This will be disorganized. things won't be spelled right. punctuation will be wrong. sentences will be wrong. i simply have to type the words. feeling may show so strongly at points and others may sound so numb. this is the best i can do now.
we were supposed to have more time. we weren't on hospice. this shouldn't be our story.
What happened? We are being asked that a lot and honestly we are asking that question ourselves. It's all a blur, it's emotions, fear, pain, torture, it's spiraling downward into oblivion.
Eli had surgery on Thursday April 25th at around 2:30pm. He had his tonsils and adenoids removed, tubes placed in his ears, and a bronchoscopy. The docs said it would all help and was a good idea. As I said previously I was concerned.
Eli came out of surgery with some increased O2 needs (normal after surgery), trouble keeping his blood sugar up (not quite normal but not holy cow out of normal), and some choking spells (which they expected from the increased secretions after surgery.)
They sent Eli home Friday April 26th around 6pm. The attending begged his primary doc to take over at home care. We got home and Eli had yet another round of choking around 7pm. He got situated and we got him to bed on his mattress upright in the middle of his room. Bob and I threw a futon mattress on the floor next to him keeping watch over him all night.
The next morning, Saturday April 26th Eli was still struggling. I called thru the paging system and finally got in touch with his primary doctor. It was agreed that it sounded like Eli had aspiration pneumonia, and it was decided to bring him in.
We got to the ER around 1pm. They did chest xrays and sure enough a touch of cloudy in his right lung. He was needing more and more O2 at this point. They decided to admit him to PICU around 2:30pm. They asked me if he had ever been intubated. I said yes of course. Bob got to the hospital around 3pm and we all got to PICU around 3:30pm. Eli's struggle continued to get worse. They put him on a high flow O2 mask.
This is where time starts to get blurry.
Around 5pm Eli had his first seizure of the night. Breathing was harder, his temp was up. His heart rate at this point was 170's and his resps around 70ish. They switched Eli to 100% O2. 3 more seizures followed.
They started BiPAP around 7pm. He continued to struggle.
Around 8pm we were holding him in bed and he had a huge seizure and stopped breathing. The nurse grabbed him and started bagging him. At this point they called his first code. Everyone swarmed. I lost it and collapsed in the hall.
They intubated Eli at this point. They couldn't get him on the vent. I watched the monitors for so long. His O2 level was around 6 for so long. His HR and resps a mess. This went on for around 1 hr. They couldn't get him onto the vent and he tanked even more every time they tried. They bagged him for so long.
Another chest xray. pneumonia getting worse.
Around 10pm the docs said he had a 90% chance of pulling thru.
He kept coding. They couldn't get him on the vent still. His O2 level hovered around 50-74.
They had him running on 10 or 11 IV machines at this point.
Around midnight on sunday april 28th the doctors wanted to try the hail mary vent. They were out of options. Eli had already coded maybe 3 or 4 times at this point. The team never getting him stable, never being able to leave his side.
another chest xray. pneumonia worse.
they tried the hail mary vent. the docs said they would give it 30 minutes. it didn't work.
another chest xray. our world ended. every drop of air was sucked out of us. we were crashing, falling, dying. the blow was like none other. Eli had ARDS...Acute Respiratory Distress Syndrome. It's fatal. Eli's lungs basically freaked out, the pneumonia causing them to attack themselves. The final chest xray that was less than 2 hrs before the last showed his lungs COMPLETELY white. At this point the docs said we had less than 5% chance.
At 1am Eli's primary doc (he was called hrs before and stayed with us the entire time) made the call. Bring the kids. The kids arrived around 2am.
We took each child in to see Eli. It was heart wrenching.
eli's primary doc (also the kids doctor) and the head of the hospice dept took the kids into a room and talked.
the kids had a 2nd PICU room next to eli's set up with toys and food and drinks and pillows and blankets. they were able to move about between their room and eli's room. the hospital had so many people there to help one on one with each child. allowing them to have special care and do as they needed.
At 2:30am bob and I were in the hall with Eli's primary doc. There is nothing more we can do. His body is shutting down. He isn't breathing. He was so swollen. kidneys not working. heart could stop at any moment. can't cause him this pain. DNR. DNR DNR. This is the words that were being said to us.
we were standing in the hall right outside his open door at 3am discussing signing a DNR when Eli went into a full code. He stopped breathing. His heart stopped. Everyone rushed. We heard the PICU doc yell for CPR. We rushed into the room saying no no no.
He grabbed us across the bed and said you have to say it. you know what this means. i kept screaming that i hadn't held my baby yet. they had never got him stable for us to hold him. he shook us saying you have to say it. Eli's primary doc was behind us holding us up. I looked at the PICU doc and screamed DNR STOP. As I did our kids screamed and ran into the room.
it was a flurry. the team ripped all the cords and monitors off of Eli. He was in my arm in milli seconds. they shoved us on the bed. bob and i on the bottom, eli on my chest and bobs, the kids piled on the bed on top of us.
i took the intubation tube from eli's mouth and threw it across the room. we took off the last few monitors. we turned on music...Josh Groban "Awake" we all sang.(this is the song that Josh Groban dedicated to Eli 2 yrs ago during his Wichita concert, and the song that we have since played for Eli hundreds of times.) we held him. we cried. oh did we cry. we did his footprints and his hand prints in clay. the kids loved on him and kissed him.
we stroked his beautiful hair. we held his hands. we kissed him.
the only people in the room were bob and i, the kids, lauren, cheryl (our good friend), Eli's primary doc, the hospital chaplain (a friend of ours)...everyone else had left. all the monitors were off. it was just us and our baby.
at 4:05am i looked at eli's primary doc and begged him to do it. knowing what he would say. knowing that eli had passed soooo long before. he listened to eli's back 4:06am. he listened to elis front 4:07am. he said those dreaded words at 4:08am while he, bob, lauren, and i held eli.
michaella and my parents arrived around 4:45am. we were still curled up with eli in bed.
around 5am lauren picked up eli while bob and i stood up. they brought us a basin of warm water and a huge stack of washcloths.
we used eli's soap and we all gathered around the bed and bathed him together. we used lotion, and did his tubie care. we brushed his hair. put on his socks and diaper and pj's and glasses.
all the while the hospital chaplain took photos of our time documenting the whole evening and morning.
we took family pictures. we said our goodbyes.
the moment it was time to leave jace lost it.
at this point we hadn't slept. we hadn't eaten. we had no idea what we were doing.
we all finally left the hospital together sometime after 6am and stood together in a circle in the parking garage crying.
so much happened during the hrs, days and week to follow but i can't go into it now. I'm worn out from simply typing the above.