As we had this long 8 months break from the 8th floor and PICU at Children's Hospital, I did have time to think through many of the hospital stays we have had. The harder ones, the medium ones, and the easier ones when you knew discharge was around the corner.
As time went by, I started to dread going back. I was thinking about the draft from the big window laying in the pullout couch never being able to really get a good night sleep. I dreaded the toilet in the PICU that makes me want to vomit every time I use it due to the smell. I dreaded the long hours of doing nothing than sitting in Jacob's bed trying to light up the day with reading stories, watching movies, and cuddling. I dreaded the moments when the doctor or nurse doesn't get us. They either think Jacob is sicker than we do or healthier than we do, and the battle that comes with advocating for your sick child. I basically didn't want to go back.
So, last Saturday when it was time to pack up our bags and head over to the ER, I was actually wondering how it would be this time around. As we entered the ER waiting room, the nurse greeted me and Jacob with names and immediately put him in the triage room so he wouldn't get exposed to any germs in the waiting room. She has no idea what she did by simply calling Jacob his name, and commenting on how big he looks. It was the one thing I had to hear to get into the right mind set.
And the rest of the hospital stay continued that way. We are always treated with such respect by the medical team. There is very seldom these days that a decision would ever be made without us first agreeing to it. It goes for meds, it goes for treatments, it goes for going home. We're part of his care, and they always point out what an excellent job we are doing for Jacob.
Our 8 months break also made me fired up about the respiratory therapists. Unfortunately, we have struggled with them. They don't know how to suction Jacob, and we always leave with bloody noses, which makes it even harder to keep Jacob's lungs clear. They love to come in close to midnight and 4 am in the morning to do breathing treatments for Jacob. I am every time wondering how they can think that is a good strategy for a sick kiddo? I understand that it has to do with their schedule, but shouldn't this be in the best interest of our son?
So, I had already decided with Joakim that we were not going to do this with respiratory this time around. I was going to ask if I could do all the breathing treatments and suctioning for Jacob on his home schedule. They could still do their meds whenever it worked for their schedule. I brought it up with the first respiratory therapist, and all the others throughout our hospital stay, and amazingly they all agreed!
I realized that before I had been too tired or having bigger battles to fight, so I never raised this concern to them. By simply talking about it, we had a plan! No bloody noses, and all breathing treatments were done on schedule. I learned my lesson that I always have to communicate...
So, the draft from the window was still there, the sleep was still poor, and there were long hours in bed, but when Jacob needs the hospital, I can honestly not think about a better place than Children's Hospital. Every nurse, every doctor is just there to do the best for our kiddo, and that is an amazing thing. That is why it felt so good to be part of Alice 105.9 36 hours Radiothon for Children's Hospital yesterday. It was really emotional to talk about this place that has done so much for Jacob. Amazing things.
I am getting the recording some time next week, so will post it if you missed it!
And our Jacob is still recovering from his cold. He spiked a fever yesterday and had a seizure right before we headed in to the hospital. The plan is to take it easy over the weekend, and stay home from school next week, and hopefully that will get Jacob back to normal again.
Happy Friday to you all! - Maria.