to giving you giant hugs this week. Will be thinking of you constantly as you plan his big day.

Love you,
Christy xoxo

Sarah said...

In tears reading this. I feel as though I was there with you and your family. Your picture is beautiful. Such love. Such grace. From the moment of his first breath until his last. Lots of love!
Sarah

Trish P said...

I relived Olivia's passing as I read your account. The peace that comes and fills the room is something indescribable and yet so awesome knowing that they are going Home. Free from machines, pain, medicines... free to do all the things they never got to experience here on earth. I pray for your family as you adjust to your new normal. It will take some getting to but I know that Jack will be with you the whole time. *hugs*

Suzanne Musial said...

I don't even know where to begin. While I cry for your loss, I also cry for the beauty of your words. Just like we should never have to make the decision to put our children on life support, it's 100x worse to think about the decision to remove it. I'm so thankful that Jack did not make you decide. He knew what you needed and he gave you that last, precious gift which is so amazing. He went on his own terms surrounded by endless and unconditional love. He was ready and he made sure you knew and would not have to suffer the burden of that decision. I know that he is free and without pain now. Thank you for sharing this, and his life, with all of us.

Anonymous said...

Jack was an amazing spirit from his first to his last moments. Thank you for sharing him with me and with all of us. Hugs from Denver

Susan said...

Thank you for sharing the details Ann. I am so happy to hear how Jack went peacefully and was free from pain. I am so happy that you got to have that special time with him at the end. My heart aches for you thinking of you walking into his room to check on him. It's going to take awhile to find your new normal. I can't wait to give you a giant hug. Much love!

Dana said...

So thankful you saw his peace. So thankful there is no doubt where is his and who he is with. It's also a gift that the family could be there and that you could hold him.

He fought hard. He finished his work.

Jack touched so Many........

Love you. Wishing I could send you a big hug and be there.

Amanda Hollingsworth said...

Ann, I remember many years ago we were having a discussion about being able to hold our boys. You told me to hold Jacob "now" because one day he'd be too big. All I could think when I saw this picture is that I'm so glad you were able to hold him "now" and that he felt your love and peace and gentle spirit surrounding him and guiding him. ♥

Jen said...

Ann ~

Thank you so very much for sharing with us as you always have. Always in such a beautiful, honest, and detailed way. I haven't followed your journey for too long, but even so - it doesn't take but one post to know the love you share is one of the greatest.

I was so happy to read you didn't have to make yet another decision, and that Jack went in peace. As I'm sure you already know by what you wrote of your kids...I believe those two things alone will carry the broken pieces of your hearts a great distance as well.

I can relate similarly to all you said…

'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.'

It's all I've got. It's all I focus on. It's all I have to go to when I am feeling bad or sad about our daughter Aviana. And the great part is…it works, I can't stay in the sad for too long. What a blessing.

I can see Jack now…and he's one beautiful sight : )

Love to you all,

Jen

Jen said...

I forgot, your picture took my breath away...

kathie said...

oh ann.....your sharing helped us all, and i hope it helped YOU the most...bless jack in heaven, no longer in pain, with those who were there waiting for him.....much love to you, and your family, and to jack, who is watching and no longer tired.....

ssouth said...

I waited to read this one when I could be alone and the kids wouldn't see me cry...again. Your words conveyed the peace that must have been underneath all the sadness in the serenity room. Your pieta moment pictured at the bottom of your post captures the moment when Jack's journey transcends this dimension with incredible love, just as he came into it. Thank you for having the courage to share the difficult realities. You've helped us all see and remember the imprints of where Jack's been on his journey and it has helped us along ours. xoxo