It's been a topsy turvy past couple of days with Dorian. His inability to hold up his O2 levels on room air went from needing 3 liters of oxygen via nasal canula to needing 5 liters and still not maintaining his O2 levels in a safe zone. His heart rate was faster than normal and his body was just working too hard. To make things even more challenging his outpatient X-ray in the morning showed he had a partially collapsed lung.
Under all those factors, last night we decided (under the pulmonologist recommendation) to take him into the ER. When we arrived it was jam packed. It's NEVER full... Every time we've been there we are either 1) the only patients or 2) there's maybe one other family there.
We always go to Childrens in Plano because it's the closest and they are able to handle everything we need, plus it's nice that we always are recognized by friendly faces of the nursing and medical staff. This time it looked like the waiting room at the DMV.
Luckily since Dorian was on a small tank of oxygen, as soon as I saw the huge crowd I went straight up with Dorian and showed him his tank indicator was near empty so they rushed us right back without any waiting.
They tried a lot of different things to get his O2 levels up while putting an IV in him. Both Marcia and Chris took turns running back to our house to get more breathing equipment since the hospital staff kept telling us maybe our stuff from home would work (Chris was not happy about that). Dori was very opinionated and kept suggesting the staff leave him alone by saying "all done! All done!"
After placing him on 25 liters of bagged air, he finally calmed down and we were able to titrate him down to nap on 5-10 liters and maintain his O2 in the upper 90s. Poor little guy was exhausted. By that time nasal swab tests came back and he tested positive for 2 upper respiratory viruses.
Unfortunately all the ICU beds at Childrens in Plano and ALL the ICU beds at Childrens in Dallas were occupied by other critical patients so our only option was to transfer him by ambulance to Medical City Childrens in Dallas.
Of course the ambulance staff remembered us ... We've ridden with them twice before. They were very efficient and kept to our wishes for no intubation. He was safely transported with lights, sirens and all (very Dori style ☺️) and was in his hospital room by 2:30AM. Unfortunately all our medical records are NOT in the Medical City electronic system so we had to start from scratch on medical history etc while they made him comfortable and allowed him to finally sleep on the bipap.
Some time around 3AM I fell asleep and was able to sleep until 5:30 when the doctor came in. It's always nice to see a familiar face. First words out of his mouth were "I'm sorry" but there's nothing he should feel sorry for. His staff has helped us over the phone prescribing us antibiotics and steroids and giving us guidance this entire time. I'm not upset that Dori has to be in he hospital because we're tapped out with what we can safely do for him at home.
Chris came home to spend the night with Ben and Alex and last night before we left them with Marcia to take Dori to the ER it was very emotional for them. They both started bawling and kissing Dori and asking if they'd ever see him again. Chris reassured them bluntly "we never lie to you. We are always honest with everything about Dori and Wynnie. We'd never tell you bullshit right?" The boys nodded and Chris said "when Wynnie got real sick remember we talked to you guys and told you honestly how sick Wynnie was and how serious it was? Well Dori is not there yet. He is fine and he will be fine, he just has to go to the hospital to get stronger treatment than what we can do at home. We promise."
The best thing with Ben and Alex is to never sugar coat things because then that would make them question us and what we tell them as parents. So I'm glad Chris took the lead on that and hopefully it helped put them at ease. They slept with their phones in their beds, we told them to call us if they wanted to talk.
So now Dori has been peacefully sleeping all night and all day at the PICU. He only wakes up when the respiratory therapist comes in to give him chest compression therapy (basically a huge vibrating wand that shakes his chest to help loosen the fluid and mucus). The wand is a running joke in the family because my seester wanted to steal it for her lower back last year. Chris and I were like "riiiiiiggght" 😜ha ha ha!!
Dori's blood pressure is slightly elevated so we are treating that with meds via his IV. He is continuing antibiotics and steroids to help, and he is still hitting people when they examine him so I know that's a good sign. He only hits when he is "with it". If all goes to plan hopefully Dori could come home by this weekend. We will move forward with placing Dori on hospice care like Wynnie (where a nurse visits us once a week to check up on him and help us navigate between doctors and medical supply companies). I'm thankful he is in good hands at the hospital. I was a total stress ball all day Monday ... So much that I think even Chris was worried about me. So I'm glad I woke up with a better outlook and stronger faith on Tuesday...Especially now that everything is falling into place for Dorian.
Since Dori has respiratory viruses we ask for no visitors please (!!!). Thank you for all your prayers and support... Dori will literally punch these viruses out to the curb and will be back home jamming out to music in no time! Go Dori Go!!
