Surprise PICU Stay

Waiting in the waiting room at RMH

I’ve posted before that Justin has a problem with a part of his throat and may need surgery. It’s come to be our “normal” to hear him make noises while he breathes 95% of the time, there is barely a minute that goes by that he’s not by my side or in my arms so I can make sure he’s still breathing (not necessary, but I’m paranoid). For a few days I had noticed Justin’s hands turning a greyish color while he was nursing…one of the signs his ENT told me to look out for. They went back to normal quickly and he was fine. Monday, he was inconsolable, wouldn’t take his paci, wouldn’t nurse, couldn’t get into a good sleep (any slight noise would wake him up and he would be screaming again) so I panicked and  got all the kids dressed and out the door, I made a call to Jeff at work and told him to ask to be dropped off at the hospital to get the big kids and the van. Justin’s oxygen level was at 95% so they weren’t concerned and sent us to the waiting room. Jeff arrived shortly after and got the kids so I could focus on Justin. We waited HOURS (total of 5 hours) in the waiting room. While I sat alone in the children’s play area (I just stayed there when Jeff took the kids since it was quiet and the chair was comfy lol) an older lady had come over and asked what was wrong with him and after talking for a few minutes she asked if she could hold him, I let her and we went over to a bigger seating area so we could sit together. She was with her pastor who’s mother was being seen and I was thankful for someone to talk to and someone who give my arms a break so I could snack…she happily rocked him and when he would fuss she stood up and walked and bounced him (she never went more than a few feet from me) We just talked, and it was nice to have that company. Eventually she left and I was left alone again, thankfully a family friend offered to come sit with us and give us a ride home when we were released…I couldn’t be more thankful for her, she didn’t hesitate to offer to sit with us even though I just asked if she would be willing to come get us when we were released.

On the stretcher in the squad on the way to UVA

After multiple times to the desk to ask when Justin would get a room, one rude nurse and my family friend almost going off on the nurses asking why her “grandson” was being made to wait over 4 hours when he is having trouble breathing! Finally after 5 hours in the waiting room (we arrived at 6pm, got called back at 11pm) The nurse was quick to come in and ask the normal questions and the doctor followed shortly after…he immediately said the best place for Justin was at UVA (a bigger hospital over an hour away), now this was always in the back of my head since his ENT is based out of that hospital and the hospital has the necessary doctors to deal with a baby as small as Justin with his problems. It was still scary to hear. While the doctor was making the necessary phone calls I fed Justin to make sure he would be ok for the trip, while nursing his hands turned colors and we had a nurse come into the room and put an oxygen thing on his foot…his levels were fine but when I went to burp him, they dropped…I changed his position and tried to stimulate him to breathe normal and they went back up. By 11:45pm the transport team was there and were being given Justin’s details and informed them about his desat (oxygen level going down…I’m really learning too many medical terms!) They strapped him into his car-seat and strapped that to the stretcher as well as made sure he had a heart monitor on and the oxygen monitor on his foot still. I said bye to the family friend and thanked her a million times for sitting with me for those hours. The paramedic give me a long speech about if something were to happen to Justin on the trip for me to stay out of his way…no problem, he’s the professional not me! We were out of the hospital by midnight. They put the lights on “Priority 2″ so they could get through lights and go faster than traffic, we got to UVA in 55minutes.

Long day...he was so tired after they finally got the IV in

UVA has it’s own pediatric ER which is where we were taken to first, multiple nurses and doctors come in to get his information and to find out what was going on, I was informed his ENT had been called and was on his way in. At this point I had lost track of time, I was in and out of sleep and just plain exhausted. One of the doctors who worked with his ENT come in and said they were going to just move up his surgery to that afternoon/evening instead of waiting until February. I signed consent forms for it and that was the hardest thing, to sign a piece of paper that said one of the complications could be death (that’s on all surgery consent forms, but still!) and he could end up with a tracheotomy (because it was in the throat area) We were being admitted to what I was told was Pediatrics, but when they wheeled us (I was on the stretcher holding Justin) we went into PICU (Pediatric Intensive Care Unit) and my heart sunk! I stood on the other side of the curtain while they stuck my poor little baby to get an IV put in and hooked him up to a heart monitor. I think they finally got a cot for me to sleep on around 5 or 6am and I was up around 8am. I was hearing conflicting reports on if he could nurse or not but finally was told he could. That day was sort of a blur, I know they stuck him a ton of times trying to get blood and they just couldn’t get enough out of him I was standing in the doorway when the chaplain was making her rounds and she introduced herself and asked me how I was holding up, as I went to answer her I just started crying…my baby was behind me crying from having a needle go into his arms multiple times and I was lacking sleep

After a nice bath the 2nd night, he was listening to the TV.

and food not to mention one nurse told me if he was on a no feeding order I wouldn’t be able to stay the night with him again (I was not a happy mama to hear that but just waited it out because I was going to refuse to leave). I was then getting conflicting reports on if he would have surgery or not…when the ENT come in around noon and said that morning when he saw him his heart rate was low until he scratched the top of his head. His thought was there may be more to the issue than just the throat thing. Scary thought that there may be something wrong with his heart! Again, after waiting…his oxygen levels stayed up and his heart rate stayed up so we were told he could be released the next day (today) as long as everything stayed good. He didn’t want to do unnecessary surgery. We saw a nutritionist and a speech and language person who luckily come in while I was nursing so she could hear him sucking and swallowing and said he sounded great.  Overnight he did great with no desats and his heart rate stayed good (I was also allowed to stay with him since he was allowed to feed!)

Today he was released. I was so happy! We’re happily home relaxing, but I’m still on edge watching his every movement!