24 hours…

Wow…

what an amazing, excruciating, painful, relieving few days it’s been. Conner’s been breathing free and deeply for 24 hours now…and it’s just surreal. More for my memory than for your information I need to write out all that has happened. It’s been the most powerful, life changing few days of my life and I don’t want to forget one second of it. Ever…

My mom must’ve had mental telepathy or something…she called me Monday and said she had taken the rest of the week off and just wanted to help us out and be there for us. Sure I said, C’mon down…She arrived Tuesday evening.  Conner took a long bath that evening, and was leaning on the bathtub edge but oh he enjoyed the water. it really soothed him. Wednesday there was alot of running around for me since i had my mom to sit with the kids because Conner was in no mood for travel. I spent the day getting an A/C because it was FINALLY warm here and with Conners oxygen concentrator running 24/7 the house was staying pretty warm. He was running off and on fevers so I wanted to make sure he was comfortable. Wednesday evening I went to CF family council and after the meeting I sat down with Ben and Wendy from the team and discussed pain control issues with Conner and we exchanged good information and they gave me specific things to look for etc, but at this point Conner wasn’t great, but he wasn’t dire that would come later, unknown to me. I made it home and Connerman and I snuggled in my bed as we have been bed buddies for the past few weeks now, Brad has been sleeping upstairs with Hunter boy. Time very well spent in my opinion for both brad and myself. That night Conner was whimpering off and on and he even was pottying in his pants because it was too much for him to get up to go to the bathroom. His breathing was rapid but it was still on the “normal side” for him. This went on all night and we didn’t get much sleep at all (conner and I). He ripped his bipap off that night as well saying it wasn’t giving him enough oxygen. That was a first sign.

The next morning, well probably only about after 3-4 hours of sleep things took a horrible turn. and I mean HORRIBLE. His breathing was so rapid and so struggled that with each breathe his body shook the bed with the energy needed just to breathe. I called Ben first thing about the bipap to see if we could switch settings to help him out. we did. it still didnt work. I called Conners home nurse, Correna to come out to see him cus i wasn’t sure if this was really happening or if I was overseeing things. She came out and took one look at him and I just knew then that it was now not a matter of days weeks or months…but hours. I prayed at that exact moment that when Conner passed that it would be in the evening. Past the time most people are awake so there would be no nosy gawking neighbors, or commotion, our other small children would be sleeping and wouldn’t be scared when it happened. I’m so greatful that Conner gave us that one last amazing gift…thats our boy. at some point here conner looked at me in bed and just kept saying “why why why why” that was almost unbearable. I had no answer to soothe my son. so painful. Noontime came and Hunter returned home from VBS and brad and I brought him into our room where we were with Conner, and told him that today would be the day his brother would meet Jesus. Hunter understood very quickly, he laid next to his best friend and he didn’t want to touch him so he wouldn’t hurt him (although was reassured over and over he wouldn’t hurt him) and then ran outside to play. The family had already started arriving for help and support and to say their goodbyes. Dear friends were there coordinating our lives and house and things really were smooth.

Time from here is very foggy. The last time I remember was noon and that was because hunter came home from vbs. i think one of our dear pastors came out that morning as well, leaving vbs to be with us. to pray with us, for us, and he and conner had a very private prayer time. At this time forward Conner was mostly out of consciousness. He was there but not really there. He was only taking oxicodone and ibuprofen every 6 hours then. Brad and i were with him almost the entire afternoon holding him, talking to him, resting with him, loving on him. and every once in awhile he’d open his eyes and his eyes would be frantically searching for something so i’d tell him “mommy’s right here” or “daddies right here” and he’d settle back down. There was an hour that he was completely lucid. He all of a sudden woke up and asked to be moved to the couch in the living room to be with everyone. Balloons with a stuffed animal arrived just then from his dear buddy Mason Grahl in Wisconsin. Perfect timing. We’d been trying to keep his mouth moist and clean since he’d stopped drinking the night before. Conner asked for an Otter pop, he ate two. Then he wanted watermelon and he ate a slice, he wanted mini marshmellows, and ate alot, and then finally a banana. His last meal on this side of heaven. Such a great menu for him…

A little later he asked to be moved back to our bed. So Brad carried him back and we got him all situated and comfortable. His home health nurse Correna came back by to check on him and we talked with her about doubeling his pain med dose. She left and called Ben to talk with him about it, after checking his sats and at best they were 85 by then. Awhile later Ben called me and said that legally he can’t up the dose since nobody is in the home as far as a licensed nurse to be there for administering it. He suggested that if our ultimate goal now was to keep Conner pain free then we should make the switch to hospice. I think at this time of the day i was feeling a bit more optimistic or in denial of it all since conner had just been wide awake just a few short moments before. We decided to have Ben switch us to hospice.

