On Wednesday, October 28th, Willy switched back from Todd's house to ours. Todd and Trish have the kids three days a week and we have them four. It was a normal switch, normal week. Willy had some extra phlegm and what appeared to be the start of a pesky cold. Of course we know there is no such thing as a pesky cold in lissencephaly kids but it didn't appear to be too bad. Yet. Willy went to school Thursday and Friday. Friday they celebrated Halloween. I'm not a very crafty mom so I put Willy in his super comfortable Marvel comics pajamas and taped a Super Willy sign on his chest.
The school had a party. There was a DJ. His teacher, Claudia, said that he enjoyed the DJ and the music (he always loved music,) and it was in general, a good day. The only downside was the darn phlegm still congregating in his chest. By Friday night and into Saturday morning he had a full blown fever and was fairly miserable.
I did some Willy maintenance over the weekend which included some oxygen support and breathing treatments. By the time he went back to Todd's on Sunday afternoon he was still under the weather but not worse. "Not worse" is lingo in our world that means all is okay - for now.
I never worried about Willy when he was with Todd. Todd took fantastic care of Willy and had all the same tools at his house that I had. But by Monday he took a turn for the worse. Tuesday morning I had a talk with Todd on the phone and heard just how bad Willy sounded when he coughed and breathed. Todd and I decided it was time to call hospice and just check to see if it was pneumonia or if an antibiotic was needed.
On Tuesday afternoon, November 3rd, the hospice nurse diagnosed Willy with pneumonia. He's had pneumonia before - dozens and dozens of times. But this was his first time with pneumonia since we put him on hospice. This meant no hospital. It meant we nursed him back to health ourselves. We had the tools, we had the knowledge, and we were ready. Wednesday we did the switch back again. Todd brought Willy back to me at 1 and explained all the protocols he'd been doing for Willy.
Normally when we switch back it's quick. Here's this, here's that, so-and-so needs this slip signed, Willy had his afternoons, etc. This switch back was different. Todd stayed a bit longer. His eyes looked sad and tired. (He was tired. He'd been up every two hours the night prior tending to Willy.) He told me he had "the talk" again with the hospice doctor who had been out that morning. When will the end come? When will it be time to let him go? Would it be this time? Probably not. But it's their job. They have to continue to provide us with options; especially when the patient - in this case, our Willy - is sick.
I asked Todd what he thought about this bout of pneumonia. He just shrugged and looked at Willy with sad eyes. He gave Willy a kiss and left.
I got Willy comfortable in his bed and gave him all the medicines it was time for. He wasn't comfortable at all. He thrashed back and forth - especially when I put the oxygen cannula on. He never liked the oxygen cannula but he never thrashed back and forth. I took turns putting it on and taking it off. When the morphine would kick in he'd have a period of rest and calm for about two hours. I noticed there was starting to become a delay in between his breaths so I took a video and texted it to Todd. I thought it was just the morphine putting him in a deep rest.
Finally we were ready to put everyone to bed for the evening. There's no way I could keep Willy in his bed. (He rooms with Grant and I knew I'd be in there on and off all night.) Ted told me to put Willy in our bed and he'd bunk in with Grant.
I set up a little nest in our bed and brought all my Willy supplies into the room and settled in for a long night. I wanted him to have the oxygen. I put the cannula on and he thrashed his head on the pillow like I have never seen before. He tossed his head back and forth and scraped his nose on the pillow until the cannula came out of his nose and stuck to his eye or ear. I was frustrated. He needed the oxygen. I needed sleep. He needed sleep. From about 11:00 p.m. to about 12:00 p.m. we fought over the oxygen. Finally about midnight I took the cannula off. I probably should have done it an hour prior. The minute I took it off, he rolled onto his side with his head back at a 90 degree angle which is how he liked to be. He put his arm around his bear and scooched back into me. We were spooning and I had my right arm around him, tucked under his armpit. He peeked open an eye at me and it was so sad. His eyes were so puffy and red. I turned the light off and hoped for a little sleep.
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| The last photo of Willy taken while he was here with us alive |
Right away I noticed the delays between his breaths were getting longer. First they were 6 seconds.Then 7. He wasn't struggling. Morphine allows for more effective breathing so I chalked it up to the morphine. I texted Todd who was working and told him what was happening.
Shortly after midnight the breaths were about 7, then 8, then 9 seconds in between. At that point something changed. I turned on the light and checked his fingernails and they were dark blue. I texted Todd and asked him to come. He said to go ahead and call hospice. I put my hands on Willy's chest and his heart was still beating, but very, very fast. He was still breathing but the breaths were getting fewer and fewer in between.
I didn't have the forethought to tell him it was okay to go. I wasn't there. But I told him I loved him.and kissed his cheek. When I couldn't feel anymore breaths, I went in to get Ted and asked him to check. The few moments that Ted was checking for a pulse and breaths, I was screaming. The feeling is indescribable. You know. But you're looking for one heart beat. One breath. This is too quick. This isn't how it was going to go down. We were going to spend some time together the next few days and get him better.
Ted just looked up at me and said he was gone. Grant and Gabby both heard me crying and came in to check. I was absolutely not prepared to tell them anything so I just told them Willy was having a rough evening and to go back to bed.
Todd came. Trish came. My father and his fiance came. We woke the kids up and told them. We waited for hospice to come.
The hospice nurse, Katie, came to check and call it. She called time of death and cleaned him all up, put him in his Marvel pajamas, tucked him into our bed with bear (and Todd brought monkey a bit later,) and we had four wonderful hours with him as a family. We took turns lying beside him and talking to him. Ted went on a beer run because, well, you know, our kid just passed away. A beer sounded nice.
The social workers came and called the funeral home. We asked the funeral home staff to not cover his head and let us escort them out to the car. When we were ready, we all said one last goodbye. Gabby was the last one to hug him while he was on the gurney waiting to be taken out.
We followed Willy to the car. It was a stunning evening. Stars, clear skies, crispy weather but not freezing. We stood there all holding hands as they put Willy in the car.
A new chapter started that evening. More to come. I will want to write about the outpouring of support and the funeral planning. But for now, I wanted to share Willy's last week with all of you.
Peace.
Bless Willy. I didn't realize how fast it was. He has such am amazing family. Love to you all <3
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