The lows are low, but the highs sure are high

On Wednesday Emerson had his bronchoscopy and bone marrow biopsy scheduled. He was put on the red list because his procedure was not planned meaning that there were a bunch of other babes who had been waiting months to get their own. They gave us hope that he would be done earlier in the morning because of his age and illness. Our Immunologist also needed it done before 14:00 because of her bone marrow teams working hours. They told us his last bottle could be at 2:00 the night before so we woke him up and fed him. He woke up at 6 am screaming wanting a bottle so I knew it was going to be a very long morning.. We distracted him the best we could but by 8 am I had had enough. I wanted an answer to when we were going to be scheduled into the OR and no one had an answer for me. I made them call down to the OR to see if he had been scheduled. He had not been and right now the earliest they'd get him in was 15:45 unless something opened up earlier. They were going to starve my baby "just incase" a room opened up earlier. I was shaking I was so angry. It is the hardest thing in the world to watch your baby cry in pain when you know you could end his suffering easily by giving him a bottle. My entire body hurt hearing him cry. All I wanted was an answer to a time so we could schedule to feed him 6 hrs prior to our OR time.. No one seemed to care and they told me it happens to babies all the time and I should suck it up. I might have said some words to the staff Im not proud of but I don't regret saying them at all. I think the entire policy&procedure that took place was absolutely ridiculous and flawed. We wrote up a complaint so hopefully no other families have to go through the day we went through.

Finally at 14:00 they told us we would be going to the OR within the next hour (E had been without food for 12 hours). We got his stroller/cover ready to walk him down, met with the anesthetic team/RT/surgeons and did our time out. I was able to walk with Emie into the OR suite and comfort him while we fell asleep with the sleeping gas. The two procedures were to take about an hour if everything went smoothly. We sat and waited watching the board to see if his name had changed colors to "case closing". At the two hour mark our Immunologist came in and told us they had worked on the IV for the first hour of the case... He ended up getting a central line (a big long IV close to his heart) put in. She said her procedure went very well and they were just starting the bronchoalveolar lavage (they flush a bunch of saline into his lungs and suck it up to see what bacteria are growing). Another hour went by and the Respirologist came out. The bronch also went well and they were happy with the fluid return. He was doing well in the recovery room and would be able to go back to our room on Unit 2 instead of the Pediatric Intensive Care Unit. We were able to go back and see him. The nurse was holding him and he was pissed (hangry).. We transferred him back to our room but were told we couldn't feed him until 1900 because they had to use freezing on his vocal cords.. Thankfully he fell asleep for a bit and woke up just before 1900. Just like that the day from hell was over and ...

It was DISCHARGE  day :) !!

Emie woke up smiling and ready to start the day. We began organizing and packing our belongings up. The resident came and removed the central line and E was free! We were just waiting on Immunology & the Dietitian to come talk with us. The Dietitian gave us a booklet of dos and don'ts for Emerson's new diet which is similar to what not to eat while pregnant but to the extreme. No berries/ fruit you cannot peel, no probiotic dairy products, no beef jerky/smoked meats, no baked goods made with over ripe fruit such as banana bread :(, and the list goes on. We waited a couple hours for immunology before walking ourselves down to the clinic to get things going. They gave us our emergency contact numbers incase E spikes a fever while at home and the information about our weekly clinic visits. We were now home free! We loaded up E in his "bubble" and made our escape. I have never seen him so excited to be at home. I don't think he has wiped the smile off his face since Thursday. We have been enjoying having some "normal" days without vital signs and IV lines :)

Now we wait to hear about Emersons blood results to get in and for him to be added to the donor pool. Pray that he finds a match quickly and that we are not re-admitted due to fever.

I will update on Tuesday with how our first clinic day goes.

D