BEST. CHOICE. EVER.

Here’s a bit of disapointment. As a CF mom I’m used to having insurance companies deny Conner a med like it’s a fun game, or make us jump thru hoop after hoop to get a prior authorization for things. Ben called hospice, made the referral, hospice then called our insurance to get the mandatory prior authorization and it went thru LIKE. THAT. that hurt my soul. Insurance is so backwards. Not the point. Anyway. hospice nurse came out at this time and was in our bedroom with brad, conner and i, as our bed had become our couch, table and bed over the hours of the day. i signed the consent forms and Brad and I watched as the nurse showed us how to administer the morphine and the lorazopam into Conner’s port. We then gave him his first dose as the RN was there since he was just about due for oxicodone. He was comfortable within minutes and was able to actually fall asleep. which was such a huge relief to us.The script was for those meds every hour at the small doses, or every 4 hours at the highest dosage prescribed. We stayed with the low one since he’d lost SO much weight and wanted to be cautious with narcotics. we hate them.An hour passed and we gave him a second dose. i walked outside to sit with family then for a bit since brad was in with conner. we alternated being in there with him so he was never w/o his mommy or daddy. i think this may have lasted around an hour or so. i have no clue.

What I remember next is that all of a sudden I looked at the clock in our room and it was 9:30pm. Conner was half hour past his dose of morphine. Almost immidiately I asked Sonja our dear friend and nurse to draw up the meds so brad and I could stay with Conner, he started moaning a bit. it wasn’t really like a cry, it was more of like a deep humming sound that started off very faintly and then grew louder and louder. It seemed to take Sonja forever with the meds and Conner in a matter of seconds had rapidly become very uncomfortable. I yelled for Sonja to hurry. Brad and I kept our faces low to Conners and kept whispering words of comfort and love into his ear. After what seemed like forever (but it I’m sure wasn’t!) Sonja came in and gave C the meds. A.M.E.N. After a bit the moaning stopped but then his skin had started paling and his fingernails were turning blue as well as his lips and his chest. His breathing became intense. It was very intense. It was heartwrenching to watch. I don’t wish that on the devil himself. Nobody should EVER see their child in such pain, distress and misery. Slowly people began gathering in our room with us. talking with conner, telling him how much they loved him. People came and went, I have no clue who all was even there. There was so much my friends were doing behind the scenes. They all were so amazing. So amazing.

It got to a point around 11pm where everyone was gathered around him and praying and conner would stop breathing then start again like 30 seconds later. After about ten minutes of this we asked everyone to leave. It was just Brad and I and Conner, just like the day he was born. Perfect. He kept fighting off death, I think more for us then for him. He kept stopping breathing and then a bit later would start again. Brad and i kept whispering love into his ears, telling him we’ll be ok without him, that we just want him to be out of pain, that it’s ok to go.  He just seemed worried about us. Bless his heart. He’s an amazing child. Brad and I were laying with conners arms on us. He was in the middle of us and we each had a hand and the other hand was either touching conner or holding each others hands. It was beautiful. really. powerful. The time came when he finally stopped doing the gasp for air after stopping for a period, this time his body tensed up, he squeezed our hands and instead of inhaling he exhaled. silence. then a short while later again he exhaled. He was gone. at about 11:40pm our firstborn son died. I knew he was gone but denial told me otherwise and so i asked brad if he was gone and he said yes. the pain that ensued at that exact moment is simply out of this world. indescribable. I’ve never, EVER nor will I ever again feel such deeply intense pain. Every nerve in my body was tingeling. My heart felt like it was going to burst from my chest it was on fire. The tears and moans were intense, loud and simply horrible. There simply are no words really. Brad then went and told the people in the living room that he was gone…they all came in. I heard voices but my eyes simply wouldn’t open. I kept screaming out to God, I remember screaming for someone to just turn off the oxygen concentrator since I heard it buzzing still on Conners face and it just infuriated me. They did. Whomever that was, thank you. I remember hands all over us, hugging us, rubbing us, consoling us…then I remember Brad telling me that I needed to open my eyes to look at Conner, He said that he was beautiful, looked so peaceful and pain free. I fought that for awhile, I simply wasn’t ready, and I was scared of what death would look like on our child.

I opened my eyes.

He was breathtakingly beautiful.

He had a Conner smile in the corners of his lips so I know what he saw as he was leaving this world was good. amen for that. He looked like an angel. truly.

We spent time with him, everyone said their goodbyes to him and gave him a kiss and then at some point the hospice nurse came in to record what she needed to for the death record. She did so without disturbing brad or I, a true gift. She was exceptional. Our funeral home that we’ve been making arrangements thru was called, and at some point a few hours after conners passing Rick Little showed up to take Conner.

THAT’S WHEN MY WORLD STOPPED.

The intense feelings of just him being in our home, in a wonderfully tailored suit at 2 or so in the morning. That made it all the more official. Brad and I gave Conner some last loves and kisses and left our room to the living room and told Rick we were ready for him to take Conner. What a man. He made sure to leave the stretcher outside, out of view. He didn’t put Conner in some horrible black zippered bag. He simply draped him in a white blanket, but I noticed that it was tied on either end so his body wouldn’t show. A true gentleman, where brad and i were sitting, literally being held up by friends mighty arms, he made sure to carry him out in such a way that we couldn’t see much of him. As he walked out of our home Brad and I simply cried, screamed, whatever. This would be my first night without Conner. Since I was with him at the hospital for each and every moment, and arranging all of his therapies, appointments and medicines for his entire life…seeing him leave this house that we bought for him to be closer to the hospital…my dreams kind of died. My dreams for my firstborn son kind of walked out the door with him. i simply couldn’t breathe. i was gasping for air. Brads head was buried in my lap, he didn’t want to see it all unfold. Our wonderful family and friends were all around us holding us together as best they knew how, yet allowing us to simply express our grief. Rick came in after he placed Conner in his vehicle. He knew our family. He knew and prayed for Conner. This hurt him as well. He gave us his hand and looked into our eyes and expressed his deepest sympathies and said “i’ll take good care of him” and left.

People were already called of course but there was one more call to make. To the CF doctor on call. Mary called to wake up Dr Wall and told him of Conner. Then she brought the phone to me…he expressed his deepest sympathies. He said in his almost 30 years of being a peds pulmonologist that he’s seen unfortunately many with cf pass away. He remembers vividly very few. He said Conner would be forever in his memory. He has a picture of Conner and his bingo buddy Matt (mary’s son with CF) hanging on his wall at the hospital.Since they could never be that close, we photoshopped them together and made a picture. Mary’s family did that. He asked about services…and said that he would let the entire team know and all of the nurses and respiratory therapists and child life people on floor 9 know. The school teacher even. I know that he did. At some point Brad and I fell asleep, him on the couch and me in our bed hugging Conners Grover doll. I was woken up by Hunter around 9am asking where Conner was. I said in heaven now..Hunter looked at me and then smiled and said “no more oxygen mom” then he ran off to play. thruout that morning there was a flood of help in our home. I stayed in bed for quite awhile before I would brave going out. Dr. Link among others called. I had a friend call the home health company to remove all medical paraphanalia out of our home. I wanted to see nothing of it. Bless their hearts, as I walked out of the bedroom dreading what I would face, all of Conners meds, nebs, tubes, syringes, needles, feeding bags, boost, EVERYTHING was gone. Out of sight. What was unopened was placed in a large box and already was arranged to be given to families with CF who have no or little insurance. We had just reordered pulmozyme which is expensive and even had almost a full months dosings of Cayston which is around $5000. I feel so good to know that more than $8000 of meds would be given to those with CF who need it most. Conner would be thrilled. Obituary was turned in and will appear in Sunday’s paper in town, in Olympia, Vancouver and the Long Beach Peninsula as well.

the rest is simply details…

Dear friend so close to our hearts Dana, gave us the most amazing gift…she took pictures of us with Conner on his last day on earth…these will simply take your breath away. We will cherish these for a lifetime.

Moms hands with Conner

Mom with Conner, my tears running down my hand.

dad and son

Conners hands on daddy

just as I kept whispering in Conners ear…

Love Love Love

Sarah